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| Comprehensiveness of reporting assessment (consolidated criteria for reporting qualitative research checklist) 17
Source publication
To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions.
Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies.
Medline,...
Citations
... The FGDs and ranking exercises were given equal priority when interpreting the results. This type of approach has been successfully employed and reported upon previously in several studies in healthcare context [42][43][44][45]. Using both qualitative and quantitative methods enable the generation and exploration of the rationale to identify important criteria for making decisions about healthcare resource allocation. ...
Introduction
The prevention of unintended pregnancy is a public health issue affecting women worldwide. In Australia, women are required to get a prescription to obtain the oral contraceptive pill (OCP), which may limit access and be a barrier to its initiation and continuing use. Changing the availability of the OCP from prescription-only to over-the-counter (OTC) is one solution, however, to ensure success policymakers need to understand women’s preferences. Telehealth services also might serve as an alternative to obtain prescriptions and increase accessibility to OCPs. This study aims to explore the preferences for OTC OCPs among Australian women, and whether the expansion of telehealth impacted women’s preferences.
Methods
A mixed methods approach was used to explore women’s preferences regarding access to the OCP. Focus group discussions (FGDs) were conducted to organically identify the preferences followed by an empirical ranking exercise. Three FGDs in two phases were conducted, pre and post-expansion of telehealth in Australia due to the COVID-19 pandemic. Convenience sampling was employed. The technique of constant comparison was used for thematic analysis where transcripts were analysed iteratively, and codes were allowed to emerge during the process to give the best chance for the attributes to develop from the data.
Results
Thematic analysis revealed that women perceived OTC availability of OCPs as a mechanism to increase the accessibility of contraception by reducing cost, travel time, waiting time, and increasing opening hours. They also believed that it would increase adherence to OCPs. However, some potential safety concerns and logistical issues were raised, including pharmacist training, access to patient’s medical history, the ability to discuss other health issues or undertake opportunistic health screening, adherence to checklists, and privacy in the pharmacy environment. Following the expansion of telehealth, accessibility issues such as opening hours, travel time, and location of the facility were considered less important.
Conclusions
The participants expressed their support for reclassifying OCPs to OTC, particularly for repeat prescriptions, as it would save valuable resources and time. However, some safety and logistical issues were raised. Women indicated they would balance these concerns with the benefits when deciding to use OTC OCPs. This could be explored using a discrete choice experiment. The expansion of telehealth was perceived to reduce barriers to accessing OCPs. The findings are likely to be informative for policymakers deciding whether to reclassify OCPs to OTC, and the concerns of women that need addressing to ensure the success of any policy change.
... To facilitate the timeliness and comprehensiveness of these assessments, a coordinated multidisciplinary care team approach is required [25 ]. Several proposed interventions have been attempted, including that of navigator roles and transitional units ( TUs) . ...
A proportion of end-stage kidney disease (ESKD) patients require kidney replacement therapy to maintain clinical stability. Home dialysis therapies offer convenience, autonomy and potential quality of life improvements, all of which were heightened during the COVID-19 pandemic. While the superiority of specific modalities remains uncertain, patient choice and informed decision-making remain crucial. Missed opportunities for home therapies arise from systemic, programmatic and patient-level barriers. This paper introduces the integrated care model which prioritizes the safe and effective uptake of home therapies while also emphasizing patient-centered care, informed decision-making, and comprehensive support. The integrated care framework addresses challenges in patient identification, assessment, eligibility determination, education and modality transitions. Special considerations for urgent dialysis starts are discussed, acknowledging the unique barriers faced by this population. Continuous quality improvement is emphasized, with the understanding that local challenges may require tailored solutions. Overall, the integrated care model aims to create a seamless and beneficial transition to home dialysis therapies, promoting flexibility and improved quality of life for ESKD patients globally.
... It is known that patients with graft failure tend to have higher mortality risk after resuming dialysis when compared to the transplant naïve patients (21). Yet, Patients usually have own perceptions of dialysis based on past experience, and tend to overestimate benefit and underestimate harm of intervention (23,24). Hence, patients and their family should be primed about the potential future course with declining graft function. ...
... It has been difficult to engage transplant recipients to palliative care and integrate ACP to the post-transplant care process due to the impression that palliative care contradicts with the goal to receive transplantation (45). Despite a higher mortality risk in graft failure patients after resuming dialysis when compared to the transplant naïve patients, the decision of these graft failure patients may be influenced by his/her own past experience and experience of other patients (21,24). Some studies had demonstrated discrepancy in anticipated life expectancy between the patients and their clinicians. ...
Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life than dialysis. The clinical course after kidney transplantation could be complex and variable. Patients may develop various complications or even kidney graft failure. Symptom burden related to uraemia in patients with graft failure, and the side-effects of immunosuppression, cause psychological distress and adversely affect the quality of life of patients. Treatment decisions in patients with graft failure can be challenging to patients and their caregivers. Renal palliative care is an emerging field, but its adoption remains relatively low among kidney transplant recipients with progressive graft failure. In this context, timely consideration and referral for palliative care can improve symptom burden, reduce stress in patients and their caregivers, and facilitate treatment goal setting and advanced care planning. Common barriers to bring palliative care to suitable patients include: (I) misconception in patients, caregivers and healthcare providers that palliative care means abandonment of life sustaining treatment; (II) over-optimistic prognostic assessment and over-aggressive management approach; (III) insufficient awareness and training in palliative care of healthcare professionals; (IV) inadequate access to and insufficient resources in palliative care. Enhanced training and awareness, and further studies, would be needed to optimize the decision process and delineate the benefit of palliative care, and to guide evidencebased practice in the transplant population.
... Patients with chronic renal disease were more worried about the influence on QoL than longevity, according to a comprehensive review and synthesis of qualitative studies on their opinions on treatment decision-making [39]. ...
Background
Frailty among older adults undergoing hemodialysis is increasingly prevalent, significantly impacting cognitive function, mobility, and social engagement. This study focuses on the clinical profiles of very older adults in hemodialysis, particularly examining the interplay of dependency and frailty, and their influence on dialysis regimens.
Methods
In this observational, descriptive study, 107 patients aged over 75 from four outpatient centers and one hospital unit were examined over a year. Patient data encompassed sociodemographic factors, dialysis specifics, analytical outcomes, lifestyle elements, and self-reported post-treatment fatigue. Malnutrition-inflammation scale was used to measure the Nutritional status; MIS scale for malnutrition-inflammation, Barthel index for dependency, Charlson comorbidity index; FRIED scale for frailty and the SF12 quality of life measure.
Results
The study unveiled that a substantial number of older adults on hemodialysis faced malnutrition (55%), dependency (21%), frailty (46%), and diminished quality of life (57%). Patients with dependency were distinctively marked by higher comorbidity, severe malnutrition, enhanced frailty, nursing home residency, dependency on ambulance transportation, and significantly limited mobility, with 77% unable to walk. Notably, 56% of participants experienced considerable post-dialysis fatigue, correlating with higher comorbidity, increased dependency, and poorer quality of life. Despite varying clinical conditions, dialysis patterns were consistent across the patient cohort.
Conclusions
The older adult cohort, averaging over four years on hemodialysis, exhibited high rates of comorbidity, frailty, and dependency, necessitating substantial support in transport and living arrangements. A third of these patients lacked residual urine output, yet their dialysis regimen mirrored those with preserved output. The study underscores the imperative for tailored therapeutic strategies to mitigate dependency, preserve residual renal function, and alleviate post-dialysis fatigue, ultimately enhancing the physical quality of life for these patients.
... Furthermore, current research indicates that symptoms are considered more important by KTRs than clinical indicators. 45 As a result, HCPs should promptly and comprehensively assess patients' symptoms, particularly addressing psychological symptoms effectively, to alleviate the overall symptom burden. Analyzing the characteristics of patients with high symptom burden can help identify at-risk groups early, enabling personalized interventions. ...
Purpose
Kidney transplant recipients (KTRs) may experience symptoms that increase their fear of progression (FoP), but a dearth of research examines the issue from a patient-centered perspective. Our study aimed to first determine the category of symptom burden, then to explore the differences in characteristics of patients in different subgroups, and finally to analyze the impact of symptom subgroup on FoP.
Patients and Methods
Sociodemographic and Clinical Characteristics, Symptom Experience Scale, and Fear of Progression Questionnaire-Short Form were used. Latent class analysis was used to group KTRs according to the occurrence of symptoms. We used multivariate logistic regression to analyze the predictors of different subgroups. The differences in FoP among symptom burden subgroups were analyzed by hierarchical multiple regression.
Results
Three subgroups were identified, designated all-high (20.5%), moderate (39.9%), and all-low (39.6%) according to their symptom occurrence. Multivariate logistic regression showed that gender, post-transplant time, per capita monthly income, and hyperuricemia were the factors that distinguished and predicted the all-high subgroup (P < 0.05). Hierarchical multiple regression showed that symptom burden had a significant effect on FoP (class1 vs class3: β = 0.327, P < 0.001; class2 vs class3: β = 0.104, P = 0.046), explaining the 8.0% variance of FoP (ΔR² = 0.080).
Conclusion
KTRs generally experience moderate or low symptom burden, and symptom burden is an influencing factor in FoP. Identifying the traits of KTRs with high symptom burden can help clinicians develop targeted management strategies and ease FoP of KTRs.
... Exploratory analysis of the SPIRIT trial identified that the intervention had greater effect on some outcