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A multi-method assessment of treatment adherence for children with cystic fibrosis
Abstract
Adherence rates for chronic pediatric conditions are approximately 50%. The primary objective of the study was to assess rates of adherence using four different measurement methods for children with cystic fibrosis (CF).
Participants included 37 children with CF between 6 and 13 years of age and their primary caregivers. Adherence measures included parent and child self-reports, diary data, pharmacy refill history, and electronic monitors.
Results suggested that rates of adherence varied by treatment component and across measurement methods. However, when examining more objective measures, rates of overall adherence were below 50% for children with CF, indicating generally poor adherence to the treatment regimen. For example, rates of adherence to enzyme medications, using electronic and diary measures, ranged from 27% to 46%.
The multi-method measurement approach provided unique information regarding rates of adherence for each disease condition by type of treatment component. Accurately measuring rates of treatment adherence for children with CF is an important step in developing effective interventions to influence these behaviors.
... Consistent with adherence rates across a range of long-term conditions (WHO, 2003), people with CF often struggle to take their preventative treatments. For adults with CF, objective treatment adherence estimates range from 31% to 36% for inhaled therapies (Daniels et al., 2011;Hoo et al., 2021), 43% for pancreatic enzymes, and 34% for vitamins (Modi et al., 2006). Even with the recent introduction of highly effective modulator treatments (oral tablets) in CF, early evidence suggests that adherence may be suboptimal (e.g. ...
... Self-report is subject to a range of biases (Osterberg & Blaschke, 2005), and evidence has highlighted the discrepancy between self-reported and objectively measured adherence in people with CF (e.g. Daniels et al., 2011;Modi et al., 2006). ...
... It is well known that patient self-report is unreliable (e.g. Daniels et al., 2011;Modi et al., 2006) and is subject to social desirability and recall bias (Osterberg & Blaschke, 2005). Indeed, in our study, participants highlighted the challenges of being asked to accurately recall the amount of treatment being taken. ...
Objective:
Previous research exploring patient-practitioner communication in relation to adherence in cystic fibrosis (CF) is limited. This UK study explored the views of adults with CF on how treatment adherence (related to all CF treatments) is discussed in routine CF care.
Methods:
12 White British adults (ten females; aged 20-37 years; mean 30.1 years) with CF participated in semi-structured interviews.
Results:
Three overarching themes were developed through reflexive thematic analysis: (1) 'The power of language'; (2) 'Healthcare professionals do not recognise the importance of context'; and (3) '"Admitting" non-adherence is difficult'. The way in which adherence is discussed in adult CF care is viewed as paternalistic and infantilising. Participants reported that healthcare professionals do not always consider the desire to balance treatment-taking with living a normal life. Unwelcome responses from healthcare professionals, and the inability to accurately self-report the amount of treatment taken made it difficult to 'admit' non-adherence.
Conclusions:
A culture change is needed in CF care such that people who struggle to take their treatments are not labelled as disobedient, wilfully disobeying orders from healthcare professionals in positions of authority. Instead, an open, honest, non-judgemental approach, as recommended by healthcare agencies for over a decade, should be adopted.
... Adherence questionnaires are generally unreliable in CF compared to other methods because they overestimate adherence [14,15]. The most used method is the Medication Possession Ratio (MPR). ...
... In most CF studies assessing TA, MPR has been used, comparing what is recorded in the hospital pharmacy with what should be consumed according to the prescription recorded by the physicians in the medical records [14,15]. This is a method that, although it has some limitations, is simple and comes close to the actual consumption of treatments. ...
... Data were obtained from the electronic records of the hospital pharmacy, which were cross-checked against the electronic history of prescriptions prescribed by the responsible physician. Adherence was considered good if it was greater than or equal to 80%, moderate between 50-<80%, and low <50% [14,15]. ...
Cystic fibrosis (CF) is a genetic and multisystemic disease that requires a high therapeutic
demand for its control. The aim of this study was to assess therapeutic adherence (TA) to different treatments to study possible clinical consequences and clinical factors influencing adherence. This is an ambispective observational study of 57 patients aged over 18 years with a diagnosis of CF. The assessment of TA was calculated using the Medication Possession Ratio (MPR) index. These data were related to exacerbations and the rate of decline in FEV1 percentage. Compliance was good for all CFTR modulators, azithromycin, aztreonam, and tobramycin in solution for inhalation. The patients with the best compliance were older; they had exacerbations and the greatest deterioration in lung function during this period. The three variables with the highest importance for the compliance of the generated Random Forest (RF) models were age, FEV1%, and use of Ivacaftor/Tezacaftor. This is one of the few studies to assess adherence to CFTR modulators and symptomatic treatment
longitudinally. CF patient therapy is expensive, and the assessment of variables with the highest importance for a high MPR, helped by new Machine learning tools, can contribute to defining new efficient TA strategies with higher benefits.
... In the existing study, about two-third of adolescent CF patients had reported adherence to treatment-related advice, which was in agreement with studies. (Modi et al., 2006, White et al., 2017. In contrast, to present findings, Knudsen et al., (2016) reported that the majority of the patients in the age group of 18-30 years were having low adherence. ...
... Generally, higher adherence rates have been found in studies using self-report measures in comparison to objective measures such as medication possession ratios, electronic measures. (Modi et al., 2006) Regular counseling and positive reinforcement on vital aspects of treatment (i.e. physiotherapy, nebulization, enzymes, and vitamins) are necessary to increase adherence rate to 100% in CF patients. ...
Cystic fibrosis (CF), an autosomal recessive monogenic disorder, leads
to abnormal exocrine gland secretions. The complex treatment regi-
men is time-consuming, burdensome, and costly. Poor treatment
adherence may result in increased morbidity and mortality, increased
healthcare costs, and hospitalizations, resulting in school absenteeism,
decreased productivity, impaired well-being, and decreased quality of
life in adolescent CF patients. This non-experimental descriptive cross-
sectional study was carried out with the objective to assess the level of
treatment adherence, perceptions, and reasons for non-adherence on
30 adolescents with a documented diagnosis of CF in a Pediatrics
Chest Clinic of a tertiary care facility in Northern India using the
purposive sampling technique from June 2019 to February 2020.
Data were collected using standard CF specific self-report question-
naires. The majority of the adolescents were boys (66.7%) with a mean
age of 14.90 ± 2.09 years. Most of the adolescents were adherent to
physiotherapy, vitamins, and enzyme supplementations. The most
common reason for not doing physiotherapy (36.7%) and exercises
(26.7%) was lack of time. For vitamins (46.7%) and enzyme supple-
mentations (60.0%) adolescents with CF reported that they simply
forget to take medications. The majority of adolescent felt about
right about the physiotherapy (63.3%), vitamin (86.7%), and enzyme
supplementations (83.3%). More than half of the participants felt that
their exercise level was not enough (53.3%). Majority of adolescent CF
patients were having positive perception regarding treatment adher-
ence (86.66%). Treatment adherence is common problem among
adolescent CF patients that needs regular reinforcement by healthcare
team members on vital components of treatment.
... The failure to consume these capsules often leads to abdominal discomfort, bloating, and steatorrhea [7,10]. Since PERT often requires patients to take 10 to 15 enzyme capsules per day, compliance can be problematic, with an overall adherence rate for taking pancreatic enzymes reported at less than 50% [11,12]. As a result, identifying a PERT-free alternative to nutritional supplementation for patients with cystic fibrosis can potentially lead to improved nutritional status and a reduction in the risk of hospitalizations associated with non-adherence to PERT [13]. ...
... Adherence with PERT remains a significant issue for patients with CF diagnosed with EPI [11,12]. A recent study reported that adherence to PERT is independently associated with a reduction in hospitalization and length of stay for both children and adults with CF, and it suggested that strategies which improve PERT adherence would improve outcomes in this patient population [13]. ...
Nutritional supplements for patients with exocrine pancreatic insufficiency (EPI) typically utilize pancreatic enzyme replacement therapy (PERT) which is associated with gastrointestinal side effects. We evaluated serum triglyceride levels in patients with cystic fibrosis following consumption of an enzyme-modified oil oral nutritional supplement (EMO-ONS) versus a standard triacylglycerol-based ONS product (TAG-ONS) used concomitantly with PERT and patient tolerability between the two approaches. Ten subjects with CF and EPI taking PERT were enrolled in a single-center, double-blind, cross-over proof of concept trial. Five subjects randomized to Arm 1 were administered a PERT placebo and EMO-ONS and 5 subjects in Arm 2 were administered TAG-ONS+PERT. After 4 to 14 days, subjects received the opposite ONS. Serum triglyceride levels were measured at baseline and hourly for 6 h. Following the above, subjects were randomly assigned to receive 2 daily servings of EMO-ONS+PERT placebo or TAG-ONS+PERT at home for 7-days, self-reporting gastrointestinal symptoms daily. Mean change in peak serum triglyceride levels were similar for both groups (EMO-ONS = 41.9 ± 46.7 mg/dL vs. TAG-ONS+PERT = 46.4 ± 44.1 mg/L; p = 0.85). There was no difference in mean ratio of the serum triglyceride AUC between the two groups (p = 0.58) or self-reported gastrointestinal tolerance. EMO-based products may provide a PERT-free alternative to traditional ONS products in patients with cystic fibrosis.
... It improves knowledge and experience of disease management which can reduce the cost of disease management and make healthcare affordable to all individuals in the society (Karbach et al., 2011). Additionally, strictly following the clinical procedure when operating medical equipment and machines reduces the chances of misuse and malfunctions of the equipment's which is an essential portion in cost cutting and decrease the repair expenses in the healthcare facilities (Modi et al., 2006). Several Studies indicate that proper mastery of the clinical requirement is essential in improving disease management and cost relative (Spruit et al., 2013). ...
... Several Studies indicate that proper mastery of the clinical requirement is essential in improving disease management and cost relative (Spruit et al., 2013). With the right knowledge of the treatment procedure, healthcare professionals will offer proper intervention to the patient irrespective of the experience in the field (Modi et al., 2006). Adequate skills also cut down the cost of training health care providers (VanDevanter, Kahle, O'Sullivan, Sikirica, & Hodgkins, 2016). ...
BACKGROUND: Adherence to cystic fibrosis (CF) clinical guidelines play a crucial element in the management of respiratory complication associated with CF disease. Despite the importance of adherence to CF clinical guidelines, there is a lack of literature in this area of research specifically relating to Respiratory Therapists (RTs). Therefore, it is essential to assess the perception and adherence level to CF clinical guidelines among RTs in Saudi Arabia. PURPOSE: The aim of this study was to assess the adherence level of RTs to CF clinical guidelines in Saudi Arabia. METHODS: Data were collected through a descriptive survey using questions based on CF clinical guidelines. The survey was emailed to all members of the Saudi Society for Respiratory Care (SSRC). Two main dimensions were assessed Knowledge and Management of CF disease. Excluded from the study were other healthcare providers and students. RESULTS: The total adjusted number of participants was one hundred-sixty-six (n=166) out of (N=351) responses. The study response rate was 46.8%. Most participants hold an undergraduate degree (BS and AS) 80.1% while 19.9% were graduate. Females accounted for 30.1% of all participants while males accounted for 69.9%. The study showed 35% of RTs in Saudi Arabia adhered to CF clinical guidelines. The study showed knowledge domain needs improvement compared to management domain (Mdn = 2), Z = -10.45, p < .001, rs = 0.49. The study findings showed the level of RT education did not have a significant effect on the level of adherence to CF clinical guidelines H(2) = 2.7, p = .255. Moreover, the study findings indicated that senior RTs (with > 5 years of experience) demonstrated a higher adherence level to the guidelines than RTs with less than 5 years of experience (Mdn = 8.7), U = 2056, p < .001, rs =0.314. Additionally, the study revealed no significant difference in adherence of the guidelines between regions of practice in Saudi Arabia, H(4) = 2.5, p = .645 Conclusion: The average overall level of adherence to CF clinical guidelines is low among RTs Saudi Arabia. Education materials need to be implemented to enhance the level of awareness, knowledge, and management of CF disease.
... We needed to contact patients 0-6 times to Previous studies have reported highly variable adherence rates to ACT in CF (3). The adherence rate is generally higher for self-reported adherence than objective methods like pharmacy refill information, use of electronic medication monitors, etc. (14,15). Objective methods, although promising, are not feasible in resource-limited countries due to availability issues, increased cost, and the requirement of additional staff for monitoring. ...
... Not surprisingly, therefore, studies on this topic suggest that levels of adherence to treatments are very low, although they vary according to the type of treatment [93]. Suboptimal adherence can negatively impact health outcomes such as the rate of pulmonary exacerbations, quality of life, and health care costs [94][95][96][97]. For this reason, several interventions such as telemonitoring, improved accessibility to the CF center, and psychological interventions [98,99]. ...
Introduction
Over the last ten years an increasing prevalence and incidence of non-tuberculous mycobacteria (NTM) has been reported among patients with cystic fibrosis (CF) Viviani (J Cyst Fibros, 15(5):619–623, 2016). NTM pulmonary disease has been associated with negative clinical outcomes and often requires pharmacological treatment. Although specific guidelines help clinicians in the process of diagnosis and clinical management, the focus on the multidimensional assessment of concomitant problems is still scarce.
Main body
This review aims to identify the treatable traits of NTM pulmonary disease in people with CF and discuss the importance of a multidisciplinary approach in order to detect and manage all the clinical and behavioral aspects of the disease. The multidisciplinary complexity of NTM pulmonary disease in CF requires careful management of respiratory and extra-respiratory, including control of comorbidities, drug interactions and behavioral factors as adherence to therapies.
Conclusions
The treatable trait strategy can help to optimize clinical management through systematic assessment of all the aspects of the disease, providing a holistic treatment for such a multi-systemic and complex condition.
... Furthermore, it has been reported that treatment adherence rates to Kalydeco® by people with CF is surprisingly suboptimal (about 61 %), which negatively influences the overall health and quality of life of these individuals (Siracusa et al., 2015). Treatment adherence of children with CF is even less (<50 %), which could be related to the chronic nature of the disease, and the complexity of the dosing regimens (Modi et al., 2006;Conway et al., 1996). In addition, ivacaftor is a substrate for cytochrome P-450 (CYP3A) enzymes which makes it prone to: 1) first-pass metabolism which decreases its oral bioavailability, and 2) food-drug interactions if orally administered with CYP-inducers or inhibitors (e. g., Seville oranges and grapefruit); resulting in sub-therapeutic or toxic drug concentrations, respectively (Condren and Bradshaw, 2013;Kapoor,Koolwal,and Singh, 2014). ...
Optimizing a sustained-release drug delivery system for the treatment of cystic fibrosis is crucial for decreasing the dosing frequency and improving patients’ compliance with the treatment regimen. In the current work, we developed an injectable PLGA microparticle formulation loaded with ivacaftor, a CFTR potentiator that increases the open probability of the CFTR anion channel, using a single emulsion solvent evaporation technique. We aimed to study the effect of different parameters on the characteristics of the prepared formulations to select an optimized microparticle formulation to be used in the in vivo pharmacokinetic study in mice. First, ivacaftor-loaded microparticles were prepared while varying the formulation parameters to study their effect on the formulations’ size, morphology, drug loading, encapsulation efficiency, and in vitro release profiles. All the prepared microparticles showed smooth spherical surfaces with internal diameters of 1.91– 6.93 μm, drug loading (DL) of 3.91 – 10.3%, percent encapsulation efficiencies (%EE) of 26.6 – 100%, and an overall slow cumulative release profile. We selected one formulation that showed the best combined %DL and %EE values (8.25, and 90.7%, respectively), with an average particle size of 6.83 μm, and a slow bi-phasic in vitro release profile (up to 6 weeks) to study its in vivo pharmacokinetics in comparison to solubilized ivacaftor following their subcutaneous (SC) and intravenous (IV) administration to mice, respectively. The injected microparticle formulation showed steady plasma levels of ivacaftor over a period of 28 days, and a 6-fold increase in AUC 0 – t (71.6 μg/mL*h) compared to the intravenously injected soluble ivacaftor (12.3 μg/mL*h). Our results suggest that this novel ivacaftor-loaded microparticle formulation could potentially eliminate the need for the frequent daily administration of ivacaftor by people with cystic fibrosis which could improve their compliance and ensure successful treatment outcomes.
... Therefore, factors affecting adherence to the regimen make it difficult for health providers and planners to determine the impact of the treatments on the health status of the individuals affected. [10] Transportation is a major obstacle to adherence because even though the treatment is free, weekly transport costs can become a barrier to treatment adherence. [11] Clubfoot in Saudi Arabia is considered as a public health issue, and 70% of individuals living in Saudi Arabia have never heard of or read about clubfoot deformity. ...
Purpose:
Clubfoot is among the most common musculoskeletal congenital anomalies. Poor understanding of clubfoot can cause lack of awareness that leads to complications in treating this condition because of late medical intervention. This is considered as a significant public health problem, especially in communities where the burden of clubfoot deformity remains unrecognized. We assessed the level of awareness and knowledge on clubfoot among residents of rural areas and determined the knowledge and attitudes of the public toward the risk factors and general consequences of clubfoot.
Methods:
This cross-sectional study, conducted from January to July 2021, included the general population of small city and rural area residents. The participants completed a self-administered survey on the web. The questionnaire was pre-tested in a pilot study to ensure comprehension and ease of administration.
Results:
Altogether, 41.6% of the participants recognized the scientific name of clubfoot in their native language, whereas 38.9% identified the disorder after they were shown a photograph of it. The most recognized risk factors of clubfoot according to the participants were family history (52.2%), complicated pregnancy (46.5%), and medications (43.4%). Only 8.8% of the participants considered casting the initial treatment of clubfoot.
Conclusion:
An individual's residential area plays a role in their level of awareness concerning clubfoot. Our results suggest that many educational interventions for clubfoot must be provided in rural areas, particularly regarding therapeutic options and plans of care.
... 48 Επίσης, η συμμόρφωση τόσο στη λήψη ενζύμων όσο και στη λήψη εισπνεόμενων φαρμάκων δεν υπερβαίνει το 50%. 53 Και στην περίπτωση αυτή η συμπεριφορική παρέμβαση έχει καλά αποτελέσματα. 43 Επί πλέον, η ποιότητα ζωής του πάσχοντος παιδιού αναγνωρίζεται ολοένα και περισσότερο ως μια σημαντική θεραπευτική θεώρηση και προς μέτρηση μεταβλητή. ...
Cystic fibrosis (CF) is the most common genetically transmitted deadly disease of the Caucasian race. The clinical picture of CF is highly variable and it can present from early infancy to several years later. Untoward events that may arise from the disease, and from its treatment, can challenge the patient and his(her) parents-caregivers, both emotionally and physically, resulting in a variety of psychosocial disturbances. A chronic illness, such as CF, can disrupt the life of a sick child and his or her family. As ways of dealing with this, the children, in order to avoid being harmed by the various stressors, may adopt a variety behaviors, thoughts and feelings, some positive and some negative, that serve to prevent, avoid or control the emotional distress. A corresponding psychosocial impact is observed in the other family members. This paper summarizes the various psychosocial characteristics associated with CF and the coping strategies of the affected children and their families, based on the age group, as they grow and develop throughout during the course of the disease.
... Despite the benefits of CF treatments, medication adherence among individuals with CF remains low, ranging from 33% to 76%. [49][50][51] Adherence of CF adults to medication regimens has been documented as problematic. 52,53 Poor adherence to medication is associated with adverse clinical outcomes in CF. 54 Adherence to recommended treatment regimen is influenced by the extent of treatment burden, having the time to do treatment, F I G U R E 5 (A,B) Strategies to improve therapeutic adherence having a routine, forgetting to do therapy, a person's identity, perceptions of control, social support, and knowledge and interaction with health professionals. ...
Background
The goal of mucoactive therapies in cystic fibrosis (CF) is to enhance sputum clearance and to reduce a progressive decline in lung function over the patient's lifetime. We aimed to investigate the level of consensus among specialists from Italian CF Centers on appropriateness of therapeutic use of dornase alfa (rhDNase) for CF patients.
Method
A consensus on appropriate prescribing in CF mucoactive agents was appraised by an online Delphi method, based on a panel of 27 pulmonologists, coordinated by a Scientific Committee of six experts in medical care of patients with CF.
Results
Full or very high consensus was reached on several issues related to therapeutic use of dornase alfa for CF patients in clinical practice.
Conclusions
The consensus reached on a number of topics regarding use of mucoactive agents in patients with CF can help guide clinicians in daily practice based on expert experience and define the most appropriate therapeutic strategy for the individual patient.
... Recruitment took place sequentially on random visit days to minimize selection bias. The simple study design allowed participation regardless of the use of inhaled antibiotics, inhalation device, antibiotic type, or infection.A limitation of the study was the use of self-reporting, as this method has been shown to systematically overestimate adherence when compared to objective measures.28,29 Specifically, in regard to our conclusions, participants may be more ready to admit partial nonadherence than complete nonadherence. ...
Background:
Inhaled antibiotics are an important part of cystic fibrosis (CF) airway disease management and should be individualized to fit the microorganism and match patient needs. To investigate the implementation of personalised treatment, this study mapped the use of different types of inhaled antibiotics and adherence patterns.
Method:
We performed individual structured interviews in a cross-sectional study at the CF Centre in Copenhagen, Denmark. Patients with CF older than 15 years attending clinical consultations were included. Clinical data were obtained from centralized databases.
Results:
Among 149 participants, 107 (72%) had indication for treatment with inhaled antibiotics. In this group, 97 (91%) reported use of inhaled antibiotics within the last 12 months. Change from one inhaled antibiotic to another during that period was reported by 31 (29%), and 17 (25%) with Pseudomonas aeruginosa had used off-label antibiotics. Adherence to minimum one daily dose of antibiotic was reported by 78%, whilst adherence to all daily doses was 28 percentage-points lower. Skipping inhalations was due to side effects and doubt about the effect in less than 5% of cases.
Conclusion:
Change of inhaled antibiotics and use of off-label antibiotics for inhalation were common and side effects were a rare cause of non-adherence. This suggests satisfactory implementation of the principle of tailored antibiotic inhalation prescription in the Copenhagen CF-population. Adherence to at least one daily inhalation dose was markedly higher than adherence to multiple daily inhalations. This article is protected by copyright. All rights reserved.
... Low adherence to these treatments is associated with exacerbations and decreases in lung function [10][11][12][13][14][15]. Despite the benefits of treatment, objectively measured adherence to preventative inhaled treatments is between 30 and 50% [16,17]. Subjective self-report measurements-the norm in routine practice-substantially overestimate adherence rates [16]. ...
Background Preventative inhaled treatments preserve lung function and reduce exacerbations in cystic fibrosis (CF). Self-reported adherence to these treatments is over-estimated. An online platform (CFHealthHub) has been developed with patients and clinicians to display real-time objective adherence data from dose-counting nebulisers, so that clinical teams can offer informed treatment support. Methods In this paper, we identify pre-implementation barriers to healthcare practitioners performing two key behaviours: accessing objective adherence data through the website CFHealthHub and discussing medication adherence with patients. We aimed to understand barriers during the pre-implementation phase, so that appropriate strategy could be developed for the scale up of implementing objective adherence data in 19 CF centres. Thirteen semi-structured interviews were conducted with healthcare practitioners working in three UK CF centres. Qualitative data were coded using the theoretical domains framework (TDF), which describes 14 validated domains to implementation behaviour change. Results Analysis indicated that an implementation strategy should address all 14 domains of the TDF to successfully support implementation. Participants did not report routines or habits for using objective adherence data in clinical care. Examples of salient barriers included skills, beliefs in consequences, and social influence and professional roles. The results also affirmed a requirement to address organisational barriers. Relevant behaviour change techniques were selected to develop implementation strategy modules using the behaviour change wheel approach to intervention development. Conclusions This paper demonstrates the value of applying the TDF at pre-implementation, to understand context and to support the development of a situationally relevant implementation strategy.
... Low adherence to these treatments is associated with exacerbations and decreases in lung function [10][11][12][13][14][15]. Despite the benefits of treatment, objectively measured adherence to preventative inhaled treatments is between 30 and 50% [16,17]. Subjective self-report measurements-the norm in routine practice-substantially overestimate adherence rates [16]. ...
Background
Preventative inhaled treatments preserve lung function and reduce exacerbations in cystic fibrosis (CF). Self-reported adherence to these treatments is over-estimated. An online platform (CFHealthHub) has been developed with patients and clinicians to display real-time objective adherence data from dose-counting nebulisers, so that clinical teams can offer informed treatment support.
Methods
In this paper, we identify pre-implementation barriers to healthcare practitioners performing two key behaviours: accessing objective adherence data through the website CFHealthHub and discussing medication adherence with patients. We aimed to understand barriers during the pre-implementation phase, so that appropriate strategy could be developed for the scale up of implementing objective adherence data in 19 CF centres.
Thirteen semi-structured interviews were conducted with healthcare practitioners working in three UK CF centres. Qualitative data were coded using the theoretical domains framework (TDF), which describes 14 validated domains to implementation behaviour change.
Results
Analysis indicated that an implementation strategy should address all 14 domains of the TDF to successfully support implementation. Participants did not report routines or habits for using objective adherence data in clinical care. Examples of salient barriers included skills, beliefs in consequences, and social influence and professional roles. The results also affirmed a requirement to address organisational barriers. Relevant behaviour change techniques were selected to develop implementation strategy modules using the behaviour change wheel approach to intervention development.
Conclusions
This paper demonstrates the value of applying the TDF at pre-implementation, to understand context and to support the development of a situationally relevant implementation strategy.
... Due to the ongoing monitoring that occurred over the course of the CHAMP trial, we expected average medication adherence rates to be consistent with or higher than rates previously reported (64-75%) among pediatric headache populations receiving standard clinical care that included a prescription preventive medication (Kroon Van Diest et al., 2016). In line with the pediatric adherence literature in other chronic illness populations, we anticipated that self-reported medication adherence would be higher than pill count and serum assay measures (Bender et al., 2000;Greenley et al., 2012;Hommel et al., 2009;Loiselle et al., 2016;Modi et al., 2006;Yang et al., 2018). ...
Objective
Examine preventive medication adherence among youth with migraine.
Methods
Adherence (self-report, pill count, and blood serum drug levels) was assessed as an ancillary study that utilized data from 328 CHAMP Study participants (ages 8–17). CHAMP was a multisite trial of preventive medications. Participants completed a prospective headache diary during a six-month active treatment period during which youth took amitriptyline, topiramate, or placebo pill twice daily. Self-reported medication adherence was collected via daily diary. At monthly study visits, pill count measures were captured. At trial month 3 (trial midpoint) and 6 (end of active trial), blood serum drug levels were obtained. Self-report and pill count adherence percentages were calculated for the active trial period, at each monthly study visit, and in the days prior to participants’ mid-trial blood draw. Percentages of nonzero drug levels were calculated to assess blood serum drug level data. Adherence measures were compared and assessed in context of several sociodemographic factors. Multiple regression analyses investigated medication adherence as a predictor of headache outcomes.
Results
Self-report and pill count adherence rates were high (over 90%) and sustained over the course of the trial period. Serum drug level adherence rates were somewhat lower and decreased significantly (from 84% to 76%) across the trial period [t (198) = 3.23, p = .001]. Adherence measures did not predict headache days at trial end; trial midpoint serum drug levels predicted headache-related disability.
Conclusions
Youth with migraine can demonstrate and sustain relatively high levels of medication adherence over the course of a clinical trial.
... Finally, a study (Modi et al., 2006) reports data of great interest regarding the application of mHealth, since it examines the differences between subjective measures (or selfreported and reported by caregivers) and objective measures based mainly on mHealth, considering that objective physical adaptation is much lower than subjectively reported adaptation, and as such the use of both methods is recommended. The objective measures in the study are also considered to be comparable to each other. ...
Cystic fibrosis (CF) is a rare disease that severely compromises health and interferes with the lives of those who suffer from it and is especially challenging in adolescence. The use of tools such as MHealth may benefit the physical and psychological health of adolescents with CF. Therefore, this study aims to examine the benefits of MHealth in adolescents with CF through a systematic review. A search of the scientific literature following the PRISMA guidelines was conducted in the ProQuest Central, PubMed, Web Of Science, Embase and ínDICE databases, resulting in 186 studies, of which seven were selected (based on inclusion and exclusion criteria). Two blinded evaluators conducted the searches, the selection and data extraction process and the quality evaluation of the studies. The agreement between evaluators was excellent in all cases (Kappa ranged from .78 to .96). 214 pediatric CF patients (61.71% female) participated in the final analysis. The mean age was 12.76 years. The studies evaluated different types of mHealth tools, with greater homogeneity in the independent and dependent variables. The quality of the studies analyzed was poor, since these had small samples selected for convenience, conducted non-experimental and low-quality designs, recorded few variables, and their statistical analyses were not sufficiently robust. Further research is needed in this field, improving research designs and considering physical and psychological adjustment variables, as well as patients and family members in the process of health improvement.
... Low adherence to these treatments is associated with exacerbations and decreases in lung function [10][11][12][13][14][15]. Despite the bene ts of treatment, objectively-measured adherence to preventative inhaled treatments is between 30 to 50% [16,17]. Subjective self-report measurements -the norm in routine practice -substantially overestimate adherence rates [16]. ...
Background
Preventative inhaled treatments preserve lung function and reduce exacerbations in Cystic Fibrosis (CF). Self-reported adherence to these treatments is over-estimated. An online platform (CFHealthHub) has been developed with patients and clinicians to display real-time objective adherence data from dose-counting nebulisers, so that clinical teams can offer informed treatment support.
Methods
In this paper, we identify pre-implementation barriers to healthcare practitioners performing two key behaviours: accessing objective adherence data through the website CFHealthHub and discussing medication adherence with patients. We aimed to understand barriers during the pre-implementation phase, so that appropriate strategy could be developed for the scale up of implementing objective adherence data in 19 CF centres.
Thirteen semi-structured interviews were conducted with healthcare practitioners working in three UK CF centres. Qualitative data were coded using the Theoretical Domains Framework (TDF), which describes 14 validated domains to implementation behaviour change.
Results
Analysis indicated that an implementation strategy should address all 14 domains of the TDF to successfully support implementation. Participants did not report routines or habits for using objective adherence data in clinical care. Examples of salient barriers included skills, beliefs in consequences, and social influence and professional roles. The results also affirmed a requirement to address organisational barriers. Relevant behaviour change techniques were selected to develop implementation strategy modules using the behaviour change wheel approach to intervention development.
Conclusions
This paper demonstrates the value of applying the TDF at pre-implementation, to understand context and to support the development of a situationally relevant implementation strategy.
Contribution to the literature
· Research indicates that the implementation of healthcare innovations may be more likely to succeed when context and theory are taken into consideration.
· In this study, healthcare professionals identified barriers to two behaviours that were key to the implementation of a national Cystic Fibrosis (CF) healthcare innovation. By coding barriers to the Theoretical Domains Framework (TDF), a contextually relevant implementation strategy was developed, with a focus on clinician behaviour change.
· The study highlights the challenges CF teams face when implementing new remote monitoring of medication adherence, and provides an important opportunity to apply the TDF in the pre-implementation phase of a healthcare innovation.
... .uk), which creates complex parenting challenges due to demanding daily treatment regimens (Modi et al., 2006). These include daily medications and physiotherapy, a high calorie diet, pancreatic enzymes at mealtimes, and regular exercise. ...
Objectives: Parents of a child with cystic fibrosis (CF) are at increased risk of anxiety and depression. We examine the feasibility and acceptability of nurturing parents (NP) mindfulness-based parent well-being group in CF using a mixed methods design. NP is an 8 week group designed to help parents cultivate (a) resilience to stress, (b) kindness toward themselves, and (c) awareness of self when communicating. Method: Mothers (N = 12) rated individual and group goals and completed measures of dispositional mindfulness, interpersonal mindfulness in parenting, anxiety, depression, and parenting stress, pre-NP and post-NP. Qualitative data from semistructured interviews were analyzed using thematic analysis. Results: Participants who completed the NP group (n = 9; 75%) reported improvements post-NP in dispositional and interpersonal mindfulness and in at least one group goal. Clinically significant improvements were found for mothers reporting pre-NP anxiety (n = 2) or depression (n = 2) in the clinical range. Qualitative themes included: (a) gaining self-awareness and choice, (b) connection to others not defined by CF, and (c) validating self-care. Conclusions: Mothers reported psychological benefits of NP group and preferences that may promote retention. Findings may inform clinical practice. A future pilot trial of efficacy in CF may be feasible.
... Mucoactive therapies to augment mucociliary clearance and to control infection and inflammation are prescribed as maintenance therapies to improve lung function and prevent pulmonary exacerbations. Despite the benefits of CF treatments, medication adherence among individuals with CF remains low, ranging from 33% to 76% [46][47][48] . Adherence of CF adults to medication regimens has been documented as problematic 49,50 . ...
Background: The goal of mucoactive therapies in cystic fibrosis (CF) is to enhance sputum clearance and to reduce a progressive decline in lung function over the patient’s lifetime. We aimed to investigate the level of consensus among specialists from Italian CF Centers on appropriateness of therapeutic use of dornase alfa (rhDNase) for CF patients. Method: A consensus on appropriate prescribing in CF mucoactive agents was appraised by an online Delphi method, based on a panel of 27 pulmonologists, coordinated by a Scientific Committee of six experts in medical care of patients with CF. Results: Full or very high consensus was reached on several issues related to therapeutic use of dornase alfa for CF patients in clinical practice. Conclusions: Modified Delphi method was used to define the most appropriate use of dornase alfa in routine CF to improve lung function and long-term outcomes in patients, in agreement with international guidelines on CF management.
... В США было проведено ис следование среди детей, больных муковисцидозом, получающих терапию ингаляционным тобрами цином. Показатели соблюдения режима терапии, основанные на ответах самих пациентов или их ро дителей, в этом исследовании были 83-85 %, при этом аналогичный показатель, основанный на дан ных ежедневных телефонных дневников, не превы шал 36 % [36]. ...
... Cette différence est reliée probablement au retard diagnostique par défaut de dépistage néonatal.La dénutrition était également fréquente dans notre série = 36% ; en dessous du taux de dénutrition des séries iranienne 80%(14) et tunisienne 53%(9).L'insuffisance pancréatique exocrine, et notamment persistante, est fréquente dans notre série ; et ce malgré le traitement substitutif instauré chez tous nos patients. Ceci pourrait être expliquée par la non-adhésion des familles à l'enzymothérapie substitutive : en effet, des taux élevés d'échec ont déjà été décrits dans les pays développés avec une compliance ne dépassant pas les 50%(7,15). ...
Introduction. La mucoviscidose reste une affection
potentiellement sévère, responsable d’une morbimortalité élevée dans notre pays en raison du retard
diagnostique et de prise en charge des enfants vu
l’absence de dépistage néonatal. Objectif. Présenter
les signes cliniques digestifs et hépatobiliaires des
enfants atteints de mucoviscidose au diagnostic et lors
de leur suivi. Patients et méthodes. Etude
descriptive, transversale et rétrospective conduite au
niveau du service de pneumo-allergologie de l’EHS
Canastel « Boukhrofa Abdelkader » à Oran, entre 2000
et 2019, concernant les dossiers des enfants avec un
diagnostic confirmé de mucoviscidose. Résultats. Sur
51 dossiers d’enfants colligés (49% de garçons, âge
moyen = 6.68 +/- 4.24 années), la triade classique avec
diarrhée, dénutrition et atteinte pulmonaire était le
premier motif d’hospitalisation avec 41% des enfants.
Aussi, à l’admission, la diarrhée chronique avec
stéatorrhée était présente dans 82,4% des cas, avec
11.8% de déshydratation. Trente-six pour cent (36%)
des enfants présentaient également une dénutrition
associée. Concernant le système hépatobiliaire, 10%
des enfants présentaient une hépatomégalie clinique,
avec une lithiase vésiculaire dans un seul cas. Un seul
enfant a présenté un prolapsus rectal. Sur le plan
thérapeutique nutritionnel, tous les enfants ont reçu
des extraits pancréatiques. L’évolution des diarrhées
était globalement favorable ; le pourcentage des
enfants diarrhéiques étant passé de 82.4% à 37.25%
avec une amélioration de l’index de masse corporelle
(IMC) chez 42.55% des malades. Conclusion. Les
manifestations hépato-digestives sont au premier
plan au cours de la mucoviscidose : dans notre
cohorte, tous les patients ont présenté au moins un
signe d’appel digestif durant leur suivi. Leur
reconnaissance et surtout leur prise en charge
précoces sont des étapes essentielles en vue
d’améliorer le pronostic des enfants atteints de
mucoviscidose.
... Non-compliance is a major healthcare problem. Assessed average non-compliance rates range from around 25% (Dimatteo, 2004) to approximately 50% for chronic diseases (WHO, 2003), such as children with Cystic Fibrosis (Modi et al., 2006). The annual costs per person of non-compliance are estimated to range from $5271 to $52341 (in 2015 US$), and annual total costs in the USA range from $100 to $290 billion (in US$) (Cutler et al., 2018). ...
... In the face of this immense treatment burden, lack of treatment adherence was identified as the leading cause for treatment failure (12). Compared to electronic monitoring, which shows adherence to only 30-50% of all prescribed treatments, self-and clinician-reported adherence overestimate adherence substantially (11,(13)(14)(15). In the current standard of care, the CF physician has no objective information on the patient's adherence, state of health and quality of life between the scheduled visits. ...
Background
The extend of lung disease remains the most important prognostic factor for survival in patients with cystic fibrosis (CF), and lack of adherence is the main reason for treatment failure. Early detection of deterioration in lung function and optimising adherence are therefore crucial in CF care. We implement a randomized controlled trial to evaluate efficacy of telemonitoring of adherence, lung function, and health condition in combination with behavior change interventions using innovative digital technologies.
Methods
This is a multi-centre, randomized, controlled, non-blinded trial aiming to include 402 patients ≥ 12 years-of-age with CF. A standard-of-care arm is compared to an arm receiving objective, continuous monitoring of adherence to inhalation therapies, weekly home spirometry using electronic devices with data transmission to patients and caring physicians combined with video-conferencing, a self-management app and professional telephone coaching. The duration of the intervention phase is 18 months. The primary endpoint is time to the first protocol-defined pulmonary exacerbation. Secondary outcome measures include number of and time between pulmonary exacerbations, adherence to inhalation therapy, changes in forced expiratory volume in 1 s from baseline, number of hospital admissions, and changes in health-related quality of life. CF-associated medical treatment and care, and health care related costs will be assessed by explorative analysis in both arms.
Discussion
This study offers the opportunity to evaluate the effect of adherence interventions using telemedicine capable devices on adherence and lung health, possibly paving the way for implementation of telemedicine in routine care for patients with CF.
Trial registration : This study has been registered with the German Clinical Trials Register (Identifier: DRKS00024642, date of registration 01 Mar 2021, URL: https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00024642 ).
... 5 Despite the central role ACTs play in improving pulmonary secretion clearance and helping to maintain lung function, patient adherence is challenging because these therapies are time-consuming and cumbersome for patients to complete daily. Studies have reported low adherence to ACTs in all age groups (ie, children, [6][7][8] adolescents, 8,9 and adults [10][11][12], with adherence declining as patients age and their daily routines become more complex. ...
Background:
Airway clearance techniques (ACTs), including high-frequency chest wall oscillation (vest therapy), are important for maintaining lung function for patients with cystic fibrosis, but daily completion of ACTs is time-consuming and cumbersome. Patient adherence is a persistent challenge, and adherence data are largely patient reported, which may reduce accuracy. To provide definitive adherence data, this study utilized a Bluetooth-enabled vest therapy system to remotely collect objective adherence data from a cohort of pediatric subjects.
Methods:
Vest usage data were collected over a 12-month period and compared to each subject vest prescription. Because vest prescriptions are multifaceted, we developed metrics to examine adherence to the various facets (eg, daily treatment, treatments per day, treatment duration, frequency settings, and frequency and pressure settings combined) as well as an overall adherence metric.
Results:
Among the 73 enrolled subjects, 62 (50% male, age range 2-19 y) completed the study. Among adolescent subjects age 13-19 y, average adherence to daily vest therapy (44.0%) was significantly lower than that among subjects 0-6 y old (77.8%) and subjects 7-12 y old (89.5%). As more prescribed therapy components were combined into a single adherence metric, all age groups declined in mean adherence rates, with overall adherence a decreasing function of age.
Conclusions:
Employing new technology to remotely collect vest usage data allows for a granular examination of vest therapy adherence. While maintaining high levels of treatment adherence becomes increasingly difficult as children age, we also found substantial reductions in adherence rates among all age groups when more complex aspects of therapy prescriptions, such as frequency and pressure settings, were examined. These data illustrate areas providers and care teams can focus on to improve patient adherence to vest prescriptions.
... Adherence to treatment is of the utmost importance in CF, and, due to the significant burden of treatment, poor adherence remains a significant problem, being as low as 40-50%. 31,32 This results in negative health outcomes, including progression of lung disease and rate of pulmonary exacerbations. 33 Due to the retrospective nature of the study, we are unable to provide daily hours of use for NIV; similarly, we cannot provide data relative to the adherence to the background CF treatment. ...
Background:
Noninvasive ventilation (NIV) is routinely used to treat patients with cystic fibrosis and respiratory failure. However, evidence on its use is limited, with no data on its role in disease progression and outcomes. The aim of this study was to assess the indications of NIV use and to describe the outcomes associated with NIV in adults with cystic fibrosis in a large adult tertiary center.
Methods:
A retrospective analysis of data captured prospectively on the unit electronic patient records was performed. All patients with cystic fibrosis who received NIV over a 10-y period were included in the study. A priori, 2 groups were identified based on length of follow-up, with 2 subgroups identified based on duration of NIV treatment.
Results:
NIV was initiated on 64 occasions. The duration of follow-up was categorized as > 6 months or < 6 months in 31 (48.4%) and 33 (51.6%) occasions, respectively. The most common indications for starting NIV were chronic (48.5%) and acute (32.8%) hypercapnic respiratory failure. Among those with a follow-up > 6 months, subjects who stopped using NIV early showed a steady median (interquartile range) decline in FEV1 (pre-NIV: -0.04 [-0.35 to 0.03] L/y vs post-NIV: -0.07 [-0.35 to 0.01] L/y, P = .51), while among those who continued using it had an improvement in the rate of decline (pre-NIV: -0.25 [-0.52 to -0.02] L/y vs post-NIV: -0.07 [-0.13 to 0.16] L/y, P = .006). No differences in intravenous antibiotic requirement or pulmonary exacerbations were noted with the use of NIV. Pneumothorax and massive hemoptysis occurred independently in 4 cases.
Conclusions:
NIV is being used in cystic fibrosis as adjunct therapy for the management of advanced lung disease in a similar fashion to other chronic respiratory conditions. Adherence to NIV treatment can stabilize lung function but does not reduce pulmonary exacerbations or intravenous antibiotic requirement.
... 25 Modi et al., em 2006, realizaram um estudo que avaliou a adesão por meio de diferentes métodos, comparando-os com o monitoramento eletrônico, o qual corresponderia à forma mais precisa de investigação, e constataram que a abordagem autorreferida teve resultados bastante discrepantes em relação aos demais métodos, superestimando a adesão. 26 Assim, o método autorreferido utilizado no presente trabalho pode ter contribuído para os elevados percentuais de adesão obtidos. Destaque-se, contudo, que estudo prévio, utilizando metodologia de mensuração de maior acurácia, observou elevada taxa de adesão em pacientes pediátricos com FC, sugerindo que a AT pode ser mais elevada entre eles. ...
Objective:
To evaluate the level of self-referenced treatment adherence (TA) and its association with clinical and sociodemographic variables in patients with cystic fibrosis assisted at a reference center, as well as compare the level of self-referenced TA with that presumed by the multidisciplinary team.
Methods:
This is a cross-sectional study that included children and adolescents aged between 0-20 years with cystic fibrosis. Adolescents older than 14 years or their guardians, when younger than 14 years old, were interviewed using a standardized questionnaire. Professionals from the multidisciplinary clinic filled out another form with their impressions of the patients’ TA. Clinical and laboratory data were obtained in the medical records. The TA was considered satisfactory if the total adherence index (TAI) was equal or higher than 80%.
Results:
53 patients were included with a median age of 112 months. The mean TAI was 83.2%. The mean TAIs for dornase alfa, pancreatic enzymes, continued use of inhaled tobramycin, vitamins supplements, nutritional supplements and dietary orientation was respectively: 86.1; 96.6; 78.6; 88.1; 51.8 and 78%. Children younger than 14 years presented better TA (p=0.021). The correlation between the self-referenced TA and the one presumed by the multidisciplinary team ranged from 0,117 to 0.402, being higher for Psychology and Nutrition professionals.
Conclusions:
The TAI was high particularly among children younger than 14 years. There was a positive correlation between the self-referenced TA and the one presumed by the Psychology (p=0.032) and the nutrition (p=0.012) professionals.
... Better knowledge of factors which are linked to nonadherence to thiopurines in children will assist in the design of suitable practical interventions to promote adherence in this poorly studied population. e use of a multimethod approach in assessing adherence helps to decrease bias associated with using a single method [35]. e current study utilized both subjective (selfreported questionnaires) and objective methods (measuring AZA/6-MP metabolites in packed RBCs) for adherence assessment. ...
Background. Measurement of the degree of adherence is a key element for the evaluation of treatment efficacy and safety; thus, adherence plays an important role in clinical research and practice. The aim of this study was to investigate medication adherence in children with inflammatory bowel disease (IBD) utilizing a multimethod assessment approach. A further aim was to examine factors that can influence adherence within this population. Methods. Medication adherence in 47 children (age range 3 to 17 years) with IBD in three centers in Northern Ireland and Jordan was assessed via subjective (parent and child versions of the Medication Adherence Report Scale (MARS) specific questionnaire) and objective methods, that is, high-performance liquid chromatography (HPLC) determination of the 6-mercaptopurine (6-MP) and azathioprine (AZA) metabolites in packed red blood cell samples taken during a clinic visit. Beliefs about prescribed medicines were also assessed in parents/guardians using the Beliefs about Medicines Questionnaire (BMQ). Results. An overall nonadherence to AZA/6-MP therapy in children with IBD was found to be 36.17% (17 out of 47 patients were classified as nonadherent using at least one of the assessment methods). A total of 41 patients (91.1%) were classified as adherent to AZA or 6-MP using the blood sampling, while adherence rates using the MARS questionnaire completed by children and parents/guardians were 60.6% and 72.7%, respectively. The latter provides a more longitudinal measure of adherence. Child self-reported nonadherence rates were significantly higher than parent/guardian reported rates (). Binary logistic regression analysis identified age to be independently predictive of adherence, with adolescents (children aged ≥ 13 years old) more likely to be classified as nonadherent. Regarding the BMQ, when parental/guardian necessity beliefs outweighed concerns, that is, higher scores in the necessity-concern differential (NCD), adolescents were more likely to be classified as adherent. Conclusion. Results provide evidence for ongoing adherence challenges in the paediatric population with IBD. It is recommended that parents/guardians (particularly of older children) and older children themselves, should receive enhanced counselling and education about their prescribed medicines.
1. Introduction
Inflammatory bowel disease (IBD) describes a range of immune-mediated disorders resulting in chronic and intermittent gastrointestinal inflammation [1]. Symptoms of IBD include abdominal pain, recurrent diarrhea, weight loss, fever, lethargy, anorexia, and puberty delay in children [2]. Treatment of IBD includes a range of oral medications such as anti-inflammatories, immunomodulators, corticosteroids, and antibiotics [3]. Management of the disease may also involve the use of over-the-counter medications such as vitamins, iron and mineral supplements, dietary changes, infusions, or even surgery [3, 4]. Consequently, patients may have a complex medication regimen which can be overwhelming and give rise to concerns regarding adherence.
Adherence is defined as the degree to which patient medication taking behaviour corresponds with agreed healthcare providers' recommendations [5]. Adherence to treatment in IBD is a key element in the achievement of decreased disease activity, maintenance of periods of remission, and the achievement of adequate nutrition for the patient [5, 6]. Very few studies have examined adherence rates in children with IBD, and research in this area is largely restricted to the adult population [7]. Adherence in chronic paediatric diseases is a complicated matter as it can involve the whole family. In younger children, the parent or guardian is responsible for the administration of medications and ensuring that the disease is managed appropriately; however, as the child gets older, responsibility for taking medication transitions from parent to the older child. This latter transition has been shown to have a negative influence on adherence [8]. A systematic review reported a lack of medication adherence data in general in patients with IBD and indicated the need for further studies to investigate the impact of treatment adherence on clinical outcomes in these patients [9]. Despite the lack of a firm link between health outcomes and the level of adherence in children and adolescents with IBD, the adult literature suggests detrimental consequences as a result of nonadherence to the IBD regimen, with patients who are nonadherent being up to 5.5 times more likely to experience a relapse in symptoms [10]. Studies have suggested that many lifelong health management behaviours are established during adolescence and therefore understanding the factors that impact adolescents’ adherence to their IBD regimen could potentially be beneficial in improving lifelong IBD management [11].
During the adolescent years adhering to IBD treatment has been reported to be particularly problematic [12]. Mackner and Crandall reported medication adherence rates of 38% and 48% in a paediatric IBD sample according to parent and adolescent reports, respectively [13], while others have reported adherence rates as low as 25–35% in adolescents [14, 15]. As management of medicines in children and adolescents involves both parents and the patients themselves, feedback on adherence is commonly collected from both parties as an indirect measure of adherence. Barriers to medication adherence in adolescents with IBD include drug side effects, negative medication beliefs [16], and cognitive and physical developmental factors [17]. Studies in adults with IBD [18] and other long-term conditions [19] have also shown that nonadherence is related to patient beliefs about the treatment, for example, how they judge their personal need for a particular medication(s) relative to their concerns about potential adverse effects.
Hommel et al. [20] showed that in children with IBD, the nonadherence rate for azathioprine (AZA)/6-mercaptopurine (6-MP) was 6% using subjective assessment and 46% using biological assays [20]. Since self-report is likely to overestimate adherence, it is therefore generally recommended that multimethod approaches are used to assess medication taking behaviour [21, 22].
AZA and 6-MP are immune-suppressants with short half-lives (3 and 1.5 hours, respectively) and therefore measuring their metabolites, that is, 6-thioguanine nucleotides (6-TGNs) and 6-methylmercaptopurine (6-mMP), is a more consistent direct method for adherence assessment and for therapeutic drug monitoring. Intracellular accumulation of AZA/6-MP metabolites occurs over a period of 2–3 weeks and therefore provides an indicator of long-term adherence [23]. While 6-TGN is considered the most active metabolite of the thiopurines [24], 6-mMP is considered responsible for side-effects of thiopurine therapy [25].
The primary aim of the present study was to assess medication adherence in children/adolescents with IBD utilizing a multimethod adherence assessment approach. A further aim was to investigate factors that may affect medication adherence within this patient group.
2. Methods
The study was approved by the research Committees in Royal Medical Services in Jordan (reference number: TF 3/1/EC/3719/) and the office of Research Ethics Committees Northern Ireland (ORECNI) (reference number: 11/NI/0100). Children with IBD, aged ≤17 years and who were receiving AZA/6-MP for at least one month were invited to participate in the study. Patients were excluded from the study if the parent/guardian or child refused participation in the study or if the child had developmental delay as judged by his/her physician. Recruitment of children was conducted in two medical centres in Northern Ireland (the Royal Belfast Hospital for Sick Children (RBHSC) and Altnagelvin Area Hospital (AAH)) and one centre in Jordan (Queen Rania Al Abdullah Hospital for Children-Royal Medical Services). In Northern Ireland, eligible parents and their children were invited to participate in the study by sending a letter ahead of the clinic visit while in Jordan they were approached at the same day of the clinic. Informed written parental consent to participate in the research was obtained by a research nurse for each child together with child assent in children ≥6 years old.
For each recruited patient, data on patient demographics, current medications and medical history were obtained from his/her medical files. An aliquot of whole venous blood (one sample per patient; 2 mL volume) was taken from a routine clinical blood sample withdrawn from the child during attendance at routine outpatient clinic. All blood samples obtained from patients were processed into plasma and packed RBC samples and stored at−80°C prior to analysis using a validated HPLC analytical method [26] modified as shown below.
2.1. Questionnaires Administered to Patients and Their Parents/Guardians
The following questionnaires were provided to patients and their parents/guardians recruited into the study for self-completion at the clinic, as follows:
2.1.1. Medication Adherence Report Scale (MARS; Child and Parent/Guardian Versions) Questionnaire
The original parent and child versions of the Medication Adherence Report Scale (MARS) specific questionnaire were utilized to assess adherence of patients aged ≥ 11 years recruited in NI [27] while validated Arabic translated versions [28] were utilized in Jordan. Both versions have been shown to have good reliability [27, 28]. The parent version has 6 questions while the child version has 5 questions. In each version, item scores were summed and scaled to result in scores ranging from 1 to 5. Higher scores indicate higher levels of self-reported adherence. In the present study, a conservative 90% cut-off point for adherence was used; that is, a participant was considered to be adherent if the MARS score was ≥ 4.5 out of 5 [28, 29].
2.1.2. Beliefs About Medicines Questionnaire (BMQ) Specific
Beliefs about prescribed medicines were assessed in parents using the Beliefs about Medicines Questionnaire (BMQ) [30]. BMQ scores can be categorized into two subscales, that is, necessities and concerns. Views expressed about the necessity of the medication for maintaining or improving health describe the ‘necessity beliefs’ whereas beliefs about the potential adverse effects of taking medication are incorporated into the ‘concerns’ subscale [30]. The original English version of the BMQ was utilized for patients recruited in NI, while the validated Arabic version was utilized for patients recruited in Jordan [28].
There are 11 statements in the questionnaire each being coded as either a necessity (n = 5) or a concern (n = 6) and participants indicate their degree of agreement with each individual statement on a 5-point Likert scale, ranging from strongly disagree to strongly agree. The total necessity and concern scores are calculated separately before being compared to see if the participant’s overall view of their medications is that of necessity or concern. The scores of each necessity and concern scale were scaled to give scores ranging from 1 to 5. Higher scores indicate stronger beliefs in the perceptions represented by the scale. The balance of concerns relative to necessity is known as the necessity-concern differential (NCD). When the NCD is positive, necessity beliefs outweigh concerns and conversely when negative, concerns outweigh necessity beliefs [31].
2.1.3. Measurement of AZA/6-MP Metabolite Concentrations in Packed Red Blood Cell Samples
A sensitive, selective, and high-performance liquid chromatography (HPLC) method that was developed and validated in our lab previously [26] was utilized for determination of 6-MP metabolites after being modified as follows. The sample preparation step involved addition of 150 μl of water and 100 μl dithiothreitol (75 mg/mL) to the 100 μl of packed RBCs. The sample was vortexed for 1 minute after which 50 μl of perchloric acid (700 mL/L) was added and vortex-mixed for a further 30 seconds. After centrifugation at 13,000 × for 15 minutes, the clear supernatant layer was removed and heated for 45 min at 100°C using a heating block. An aliquot of 700 μL of water was added and then vortex-mixed for 10 seconds before being transferred to (MCX) SPE cartridges (1 ml/30 g; Waters®). The final eluent was then dried for 20 minutes under a stream of nitrogen at 37°C and reconstituted in 100 μL 0.05 M NaOH with vortex mixing for 1 minute. Samples were then subjected to HPLC with UV detection (322 nm and at 342 nm) using an Atlantis® (T3) dC18 column [150 mm × 4.6 mm; particle size, 3 μm; Waters] protected with a guard cartridge of similar chemistry (20 mm × 4.6 mm; particle size, 3 μm; Waters). The mobile phase solutions were degassed and filtered prior to use. Mobile phase A: 97% (0.02 M) phosphate buffer pH 2.25. Mobile phase B: acetonitrile. The mobile phase flow was a gradient (1 mL/minute) from 97% to 80% mobile phase A over 14 minutes followed by 11 minutes reequilibration with 97% mobile phase A. The assay limits of quantification for 6-mMPNs and 6-TGNs were 3.75 and 0.5 μM, respectively. Concentration ranges covered by the assay validation (ICH guidelines) were 3.75–300 μM for 6-mMPNs and 0.5–20 μM for 6-TGNs.
Analysis of blood samples was conducted at Queen’s University Belfast for patients recruited in NI and at the Pharmaceutical Research Center, Jordan University of Science and Technology for blood samples obtained from patients in Jordan.
2.1.4. Triangulation of Adherence Assessment Data
Adherence to thiopurines was assessed using a combination of subjective (MARS) and objective (metabolite concentrations). Adherence classification of individual patients was as follows:(a)If score was <4.5 using the parent/guardian MARS questionnaire, then the patient was deemed nonadherent.(b)If score was <4.5 using the child MARS questionnaire, then the patient was deemed nonadherent.(c)Levels of AZA/6-MP metabolites in packed RBCs were subjected to cluster analysis [29, 32]. The pattern of 6-mMP and 6-TGN metabolite concentrations in the IBD patients was investigated and patients were grouped according to their metabolite levels. The 20th percentile was used as a cut-off point. Patients who had both 6-TG and 6-mMP concentrations below the threshold (20th percentile) were classified as nonadherent [29].
Through triangulation of results from the different subjective and objective approaches, a patient was deemed as nonadherent if any of the assessment methods identified the patient as nonadherent.
2.2. Data Analysis
Descriptive statistics were used to describe the sample; the continuous variables were described using mean and standard deviation (SD); categorical variables were described using frequency and percentages. Group differences (adherent versus nonadherent) were explored using the Mann Whitney U test for continuous variables. Categorical variables were analyzed using Chi-squared analysis. If the expected frequency fell below 5, Fisher’s exact test was employed. The Kappa (κ) coefficient was used to assess the magnitude of agreement between each of the methods of adherence assessment. Univariate analysis was used to explore the relationship between adherent and nonadherent patient groups and patient age, gender, disease duration, and beliefs about medicine. Binary logistic regression was then utilized to determine independent predictors of adherence to thiopurine therapy.
All analyses were carried out using SPSS® software version 22. The significance level was set at 0.05.
3. Results
3.1. Patient and Disease Characteristics
Forty-seven eligible patients (N. Ireland, n = 31; Jordan, n = 16) agreed to take part in this cross-sectional study. Response rates are of course a challenge with all clinical trials since only those patients/parents who provide appropriate consent can join the research. In the present research, eleven patients declined to take part in the research in Northern Ireland out of total 48 patients (31 patients from RBHSC and 17 patients from AAH). The main reasons for refusal by parents/guardians were no interest in research (8 patients), time limitation (1 patient), or travel plans already in place (1 patient), while one child refused to participate due to the anticipated pain associated with the finger prick for the DBS sampling. Six patients were not approached for various reasons, for example, transfer to another clinic (5 patients) or patient stopped taking the drug (1 patient). Response rate in NI was 64.6%.
On the other hand, 23 patients were eligible for recruitment into the study in Jordan: 16 patients agreed to participate while 7 patients refused to participate due to lack of interest in the research. The response rate in Jordan was 69.6%.
Thirty children (63.8%) were diagnosed with Crohn’s disease, 14 (29.8%) were diagnosed with ulcerative colitis, and 3 patients (6.4%) had indeterminate colitis. The demographics and disease characteristics of the study sample are described in Table 1.
Parameters
IBD patients in Jordan
(N = 16)
IBD patients in NI
(N = 31)
Child age (years), median (range)
11 (3–15)
13.5 (3.9–17.4)
Child gender, n (%)
Male
7 (43.8)
20 (64.5)
Female
9 (56.3)
11 (35.5)
Disease duration (years), median (range)
Disease severity#, n (%)
2 (0.5–8)
2.5 (0.4–7.2)
Inactive
14 (87.5)
25 (80.6)
Mild/moderate
2 (12.5)
6 (19.4)
Severe
0 (0.0)
0 (0.0)
Number of medications, median (range)
4 (2–6)
3 (1–6)
Type of IBD, n (%)
Crohn’s disease
10 (62.5)
20 (64.5)
Ulcerative colitis
6 (37.5)
8 (25.8)
Indeterminate colitis
0 (0)
3 (9.7)
IBD medication type, n (%)
Azathioprine
16 (100.0)
20 (64.5)
6-mercaptopurine
0 (0.0)
11 (35.5)
Thiopurine dose mg/kg, median (range)
Azathioprine
2.0 (1.0–2.8)
2.1 (0.9–2.7)
6-mercaptopurine
—
0.9 (0.7–1.1)
Metabolite concentrations
6-TGNs (μM), median (IQR)
4.55 (3.54–6.04)
4.85† (4.31–7.08)
6-mMPNs (μM), median (IQR)
10.18 (4.64–16.68)
13.23†† (8.09–18.34)
NI: Northern Ireland. IQR: interquartile range. #The overall disease severity of each participating child was assessed by their physician, using the Paediatric Crohn’s Disease Activity Index for those with Crohn’s disease and using the Paediatric Ulcerative Colitis Activity Index for those with ulcerative colitis/indeterminate colitis. 6-TGN levels equivalent to 327.6 pmol/8 10⁸ erythrocytes. 6-MPN levels equivalent to 746.5 pmol/8 10⁸ erythrocytes. †6-TGN levels equivalent to 349.2 pmol/8 10⁸ erythrocytes. ††6-MPN levels equivalent to 970.2 pmol/8 10⁸ erythrocytes.
Objective
Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF.
Methods
37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence.
Results
43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (β = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant.
Conclusions
When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.
Neste livro, convidamos você a explorar um universo diversificado de temas que abrangem o vasto campo da saúde e da medicina. Ao longo dos capítulos, são apresentadas questões que vão desde os desafios do adoecimento psíquico na contemporaneidade até a análise minuciosa das infecções relacionadas à assistência à saúde. Cada capítulo oferece uma perspectiva para compreender a complexidade relacionada ao âmbito clínico quanto, mas também, no contexto regulatório. Discutiremos a importância do mindfulness no ambiente hospitalar, exploraremos vírus transmitidos por alimentos, examinaremos a aplicação da lei dos semelhantes na homeopatia e adentraremos o intrincado universo da farmacoterapia em pacientes pediátricos com fibrose cística. À medida que avançamos nos capítulos, veremos como o trabalho docente pode influenciar o adoecimento psíquico, como um boletim informativo pode melhorar a gestão hospitalar e como os farmacêuticos desempenham um papel vital na revisão da terapia medicamentosa de pacientes com doenças renais crônicas. Este livro é uma jornada pela complexidade e diversidade da saúde e da medicina, proporcionando insights valiosos para estudantes, profissionais da saúde e todos aqueles interessados em compreender os desafios e avanços nessa área.
Background:
Cystic fibrosis (CF) is a life-limiting genetic disorder predominantly affecting the lungs and pancreas. Airway clearance techniques (ACTs) and exercise therapy are key components of physiotherapy, which is considered integral in managing CF; however, low adherence is well-documented. Poor physiotherapy adherence may lead to repeated respiratory infections, reduced exercise tolerance, breathlessness, reduced quality of life, malaise and reduced life expectancy, as well as increased use of pharmacology, healthcare access and hospital admission. Therefore, evidence-based strategies to inform clinical practice and improve adherence to physiotherapy may improve quality of life and reduce treatment burden.
Objectives:
To assess the effects of interventions to enhance adherence to airway clearance treatment and exercise therapy in people with CF and their effects on health outcomes, such as pulmonary exacerbations, exercise capacity and health-related quality of life.
Search methods:
We searched the Cochrane Cystic Fibrosis Trials Register, compiled from electronic database searches and handsearching of journals and conference abstract books. Date of last search: 1 March 2023. We also searched online trials registries and the reference lists of relevant articles and reviews. Date of last search: 28 March 2023.
Selection criteria:
We included randomised controlled trials (RCTs) and quasi-RCTs of parallel design assessing any intervention aimed at enhancing adherence to physiotherapy in people with CF versus no intervention, another intervention or usual care.
Data collection and analysis:
Two review authors independently checked search results for eligible studies and independently extracted data. We used standard procedures recommended by Cochrane and assessed the certainty of evidence using the GRADE system.
Main results:
Two RCTs (77 participants with CF; age range 2 to 20 years; 44 (57%) males) met the inclusion criteria of this review. One study employed an intervention to improve adherence to exercise and the second an intervention to improve adherence to ACT. Both studies measured outcomes at baseline and at three months, but neither study formally assessed our primary outcome of adherence in terms of our planned outcome measures, and results were dependent on self-reported data. Adherence to ACTs One RCT (43 participants) assessed using specifically-composed music alongside ACTs compared to self-selected or no music (usual care). The ACT process consisted of nebuliser inhalation treatment, ACTs and relaxation or antibiotic nebuliser treatment. We graded all evidence as very low certainty. This study reported adherence to ACTs using the Morisky-Green questionnaire and also participants' perception of treatment time and enjoyment, which may influence adherence (outcome not reported specifically in this review). We are uncertain whether participants who received specifically-composed music may be more likely to adhere at six and 12 weeks compared to those who received usual care, risk ratio (RR) 1.75 (95% confidence interval (CI) 1.07 to 2.86) and RR 1.56 (95% CI 1.01 to 2.40) respectively. There may not be any difference in adherence when comparing specifically-composed music to self-selected music at six weeks, RR 1.21 (95% CI 0.87 to 1.68) or 12 weeks, RR 1.52 (95% CI 0.97 to 2.38); or self-selected music to usual care at six weeks, RR 1.44 (95% CI 0.82 to 2.52) or 12 weeks, RR 1.03 (95% CI 0.57 to 1.86). The music study also reported the number of respiratory infections requiring hospitalisation at 12 weeks, with no difference seen in the risk of hospitalisation between all groups. Adherence to exercise One RCT (24 participants) compared the provision of a manual of aerobic exercises, recommended exercise prescription plus two-weekly follow-up phone calls to reinforce exercise practice over a period of three months to verbal instructions for aerobic exercise according to the CF centre's protocol. We graded all evidence as very low certainty. We are uncertain whether an educational intervention leads to more participants in the intervention group undertaking increased regular physical activity at three months (self-report), RR 3.67 (95% CI 1.24 to 10.85), and there was no reported difference between groups in the number undertaking physical activity three times per week or undertaking at least 40 minutes of physical activity. No effect was seen on secondary outcome measures of spirometry, exercise capacity or any CF quality of life domains. This study did not report on the frequency of respiratory infections (hospitalised or not) or adverse events.
Authors' conclusions:
We are uncertain whether a music-based motivational intervention may increase adherence to ACTs or affect the risk of hospitalisation for a respiratory infection. We are also uncertain whether an educational intervention increases adherence to exercise or reduces the frequency of respiratory infection-related hospital admission. However, these results are largely based on self-reported data and the impact of strategies to improve adherence to ACT and exercise in children and adolescents with stable CF remains inconclusive. Given that adherence to ACT and exercise therapy are fundamental to the clinical management of people with CF, there is an urgent need for well-designed, large-scale clinical trials in this area, which should conform to the CONSORT statement for standards of reporting and use appropriate, validated outcome measures. Studies should also ensure full disclosure of data for all important clinical outcomes.
Objective:
Our goal was to compare data collected from 3- and 7-day Infant with Clefts Observation Outcomes (iCOO) diaries.
Design:
Secondary data analysis of an observational longitudinal cohort study. Caregivers completed the daily iCOO for 7 days before cleft lip surgery (T0) and for 7 days after cleft lip repair (T1). We compared 3- and 7-day diaries collected at T0 and 3- and 7-day diaries collected at T1.
Setting:
United States.
Participants:
Primary caregivers of infants with cleft lip with and without cleft palate (N = 131) planning lip repair and enrolled in original iCOO study.
Main outcomes measure(s):
Mean differences and Pearson correlation coefficients.
Results:
Correlation coefficients were high for global impressions (>0.90) and scaled scores (0.80-0.98). Mean differences were small across iCOO domains at T0. T1 comparisons reflected the same pattern.
Conclusions:
Three-day diary data is comparable to 7-day diaries for measuring caregiver observations using iCOO across T0 and T1.
Purpose of review:
Guidelines for cystic fibrosis (CF) care recommend multidisciplinary teams see patients at least quarterly with frequent measurement of spirometry and collection of respiratory cultures. This can be burdensome for people with CF, particularly if they live far from a specialized care center. This has led to an interest in telehealth coupled with remote monitoring. We review the recent literature on these topics for people with CF.
Recent findings:
The COVID-19 pandemic accelerated a move toward remote delivery of CF care and multiple recent publications have reported on the feasibility of telehealth, remote spirometry, remote collection of respiratory cultures, adherence monitoring, cough assessment, symptom monitoring and activity tracking. Useful data can be obtained and both clinicians and patients have favorable opinions about remote delivery of healthcare, though the impact on clinical outcomes is not yet known.
Summary:
Telehealth and remote monitoring for people with CF is feasible and has grown in use, though it is too early to know how prominently these approaches will fit into routine care for CF.
This review summarises the experiences of young children and their families living with CF during the first five years of life following NBS diagnosis, as well as the options of psychosocial support available to them. We present strategies embedded within routine CF care that focus on prevention, screening, and intervention for psychosocial health and wellbeing that constitute essential components of multidisciplinary care in infancy and early childhood.
Background:
Adherence to treatment, including inhaled therapies, is low in people with cystic fibrosis (CF). Although psychological interventions for improving adherence to inhaled therapies in people with CF have been developed, no previous published systematic review has evaluated the evidence for efficacy of these interventions.
Objectives:
The primary objective of the review was to assess the efficacy of psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (CF). The secondary objective was to establish the most effective components, or behaviour change techniques (BCTs), used in these interventions.
Search methods:
We searched the Cochrane Cystic Fibrosis Trials Register, which is compiled from electronic database searches and handsearching of journals and conference abstract books. We also searched databases (PubMed; PsycINFO; EBSCO; Scopus; OpenGrey), trials registries (World Health Organization International Clinical Trials Registry Platform; US National Institutes of Health Ongoing Trials Register ClinicalTrials.gov), and the reference lists of relevant articles and reviews, with no restrictions on language, year or publication status. Date of search: 7 August 2022.
Selection criteria:
We included randomised controlled trials (RCTs) comparing different types of psychological interventions for improving adherence to inhaled therapies in people with CF of any age, or comparing psychological interventions with usual care. We included quasi-RCTs if we could reasonably assume that the baseline characteristics were similar in both groups.
Data collection and analysis:
Two review authors independently assessed trial eligibility and completed data extraction, risk of bias assessments, and BCT coding (using the BCT Taxonomy v1) for all included trials. We resolved any discrepancies by discussion, or by consultation with a third review author as necessary. We assessed the certainty of the evidence using GRADE.
Main results:
We included 10 trials (1642 participants) in the review (children and adolescents in four trials; adults in five trials; and children and adults in one trial). Nine trials compared a psychological intervention with usual care; we could combine data from some of these in a number of quantitative analyses. One trial compared a psychological intervention with an active comparator (education plus problem-solving (EPS)). We identified five ongoing trials. Psychological interventions were generally multi-component and complex, containing an average of 9.6 BCTs (range 1 to 28). The two most commonly used BCTs included 'problem-solving' and 'instruction on how to perform the behaviour'. Interventions varied in their type, content and mode of delivery. They included a problem-solving intervention; a paper-based self-management workbook; a telehealth intervention; a group training programme; a digital intervention comprising medication reminders and lung function self-monitoring; a life-coaching intervention; a motivational interviewing (MI) intervention; a brief MI intervention (behaviour change counselling); and a digital intervention combined with behaviour change sessions. Intervention duration ranged from 10 weeks to 12 months. Assessment time points ranged from six to eight weeks up to 23 months. Psychological interventions compared with usual care We report data here for the 'over six months and up to 12 months' time point. We found that psychological interventions probably improve adherence to inhaled therapies (primary outcome) in people with CF compared with usual care (mean difference (MD) 9.5, 95% confidence interval (CI) 8.60 to 10.40; 1 study, 588 participants; moderate-certainty evidence). There was no evidence of a difference between groups in our second primary outcome, treatment-related adverse events: anxiety (MD 0.30, 95% CI -0.40 to 1.00; 1 study, 535 participants), or depression (MD -0.10, 95% CI -0.80 to 0.60; 1 study, 534 participants), although this was low-certainty evidence. For our secondary outcomes, there was no evidence of a difference between groups in terms of lung function (forced expiratory volume in one second (FEV1) % predicted MD 1.40, 95% CI -0.20 to 3.00; 1 study, 556 participants; moderate-certainty evidence); number of pulmonary exacerbations (adjusted rate ratio 0.96, 95% CI 0.83 to 1.11; 1 study, 607 participants; moderate-certainty evidence); or respiratory symptoms (MD 0.70, 95% CI -2.40 to 3.80; 1 study, 534 participants; low-certainty evidence). However, psychological interventions may improve treatment burden (MD 3.90, 95% CI 1.20 to 6.60; 1 study, 539 participants; low-certainty evidence). The overall certainty of the evidence ranged from low to moderate across these outcomes. Reasons for downgrading included indirectness (current evidence included adults only whereas our review question was broader and focused on people of any age) and lack of blinding of outcome assessors. Psychological interventions compared with an active comparator For this comparison the overall certainty of evidence was very low, based on one trial (n = 128) comparing an MI intervention to EPS for 12 months. We are uncertain whether an MI intervention, compared with EPS, improves adherence to inhaled therapies, lung function, or quality of life in people with CF, or whether there is an effect on pulmonary exacerbations. The included trial for this comparison did not report on treatment-related adverse events (anxiety and depression). We downgraded all reported outcomes due to small participant numbers, indirectness (trials included only adults), and unclear risk of bias (e.g. selection and attrition bias).
Authors' conclusions:
Due to the limited quantity of trials included in this review, as well as the clinical and methodological heterogeneity, it was not possible to identify an overall intervention effect using meta-analysis. Some moderate-certainty evidence suggests that psychological interventions (compared with usual care) probably improve adherence to inhaled therapies in people with CF, without increasing treatment-related adverse events, anxiety and depression (low-certainty evidence). In future review updates (with ongoing trial results included), we hope to be able to establish the most effective BCTs (or 'active ingredients') of interventions for improving adherence to inhaled therapies in people with CF. Wherever possible, investigators should make use of the most objective measures of adherence available (e.g. data-logging nebulisers) to accurately determine intervention effects. Outcome reporting needs to be improved to enable combining or separation of measures as appropriate. Likewise, trial reporting needs to include details of intervention content (e.g. BCTs used); duration; intensity; and fidelity. Large trials with a longer follow-up period (e.g. 12 months) are needed in children with CF. Additionally, more research is needed to determine how to support adherence in 'under-served' CF populations.
Objective:
Non-adherence to anti-seizure medications (ASMs) is common for adolescents with epilepsy, with potentially devastating consequences. Existing adherence interventions in epilepsy do not meet the unique challenges faced by adolescents. Leveraging social norms capitalizes on the increased importance of peer influence while simultaneously targeting the low motivation levels of many adolescents. The current study examined the feasibility, acceptability, and satisfaction of a social norms adherence intervention in adolescents with epilepsy.
Methods:
A pilot RCT of a mHealth social norms intervention was conducted with adolescents with epilepsy who demonstrated non-adherence (≤95% adherence) during baseline. Adolescents were randomized to either (1) mHealth social norms (reminders, individualized and social norms adherence feedback) or (2) control (reminders and individualized adherence feedback). Primary outcomes included feasibility, acceptability, and satisfaction. Exploratory outcomes included electronically monitored adherence, seizure severity, and health-related quality of life (HRQOL).
Results:
One hundred four adolescents were recruited (53% female; Mage = 15.4 ± 1.4 years; 81% White: Non-Hispanic; 5% Black, 10% Bi/Multiracial; 2% White: Hispanic; 1% Other: Hispanic; 1% Bi/Multiracial-Hispanic). Forty-five percent screen-failed due to high adherence, 16% withdrew, and 38% were randomized to treatment (n = 19) or control (n = 21). Recruitment (75%), retention (78%), and treatment satisfaction were moderately high. Engagement with the intervention was moderate, with 64% of participants engaging with intervention notifications. Exploratory analyses revealed that after controlling for COVID-19 impact, the social norms intervention group maintained higher adherence over time compared to the control group. Small to moderate effect sizes were noted for seizure severity and HRQOL between groups.
Conclusion:
This pilot intervention appeared feasible and acceptable. Increases in adherence in the treatment versus control group were modest, but a future larger more adequately powered study is needed to detect effects. Notably, it appeared the COVID pandemic influenced adherence behaviors during our trial.
Background
The onset of bipolar disorder (BD) is common during late adolescence and young adulthood (AYA). Suboptimal medication adherence is a critical yet modifiable risk factor for negative outcomes among AYAs with BD.
Methods
This research used an iterative process (e.g., focus groups, advisory board, cognitive interviews) to modify an existing adherence intervention to address suboptimal adherence in AYAs with BD. The modified version of Customized Adherence Enhancement for Adolescents and Young Adults (CAE-AYA) will be compared to an Enhanced Treatment as Usual condition (ETAU) in 40 AYAs intervention using a 6-month prospective, randomized controlled trial (RCT) in a high-risk group of 16–21 year old AYAs with BD with demonstrated non-adherence to their prescribed BD medications.
Conclusions
This report describes the methodology and design of the ImprovinG adhereNce In adolescenTs with bipolar disordEr (IGNITE) study. If successful, the CAE-AYA approach has the potential to advance care for vulnerable youth with BD.
Cystic fibrosis (CF) increases risk for mental health symptoms. This study evaluated patient and caregiver screening for anxiety and depression symptoms as related to pulmonary function (PF) and health-care utilization (HCU). Participants included adolescents, young adults (AYAs; N = 119) and their caregivers (N = 104). AYA depression symptoms correlated with number of hospitalizations (NOH; r = 0.194, p = .035) and length of stay (LOS; r = 0.198, p = .031). AYA LOS correlated with caregiver depression (r = 0.230, p = .019) and anxiety (r = 0.339, p < .001) symptoms. Caregiver anxiety symptoms (sr2 = 0.044), depression symptoms (sr2 = 0.039), and AYA PF (sr2 = 0.193) predicted HCU. Psychosocial screening and intervention are recommended for standard care.
Cystic fibrosis (CF) is an inherited, life-limiting chronic health condition that impacts many organ systems including the lungs, pancreas, liver, intestines, and reproductive organs. Given the various organ systems impacted, treatments can be complex, burdensome, and time consuming. In addition, the stress and emotional impact of CF on caregivers as well as patients is significant. This paper describes delivery of psychosocial care across developmental stages in the largest pediatric CF center in the country. The focus will be on goals of care as well as assessment and intervention strategies. Furthermore, clinical informatics and next steps also will be discussed.
Objective
We evaluated the measurement properties for item and domain scores of the Infant with Clefts Observation Outcomes Instrument (iCOO).
Design
Cross-sectional (before lip surgery) and longitudinal study (preoperative baseline and 2 days and 2 months after lip surgery).
Setting
Three academic craniofacial centers and national online advertisements.
Participants
Primary caregivers with an infant with cleft lip with or without cleft palate (CL ± P) scheduled to undergo primary lip repair. There were 133 primary caregivers at baseline, 115 at 2 days postsurgery, and 112 at 2 months postsurgery.
Main Outcome Measure(s)
Caregiver observation items ( n = 61) and global impression of health and function items ( n = 8) across eight health domains.
Results
Mean age at surgery was 6.0 months (range 2.7-11.8 months). Five of eight iCOO domains have scale scores, with Cronbach’s alphas ranging from 0.67 to 0.87. Except for the Facial Skin and Mouth domain, iCOO scales had acceptable intraclass correlation coefficients (ICCs) ranging from 0.76 to 0.84. The internal consistency of the Global Impression items across all domains was 0.90 and had acceptable ICCs (range 0.76-0.91). Sixteen out of 20 (nonscale) items had acceptable ICCs (range 0.66-0.96). As anticipated, iCOO scores 2 days postoperatively were generally lower than baseline and scores 2 months postsurgery were consistent with baseline or higher. The iCOO took approximately 10 min to complete.
Conclusions
The iCOO meets measurement standards and may be used for assessing the impact of cleft-related treatments in clinical research and care. More research is needed on its use in various treatment contexts.
Adherence to chronic pulmonary drugs in cystic fibrosis (CF) is suboptimal. We studied the feasibility and effectiveness of a multistep medication adherence-enhancing simulation intervention for pediatric CF, which was embedded in motivational interviewing and education. Product simulation experiments were performed by the children themselves, and they addressed adherence to mucolytics/hydrators and antibiotics. Dornase alfa-treated patients aged 7-13 years were included. We invited each patient and their parents to attend an interview. PowerPoint slides were presented and discussed. The final slide invited the patient to perform the simulation experiments, and, in so doing, they experienced what happens when they either do or do not take their medication. An educational film was applied as a summary tool. A patient-centered empathic counseling style was used. Two months later, the child and their parents each completed a different anonymous questionnaire. Overall, 21 patients were included. Parents rated the means of communication and improvement in their child's motivation as very satisfactory. Children highly appreciated the experiments they performed. They often answered two questions on dornase alfa correctly and associated knowledge with adherence. Our results suggest that experiential simulation-based learning is extremely appropriate, and that this multistep intervention is feasible and effective in pediatric CF.
Background
Treatment regimens for cystic fibrosis (CF) continue to evolve and grow in complexity. Treatment regimen burden, and associated sequelae, are incompletely understood.
Objective
QI methods were used to investigate treatment burden of CF care, family and care team partnerships, and potential interventions to reduce burden.
Methods
Patients 6‐24 years with CF and caregivers of patients 6‐13 years were surveyed. Portions of validated tools and existing surveys measured burden and family‐care team partnership. An automated report calculated treatment complexity. PDSA cycles tested survey administration during CF visits and run charts tracked progress. Interventions to reduce burden were tracked, and bidirectional assessments explored partnerships among patients, families and clinicians.
Results
Over 6 months, 110 patients and 62 caregivers completed assessments. Caregivers reported lower burden/higher quality of life (74.0, range 22.2‐100) than patients (66.5, range 16.7‐100). The mean treatment complexity score was 17.2 (range 6‐34). Treatment complexity and burden increased with patient age (p<0.05 and p<0.01 respectively). Lower lung function correlated with higher patient‐reported burden (p<0.01) and higher treatment complexity (p<0.0001). As burden increased, providers more often performed select interventions (discussed combining treatments, simplified regimens, or involved other team members (p<0.05 for each)). Families reported high partnership (mean scores 4.7‐4.8, 5=high), and providers reported high utilization of partnership tools (tool used in 77% of encounters).
Conclusion
We assessed, quantified, and responded to treatment burden and complexity in real‐time during outpatient CF visits. Systematic and individualized assessments of treatment complexity and burden may enhance treatment adherence while preserving quality of life.
This article is protected by copyright. All rights reserved.
Background
Children with excess weight and asthma tend to respond less well to inhaled corticosteroids (ICS) than children with normal weight, potentially resulting in nonadherence to ICS.
Objectives
To assess whether excess weight (body mass index ≥85th percentile) was associated with general, unintentional, and intentional nonadherence to ICS in children with asthma.
Methods
We analyzed data from 566 children aged 4–13 years with asthma, who used ICS as maintenance therapy, from the cross‐sectional Pharmacogenetics of Asthma medication in Children: Medication with Anti‐inflammatory effects study. General nonadherence was measured objectively with the proportion of days covered (<50%) and subjectively with the parent‐reported Medication Adherence Rating Scale (MARS <21) reflecting parent‐reported nonadherent behavior. Unintentional and intentional nonadherence were defined as forgetting to take medication and deliberately changing or skipping doses, respectively, from specific items of the MARS. We performed logistic regression analyses, stratifying estimates by asthma severity and age group.
Results
Excess weight was associated with a trend towards increased odds of parent‐reported nonadherent behavior (odds ratio [OR]: 1.54; 95% confidence interval [CI]: 0.84–2.81) and objectively measured general nonadherence, but only in moderate‐to‐severe asthma (OR: 1.71; 95% CI: 0.84–3.48). The odds of intentional, but not unintentional, nonadherence seemed to be greater in children with excess weight than normal weight (OR: 1.94; 95% CI: 0.94–4.01), and the association appeared to be stronger in younger (OR: 2.17; 95% CI 1.00–4.73) versus older children (OR: 1.18; 95% CI: 0.36–3.94).
Conclusions
Excess weight was associated with general nonadherence to ICS, but only in children with moderate‐to‐severe asthma, and nonadherent behavior, which seemed to be intentional.
Background:
Cystic Fibrosis (CF) is a genetic disease requiring patients to take multiple medications per day. Multiple barriers exist affecting access and adherence. Studies have demonstrated the positive outcomes of pharmacist involvement in CF care. The purpose of this study is to characterize the impact of pharmacy technicians on medication access in the care of CF patients.
Methods:
A retrospective review and analysis of patient medication profiles for patients followed by the integrated pharmacy care process model was performed. Two electronic prescription pathways with pharmacy technician involvement were analyzed. One pathway using a specialty pharmacy CF pharmacy technician (SP technician) examined CF specialty medication delivery times. The other pathway examined the impact of the clinic-based CF pharmacy technician (CB technician) on the number of filling pharmacies for patients.
Results:
One-hundred and fifty-three patients met inclusion criteria in the CF specialty medication delivery analysis, and 56 patients met inclusion criteria filling pharmacy analysis. The median delivery time for dornase alfa decreased from 8 days to 3 days, p<0.00001. The number of patients utilizing 1 filling pharmacy increased from 8 (14%) to 21 (38%), (p=0.005); and utilizing 3 filling pharmacies decreased from 14 (25%) to 1 (2%), (p=0.003).
Conclusion:
The study demonstrated that pharmacy technicians as part of an integrated health-system pharmacy care process model improve medication access in the care of CF patients. This article is protected by copyright. All rights reserved.
Objective:
The purpose of this study was to develop a scale to measure patient adherence to physical therapist intervention and to report psychometric properties in patients with cystic fibrosis (CF).
Methods:
This observational, multicenter, qualitative, and cross-sectional study was divided into 2 phases: development of scale items (content validity) and assessment of psychometric properties (construct validity, reliability, and convergent/discriminant validity). Recruited were 121 patients with CF (aged ≥16 y). Sociodemographic characteristics, lung function testing, Coping with Stress Self-Efficacy (EAEAE), brief Coping Orientation to Problems Experienced inventory (COPE-28), and the AdT-Physio scale were evaluated.
Results:
The final version of the AdT-Physio scale consists of 15 items distributed across 2 subscales: compliance and beliefs about treatment/therapist. The scale showed high internal consistency (Cronbach α = 0.897; 95% CI = 0.868-0.922) and subscales above 0.800. The 2-factor confirmatory factor analysis model fitted the data reasonably well: χ2 (76) = 111.96, comparative fit index = 0.982, Tucker-Lewis index = 0.978, root mean square error of approximation = 0.063, 95% CI = 0.036 to 0.086, weighted root mean square residual = 0.720. No floor or ceiling effects were identified. There was a positive, significant, and moderate-low magnitude correlation with the total COPE-28 (r = .360) and EAEAE subscale efficacy expectations scores (r = .304). For discriminant validity, there was a positive, significant, and moderate correlation between the total and the age of the patients (r = .354).
Conclusion:
The AdT-Physio scale is psychometrically valid and reliable for use in the clinic for the assessment of adherence to physiotherapy in patients with CF.
Impact:
Ultimately, the authors propose this documentary instrument to assess the evaluation of the therapeutic alliance in a valid and objective manner. The AdT-Physio scale provides us with a greater degree of understanding of the problems behind noncompliance with treatment to advance person-centered decisions in physical therapy and thereby enhance the effectiveness of care.
In developed countries, it is projected that there will be a 70% increase in the number of adults living with Cystic Fibrosis (CF) between 2010 and 2025. This shift in demographics highlights the importance of high-quality transition programmes with developmentally appropriate integrated health care services as the individual moves through adolescence to adulthood.
Adolescents living with CF face additional and unique challenges that may have long-term impacts on their health, quality of life and life-expectancy. CF specific issues around socially challenging symptoms, body image, reproductive health and treatment burden differentiate people with CF from their peers and require clinicians to identify and address these issues during the transition process.
This review provides an overview of the health, developmental and psychosocial challenges faced by individuals with CF, their guardians and health care teams considering the fundamental components and tools that are required to build a transition programme that can be tailored to suit individual CF clinics.
Children with acute recurrent and chronic pancreatitis experience severe abdominal pain that may be intermittent or chronic. Pain is often debilitating, causing interference with academic, social, family, and extracurricular activities that are important to youth. Disruption of these routines and the unpredictability of pain flares place children with pancreatitis at increased risk for development of anxious or depressive symptoms. Pediatric psychologists trained in cognitive-behavioral treatment are well suited to intervene on functional disability and mood disturbance, as well as teach coping skills. In an era where there is movement away from opioids, nonpharmacological strategies have an important place for pain management. In fact, positive outcomes following for children with other recurrent abdominal pain syndromes have been reported for this evidence-based intervention. In addition to pain management, pediatric psychologists can address other co-occurring behavioral and emotional problems in children with pancreatitis, such as needle phobia and poor adherence to the prescribed medical regimen.
Significant advancements in the treatment of cystic fibrosis (CF) have led to drastically improved medical outcomes for those living with this illness. While these improvements have increased life expectancy and resulted in better quality of life, managing the daily care required to stay healthy is burdensome and complex. A time-intensive daily CF treatment regimen may be difficult to maintain and can interfere with many aspects of one’s life. Many factors impact how well an individual adheres to recommendations of their healthcare team. Understanding the barriers and facilitators of treatment adherence in CF is critical as well as the interventions available to help those with this disease live better lives while managing their health.
To maximize health, individuals with cystic fibrosis (CF) follow a complex, burdensome daily care regimen. Managing CF is associated with a range of significant biopsychosocial challenges and places individuals with CF, and their caregivers, at greater risk for developing anxiety and depression. To promote wellness and address the potential barriers that affect management of this complex chronic illness, many individuals would benefit from treatment from a behavioral health provider. Social workers within multidisciplinary CF care teams are well positioned to respond to this need, and an expanding number of social workers serving as behavioral health providers in the community will be sought as a resource to provide treatment to this population. This article serves as a primer for social workers to maximize knowledge of the psychosocial and potential behavioral health needs of individuals with CF across the life span. To best support individuals with CF, authors describe the disease-specific manifestations and outline the numerous potential clinical targets for social work to promote wellness. The article concludes by highlighting the importance of communication with the medical team and considerations for effective collaborative care.
Cystic fibrosis (CF) is a chronic life-shortening disease requiring significant coping. Spiritual belief relates to treatment behaviors. Little is known about spirituality’s role in adults diagnosed as children, nor how it compares with adults diagnosed as adults. Adults over 18 years, diagnosed as children completed a questionnaire; some were randomized to also participate in an interview or daily phone diary to measure adherence. Qualitative analyses of 25 adults are presented. Participants reframed their disease as part of a Divine Plan, in which Divine assistance was conditional upon adherence. Linear regression models of spiritual constructs on airway clearance, nebulized medication, and exercise are presented. Adults diagnosed as children related spirituality to CF in ways both consistent and different from adults diagnosed as adults. Spiritual beliefs were related to adherence determinants and intentions. Increased understanding of the relationship between spirituality and health behaviors is important to providing person-centered care.
The purpose of this study was to illustrate how the daily phone diary (DPD) can be used to measure adherence behaviors in 2 pediatric pulmonary populations, cystic fibrosis (CF; n ??31) and asthma (n ??30). Computerized phone interview data was used to conduct activity pattern analyses, which revealed that parents of children with CF spent significantly more time in medical care and less time in recreation. Reasonable agreement was found for adherence rates between the DPD and electronic monitors. The DPD was also able to identify barriers to adherence, which included oppositional behaviors, forgetting, and competing activities. Overall, these data suggested that the DPD holds promise for measuring adherence behaviors within the family context.
Describes the goals and methodology of a randomized, controlled trial comparing the effects of standard medical care to two structured interventions: Family Learning Program and Behavioral Family Systems Therapy. The effects of these conditions are compared using four major outcomes: (1) adherence behaviors (enzyme use, inhaled medications, and airway clearance); (2) family conflict, communication, and coping skills; (3) long-term health outcomes (health status, morbidity, and health-related quality of life); and (4) cost-effectiveness (cost of interventions in relation to cost savings for medical care). This study hopes to evaluate the mechanisms that may mediate the effectiveness of the two family interventions, such as therapeutic alliance, increased knowledge, and treatment satisfaction; and to examine maintenance of treatment effects over an 18-mo period. Difficult methodological and clinical issues in the implementation of this study are discussed along with future directions. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Adherence to medical treatment is a significant problem for children and adolescents with chronic conditions, such as asthma, diabetes, and cystic fibrosis. The consequences of nonadherence can be serious, contributing to increased symptoms, unnecessary hospitalizations, and declines in physical functioning. The quality of data obtained from clinical trials can also be affected by poor adherence, leading to erroneous conclusions concerning the efficacy of drug treatments and the dosages that are needed to achieve those effects. Adherence problems in both clinical research and practice also lead to substantially higher health care costs. In order to further our understanding of the barriers that lead to poor adherence and identify strategies that are effective in addressing them, we need to develop reliable and valid measures of adherence behaviors. Using cystic fibrosis as a model of a serious, chronic disease that requires a difficult and time-consuming medical regimen, three different types of adherence measures are considered: self-report questionnaires, daily diary reports, and electronic monitors. The specific advantages and disadvantages of each type of measurement are reviewed, and specific recommendations are made for future research.
A contextual framework guided the measurement of specific stressors encountered by parents of children recently diagnosed
with cystic fibrosis (CF). Three variables were assessed within the context of the parenting role: illness-specific tasks,
normal parenting tasks, and strains in family roles. These situation-specific stressors were contrasted with global measures
of parenting stress in their ability to predict depression. Sixty-four parents (36 mothers, 28 fathers) of infants and toddlers
recently diagnosed with CF completed a structured interview and standardized measures in the home. Parents reported elevations
in both situation-specific and global parenting stress, and a greater number of depressive symptoms than a norm group. Mothers
reported significantly greater strain in managing their caregiving role and higher levels of depression than fathers. Controlling
for situation-specific parenting stress and marital satisfaction, regression analyses indicated that role strain related to
CF was associated with greater depression in mothers, but not fathers. Furthermore, stressors measured contextually rather
than globally accounted for substantially greater proportions of the variance in depression. The findings highlight the need
to measure ongoing strains specific to the medical condition, and to assess rolerelated changes.
Using an electronic inhaler timer device (Nebulizer Chronolog), compliance with the prescribed frequency of inhaled prophylactic medication in 14 asthmatic children was measured. Underuse occurred in 55% of study days while overuse occurred in only 2%. Such devices provide an important new tool for investigating inhaled drug compliance.
Morbidity from asthma among children is one of the most important US health concerns. This study examines the relationship of baseline nonadherence to subsequent asthma morbidity among inner-city children.
A multisite, prospective, longitudinal panel study was conducted of 1199 children who were aged 4 to 9 years and had asthma and their caregivers, most of whom were parents, in emergency departments and clinics at 8 research centers in 7 US metropolitan inner-city areas. Nine morbidity indicators were collected at 3, 6, and 9 months after baseline, including hospitalizations, unscheduled visits, days of wheeze/cough, and days of reduced activities.
Children whose caregivers scored high on a new measure, Admitted Nonadherence, experienced significantly worse morbidity on 8 of the 9 measures. Children who scored high on a new Risk for Nonadherence measure experienced significantly worse morbidity on all 9 morbidity measures. Multiple and logistic regressions found that the adherence measures had independent significant effects on morbidity. Combining the measures improved estimates of morbidity: children whose caregivers were poor on either adherence measure had worse morbidity than those with good adherence on both, eg, rate of hospitalization was twice as high, they missed more than twice as much school, had poorer overall functioning, and experienced more days of wheezing and more restricted days of activity.
Risk for Nonadherence and Admitted Nonadherence independently and jointly predicted subsequent asthma morbidity. Targeting risks for nonadherence may be an effective intervention strategy. Most risks can be controlled by physicians through reducing the complexity of asthma regimens, communicating effectively with caregivers about medication use, and correcting family misconceptions about asthma medication side effects.
Pulmonary disease in cystic fibrosis (CF) is characterised by thick tenacious secretions that obstruct the airways and cause lung damage. Recombinant human DNase I (rhDNase), nebulised once a day, reduces the viscoelasticity of sputum and improves lung function in CF patients. However, it is an expensive treatment with uncertain long-term benefits. There have been no studies of alternate day rhDNase, which if equally effective would halve the drug cost and treatment time. Recently, nebulised hypertonic saline (HS) has been demonstrated to enhance mucociliary clearance and lung function in short-term studies in CF. It represents a potential low cost alternative therapy to rhDNase. The aim of the study was to compare the effectiveness of daily rhDNase with HS and alternate day rhDNase in children with CF. 48 CF patients (19 males) with a mean age of 12.6 (range 7.3 to 17.0) years were recruited to an open-label randomised cross-over trial. Each patient was allocated consecutively to 12 weeks of once-daily 2.5mg rhDNase, alternate day 2.5mg rhDNase or twice-dairy 5mls of 7% HS in random order. There was a 2 week washout period between treatments. Following 12 weeks of treatment, there was a mean increase in FEV1 over baseline of 16% (SD 25%), 14% (SD 22%) and 3% (SD 21%) for daily rhDNase, alternate day rhDNase and HS, respectively. Comparing daily rhDNase with alternate day rhDNase there was no significant difference between die treatments (95% CI: -4% to +9%, p=0.55). However, daily rhDNase showed a significantly greater increase in FEV1 compared with HS (95% CI: 2% to 14%, p=0.02). The increase in FVC over baseline was 12% (SD 21%), 11% (SD 16%) and 4% (SD 22%) for daily rhDNase, alternate day rhDNase and HS, respectively. This was non-significant between the treatments. There was also no significant difference in the number of pulmonary exacerbations, change in exercise tolerance, weight or subjective well-being between the treatments. We conclude that alternate day rhDNase appears as effective as daily rhDNase in CF, with the potential for considerable cost savings. Seven percent HS does not appear as effective as daily rhDNase, although there was some variation in individual response.
The purpose of this study was to systematically identify barriers to treatment adherence for children with cystic fibrosis (CF) and asthma, as well as to examine the relationship between the number of barriers and adherence.
Participants included 73 children with CF or asthma and their parents. The mean age of the sample was 9.9 years, and 58% were males.
Results indicated that barriers were quite similar by illness and informant (e.g., parent and child) for the same treatments, but unique barriers were identified for disease-specific treatments. Frequently mentioned barriers across diseases included forgetting, oppositional behaviors, and difficulties with time management. Trends were identified between adherence and barriers, suggesting that a greater number of barriers were related to poorer adherence.
Overall, this study provided evidence that patients and their parents experience specific barriers within the context of their own illness and highlights the need for disease-specific measures and interventions.
Adherence-improvement strategies can be broadly classified as educational, organizational, and behavioral (Dunbar, Marshall, & Hovell, 1979). Educational strategies primarily rely on verbal, written, computer-based, or Web-based information designed to enlighten patients and their families
about diseases, treatment regimens, potential negative side effects of treatment, and the importance of consistent adherence.
Organizational strategies target ways in which health care is delivered, including increasing access to health-care services, simplifying regimens,
and increasing provider supervision of regimens. Behavioral strategies refer to behavior-change techniques to alter specific adherence behaviors such as patient and parental monitoring of regimens,
problem-solving, contracting, and token reinforcement programs.
We assessed parental differential treatment of siblings (maternal time, affection, discipline) in normal and high-risk families. Differential treatment was measured using home interviews, nightly phone ratings, and daily diaries tracking how mothers spent their time. Subjects were 40 mothers of toddlers (average age 2 years) and preschoolers (average age 4 1/2 years): half were caring for a younger child with a chronic illness (i.e., cystic fibrosis), and half were caring for two healthy children. Little evidence of parental differential treatment was found in the home or phone interview data. However, on the diary variables, both quantitative and qualitative differences in parental treatment were found in cystic fibrosis (CF) versus comparison families. Specifically, mothers spent more individual time with younger, chronically ill children in play and mealtime activities than with their older, healthy siblings. Further, mothers in the CF group rated time spent with older children as significantly more negative than time spent with younger children. Convergence between measures of differential treatment and advantages of using a high-risk comparison approach are discussed.
From a randomly selected population representative of the white population of Tucson, Ariz., satisfactory flow-volume data were obtained for 3,115 persons. Data from the 746 subjects who were totally free of symptoms or history of cardiorespiratory disease and who had never smoked were used in determining "normal" prediction equations for spirometric parameters and maximal expiratory flows. The maximal expiratory flow-volume curve showed considerable intersubject variability, but little change in shape of the mean maximal expiratory flow-volume curve was seen with advancing age when the effects of disease, insult, or injury were excluded.
Asthma is a common chronic illness. Recently, increases in morbidity and mortality due to this disease have been reported. We studied the distribution of health care resources used for asthma in order to lay the groundwork for further policy decisions aimed at reducing the economic burden of this disorder.
Estimates of direct medical expenditures and indirect costs (in 1985 dollars) were derived from data available from the National Center for Health Statistics. These cost estimates were projected to 1990 dollars.
The cost of illness related to asthma in 1990 was estimated to be $6.2 billion. Inpatient hospital services represented the largest single direct medical expenditure for this chronic condition, approaching $1.6 billion. The value of reduced productivity due to loss of school days represented the largest single indirect cost, approaching $1 billion in 1990. Although asthma is often considered to be a mild chronic illness treatable with ambulatory care, we found that 43 percent of its economic impact was associated with emergency room use, hospitalization, and death. Nearly two thirds of the visits for ambulatory care were to physicians in three primary care specialties--pediatrics, family medicine or general practice, and internal medicine.
Potential reductions in the costs related to asthma in the United States may be identified through a closer examination of the effectiveness of care associated with each category of cost. Future health policy efforts to improve the effectiveness of primary care interventions for asthma in the ambulatory setting may reduce the costs of this common illness.
This research examined the accuracy of data obtained by a self-observation and report technique (SORT) developed to record patients' ongoing everyday behaviors, where the behaviors occur, whether aid is provided, and if so, by whom. Over 2 consecutive weeks 10 persons with recent spinal cord injuries hospitalized at a major rehabilitation center reported their behaviors during 8 half-day periods. Assessments of reporting accuracy compared self-reports with data recorded by independent observers. Minute-by-minute comparisons of self-report and independent observations indicated moderate levels of agreement. Weekly measures of performance derived from the 2 kinds of records showed high agreement. Reporting accuracy was relatively unaffected by the amount of time between the occurrence of a behavior and its report and the personal importance of various behaviors to the patients. The SORT provides a dependable, flexible and cost-efficient means for assessing what patients do on a day-to-day basis and it offers many options for monitoring patients' functional performance in rehabilitation.
Parents and patients in the Rhode Island Cystic Fibrosis Center were interviewed to determine the extent of compliance with various aspects of the therapeutic regimen. Current patterns of compliance were compared with retrospective clinic records of reported compliance up to 8 years prior to the time of study. Actual clinic attendance and reported compliance with medications were high. Patients reported significantly lower compliance with diet and chest physiotherapy. Most patients reported less compliance with chest physiotherapy at the time of study than 3 to 8 years earlier, regardless of the severity of their lung disease. Patients frequently reported self-medication with non-prescribed vitamins, antibiotics, or other drugs. Patients' perceptions of the severity of their disease and the possible adverse consequences of discontinuing therapy probably contribute to both good medication compliance and self-medication.
Poor adherence to medication regimens is a well-documented phenomenon in clinical practice and an ever-present concern in clinical trials. Little is known about adherence to inhaled medication regimens over extended periods. The present paper describes the 2-yr results of the Lung Health Study (LHS) program, which was developed to maintain long-term adherence to an inhaled medication regimen in 3,923 special intervention participants (as measured by self-report and medication canister weight). The LHS is a double-blind, multicenter, randomized controlled clinical trial of smoking intervention and bronchodilator therapy (ipratropium bromide or placebo) for early intervention in chronic obstructive pulmonary disease (COPD). At the first 4-mo follow-up visit, nearly 70% of participants reported satisfactory or better adherence. Over the next 18 mo, self-reported satisfactory or better adherence declined to about 60%. Canister weight classified adherence as satisfactory or better in 72% of participants returning all canisters at 1 yr, and in 70% of the participants returning all canisters at the 2-yr follow-up. Self-reporting confirmed by canister weight classified 48% of participants at 1 yr as showing satisfactory or better adherence. Overusers were 50% more likely than others to misrepresent their true smoking status, suggesting that canister weights indicating overuse may be deceptive. Results of multiple logistic regression analysis indicate that the best compliance was found in participants who were married, older, white, had more severe airways obstruction, less shortness of breath, and fewer hospitalizations, and who had not been confined to bed for respiratory illnesses.(ABSTRACT TRUNCATED AT 250 WORDS)
To investigate calorie intake, behavioral eating styles, and parent perception of eating behavior of preschool children with cystic fibrosis (CF) compared with healthy peers.
A two group comparison study.
A clinical sample of 32 preschool children with CF (aged 2 to 5 years) and a community sample of 29 healthy peers matched for age and socioeconomic status.
The two groups did not differ on the total number of calories consumed per day or the percentage of calories derived form fat. The CF sample achieved a significantly higher percent of the recommended daily allowance (RDA) of energy (95% RDA) than the control group (84% RDA), P < .05, but did not achieve the CF dietary recommendations of 120% RDA. On measures of behavioral eating style, the CF sample had significantly longer meals (24.63 min) than the control group (18.57 min), P < .01, but did not differ on pace of eating or calories consumed per bite. On a measure of parent report of mealtime behavior, parents of the CF sample identified mealtime behaviors of "dawdles" and "refuses food" as more problematic (M = .93) than parents of control children (M = .22), P < .05.
While preschool children with CF consume as much or more than healthy peers, they are not achieving the CF dietary recommendations. Furthermore, there appear to be behavioral differences in eating and parent perception of CF children's eating that may contribute to the failure to achieve dietary recommendations.
We assessed parental differential treatment of siblings (maternal time, affection, discipline) in normal and high-risk families. Differential treatment was measured using home interviews, nightly phone ratings, and daily diaries tracking how mothers spent their time. Subjects were 40 mothers of toddlers (average age 2 years) and preschoolers (average age 4 1/2 years): half were caring for a younger child with a chronic illness (i.e., cystic fibrosis), and half were caring for two healthy children. Little evidence of parental differential treatment was found in the home or phone interview data. However, on the diary variables, both quantitative and qualitative differences in parental treatment were found in cystic fibrosis (CF) versus comparison families. Specifically, mothers spent more individual time with younger, chronically ill children in play and mealtime activities than with their older, healthy siblings. Further, mothers in the CF group rated time spent with older children as significantly more negative than time spent with younger children. Convergence between measures of differential treatment and advantages of using a high-risk comparison approach are discussed.
The past 6 years has been an exceptionally exciting time in the history of cystic fibrosis (CF). In this relatively short period, the genetic abnormality has been discovered, the basic defect(s) further defined, our understanding of the respiratory manifestations enhanced, the importance of aggressive nutritional support emphasized, and scientific advances rapidly converted into therapeutic strategies.
Accurate and reliable information about children's use of inhaled medications is needed because of the growing reliance on these drugs in the treatment of asthma and the excessive morbidity and mortality attributable to this disease.
This study was designed to evaluate the adherence of children with asthma to regimens of inhaled corticosteroids and beta-agonists.
Data collected electronically by metered-dose inhaler monitors were compared with data recorded by patients on traditional diary cards. A volunteer sample of 24 children, between 8 and 12 years old, who had asthma for which they were receiving both inhaled corticosteroids and beta-agonists, participated over a 13-week period. Each child was accompanied by a parent to all study visits. The main outcome measures were the use of medication as reported by diary card entries and recorded by electronic monitoring and disease exacerbation, as indicated by requirement for oral corticosteroids.
The median use of inhaled corticosteroids reported by patients on their diaries was 95.4%, whereas the median actual use was 58.4%. More than 90% of patients exaggerated their use of inhaled steroids, and diary entries of even the least compliant subjects reflected a high level of adherence. The children who experienced exacerbation of disease sufficient to require a burst of oral corticosteroids differed markedly from the others in their adherence to prescribed therapy as recorded by the electronic monitors. The median compliance with inhaled corticosteroids was 13.7% for those who experienced exacerbations and 68.2% for those who did not.
Electronic monitoring demonstrated much lower adherence to prescribed therapy than was reported by patients on diary cards. Low rates of compliance with prescribed inhaled corticosteroids were associated with exacerbation of disease. Poor control of asthma should alert the physician to the possibility of noncompliance.
The compliance of 91 diabetic patients using oral antidiabetics was studied. Patient compliance was measured using four different methods. Patients received their medication in a Medication Event Monitoring System (MEMS)-container. Each time the patient went back to the pharmacy for refill prescriptions, the number of tablets left in the container were counted. Pharmacy records were used to study the number of days of delay in getting the next refill. At the end of the study, a questionnaire was sent to every patient. Using MEMS as a standard, the results show that pill count and refill data overestimate the compliance of this group of patients. The MEMS data also show that the compliance data using only the number of tablets may be biased, because of possible overconsumption. Pill count does not show a correlation with compliance as measured by MEMS. The relation between compliance as measured with MEMS and refill compliance is weak.
This study aimed to elucidate the relationship between maternal psychosocial factors related to dietary adherence and growth outcomes in their children with cystic fibrosis (CF). Twenty-five children with CF and mild lung disease, aged 7-12 years, were weighed and measured and completed detailed food records. Mothers completed questionnaires that measured general nutritional knowledge, nutritional knowledge specific to CF, coping strategies, dieting behaviors, self-efficacy about the ability to provide the correct diet, and attitudes and beliefs about CF. Of the cohort, only 16% adhered to the dietary recommendations. Dietary adherence was positively correlated with weight. Maternal nutritional knowledge specific to CF significantly predicted children's dietary adherence score. There was a significant negative correlation between the child's weight and mothers who were dieting successfully. Other psychosocial factors assessed were not related to dietary adherence. Improving the mother's knowledge about nutritional needs in CF appears worthwhile and may have an impact on growth.
To determine whether a prescription refill history obtained by telephoning patients' pharmacies identifies poor adherence with asthma medications more frequently than physician assessment.
The study population consisted of 116 children with persistent asthma who were Medicaid recipients; patients who received medication samples were excluded. During a clinic visit pulmonologists interviewed patients, caretakers, or both and estimated adherence on a checklist. A nurse asked the caretakers where they obtained medications and telephoned 66 identified pharmacies for refill histories. The maximum possible adherence was calculated as the number of doses refilled/number of doses prescribed x 100 for a mean duration of 163 days (range, 63 to 365 days). The accuracy of the refill information was determined from Medicaid reimbursement records.
Information provided by pharmacies was 92% accurate. The mean (95% CI) of maximum potential adherence was 72% (65%,77%) for theophylline, 61% (55%,68%) for inhaled corticosteroids, and 38% (23%,53%) for cromolyn; only cromolyn and theophylline were significantly different. Physicians were able to identify 21 (49%) of 43 patients who refilled </=50% of prescribed doses of long-term symptom controllers and only 3 (27%) of 11 patients who used albuterol excessively.
Physicians often were unable to identify patients with very poor adherence. Checking prescription refills is an accurate and practical method of identifying such patients.
Accurate assessment of medication adherence has been difficult to achieve but is essential to drug evaluation in clinical trials and improved outcomes in clinical care.
This study was conducted to compare four adherence assessment methods: child report, mother report, canister weight, and electronic measurements of metered dose inhaler (MDI) actuation.
Participants included 27 children with mild-to-moderate asthma who were followed prospectively for 6 months. All patients used an MDI equipped with an electronic Doser attached to their inhaled steroid. At each 2-month follow-up visit, Doser and canister weight data were recorded, while child and mother were interviewed separately regarding medication use.
Children and mothers reported, on average, over 80% adherence with the prescribed inhaled steroid. Canister weight revealed, on average, adherence of 69%, significantly lower than self-report. When adherence recorded by the electronic Doser was truncated to no more than 100% of prescribed daily use, average adherence was 50%. Older children and adolescents, nonwhite children, and those from poorer functioning families were least adherent.
Electronic adherence monitoring was significantly more accurate than self-report or canister weight measures. Such accuracy is an essential prerequisite to increasing understanding of the treatment, setting, and patient factors that influence adherence, and to the consequent design of effective intervention strategies.
To determine the relation of growth and nutritional status to pulmonary function in young children with cystic fibrosis (CF).
The relation of weight-for-age (WFA), height-for-age (HFA), percent ideal body weight (%IBW), and signs of lung disease at age 3 years with pulmonary function at age 6 years was assessed in 931 patients with CF. Associations of changes in WFA from age 3 to 6 on pulmonary function were also assessed.
WFA, HFA, and %IBW were poorly associated with lung disease at age 3 years, but all were strongly associated with pulmonary function at age 6 years. Those with WFA below the 5th percentile at age 3 had lower pulmonary function at age 6 compared with those above the 75th percentile (FEV(1): 86 +/- 20 [SD] versus 102 +/- 18 % predicted, respectively). Pulmonary function was highest in those whose WFA remained >10th percentile from age 3 to 6 (FEV(1): 100 +/- 19 % predicted) and lowest in those who remained <10th percentile (84 +/- 21 % predicted). Patients with signs and symptoms of lung disease at age 3 years had lower pulmonary function at age 6 years.
Aggressive intervention early in life aimed at growth and nutrition and/or lung disease may affect pulmonary function.
Nutritional status is associated with pulmonary health and survival in children with cystic fibrosis (CF). This study evaluated the weight gain pattern of children with CF in relation to the longitudinal trends of their pulmonary function. Our hypothesis was that children who experience continuous weight gain at a given rate will have better average forced expiratory volume in 1 second (FEV(1)) and change in FEV(1) than children who have weight gain patterns that deviate from this rate, even when total weight gain seems adequate.
Prospectively collected data were examined in 319 children, aged 6 to 8, who were routinely followed at the Minnesota Cystic Fibrosis Center. One to 67 measurements of weight (kg), height (cm), and FEV(1) (mL) were taken per child during this 2-year period. The data were analyzed by repeated measure regression analysis and by growth pattern analysis.
At baseline, a 1-kg higher initial weight was associated with a 55-mL higher average FEV(1). During the follow-up period, a 1-kg gain in weight was associated with an increase in FEV(1) by 32 mL. Children who had a steady weight gain tended to experience greater increases in FEV(1) than children who experienced periodic losses in weight.
We established that children who weigh more and who gain weight at an appropriate and uninterrupted rate have a better FEV(1) trajectory. Aggressive nutritional support to maintain growth in these children may therefore improve FEV(1), which can be taken as a surrogate for better lung health, and may ultimately lead to better survival.
The purpose of this study was to determine the extent to which patients omit doses of medications prescribed for diabetes.
A literature search (1966-2003) was performed to identify reports with quantitative data on adherence with oral hypoglycemic agents (OHAs) and insulin and correlations between adherence rates and glycemic control. Adequate documentation of adherence was found in 15 retrospective studies of OHA prescription refill rates, 5 prospective electronic monitoring OHA studies, and 3 retrospective insulin studies.
Retrospective analyses showed that adherence to OHA therapy ranged from 36 to 93% in patients remaining on treatment for 6-24 months. Prospective electronic monitoring studies documented that patients took 67-85% of OHA doses as prescribed. Electronic monitoring identified poor compliers for interventions that improved adherence (61-79%; P < 0.05). Young patients filled prescriptions for one-third of prescribed insulin doses. Insulin adherence among patients with type 2 diabetes was 62-64%.
This review confirms that many patients for whom diabetes medication was prescribed were poor compliers with treatment, including both OHAs and insulin. However, electronic monitoring systems were useful in improving adherence for individual patients. Similar electronic monitoring systems for insulin administration could help healthcare providers determine patients needing additional support.
Dornase alpha improves sputum clearance and pulmonary function in patients with moderate bronchiectasis and cystic fibrosis (CF). Several studies have demonstrated variable adherence to treatment regimens in patients with CF. We aimed to compare self-reported adherence with computer based dispensing records of dornase alpha.
Direct interview of adherence to dornase alpha was compared with pharmacy-dispensing records during a 12-month period. The reasons for dornase alpha usage, and change in lung function in three groups of patients were compared (group 1 (n=42): positive trial, continuing therapy; group 2 (n=13): positive trial, ceased therapy; group 3 (n=22): negative trial). Ninety patients with CF were surveyed. Patients who had ceased dornase alpha provided reasons for drug cessation. Lung function and anthropometric data were collected prior to dornase alpha treatment and at 3 years. Health care professionals rated adherence to therapy.
Of the 42 patients on dornase alpha, the average utilisation was 197 days (54%). From dispensing records, 24% of patients were classified as good adherence, 46% as moderate adherence and 30% as poor adherence. Eighty-two percent claimed to use dornase alpha therapy more than 20 days/month, whereas dispensing records showed that only 24% of collected sufficient drug supplies. Health professionals' assessment of adherence of therapy was often incorrect and an overestimation was more common than underestimation. The change in FEV(1) 3 years after trial was not significantly different between groups. There was a negative correlation between initial response to dornase alpha and baseline FEV(1) (r=-0.44, P=0.001), however, initial response was not related to the change in FEV(1) over 3 years (r=0.20, P=0.16).
There is variability in adherence to dornase alpha in adults with CF and patient self-reporting is likely to over-estimate drug collection from the pharmacy. Further study of the long-term effects of dornase alpha is required. To date, proven interventions to enhance adherence are limited and require investigation in CF.
The purpose of this study was to monitor medication adherence in cystic fibrosis (CF) patients and its correlation with disease severity and patient age.
Children less than 12 years of age (group 1) and adolescents 12 years of age and older (group 2) were recruited from the University of Michigan CF Center. The study duration was 3 months. A total of 22 patients per group were enrolled. Adherence to ADEKs, an oral multivitamin, and dornase alfa, a nebulized mucolytic medication, was monitored. Adherence to ADEKs was monitored by using the Medication Event Monitoring System (MEMS) SmartCaps (APREX, AARDx, Inc., Union City, California). Dornase alfa adherence rate was monitored by counting empty medication vials.
Thirty-three patients completed the study, 15 patients in group 1 and 18 patients in group 2. The overall mean adherence rates for ADEKs and dornase alfa were (+/- SD) 63.6% +/- 24.0% and 66.5% +/- 31.2%, respectively. The median ADEKs and dornase alfa adherence rate for group 1 was 84.6% and 79.1%, respectively (p = .08); and for group 2 was 56.7% vs. 78.4%, respectively (p = .07). There was a trend toward significance, suggesting that the adherence rate for ADEKs was higher than for dornase alfa (p = .08) in group 1. Group 2 showed a trend toward adherence to dornase alfa than to ADEKs (p = .07). There was a trend for ADEKs adherence between groups 1 and 2 (p = .09), but not for dornase alfa (p = .93).
Parental supervision and disease severity are likely to play a major role in adherence to medical management. Partnership with patients and families about the treatment plan might be important for improving adherence rate. The MEMS SmartCaps is an electronic monitoring technology that should be used to measure drug adherence objectively both in further larger clinical trials and in the outpatient setting.
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Adherence to medical treatments in adolescents with cystic fibrosis: the development and evaluation of family-based interven-tions Promoting adherence to medical treatment in childhood chronic illness: interventions and methods
- Al Quittner
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Quittner AL, Drotar D, Ievers-Landis CE, Seidner D, Slocum N, Jacobsen J. Adherence to medical treatments in adolescents with cystic fibrosis: the development and evaluation of family-based interven-tions. In: Drotar D, editor. Promoting adherence to medical treatment in childhood chronic illness: interventions and methods. Hillsdale (NJ)' Erlbaum Associates, Inc.; 2000.
Results of a clinical trial to improve adherence in adolescents with cystic fibrosis: comparisons of family therapy and psychoeducation. Paper presentation at the Conference on Child Health Psychology
- A L Quittner
- D Drotar
- C E Ievers-Landis
Quittner A.L., Drotar D., Ievers-Landis C.E. Results of a clinical trial to improve adherence in adolescents with cystic fibrosis: comparisons of family therapy and psychoeducation. Paper presentation at the Conference on Child Health Psychology; 2004; Charleston, SC; 2004.
Pediatric and adolescent adherence research: a decade in review
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Clinic-based adherence intervention for diabetes and cystic fibrosis
- S B Johnson
- A L Quittner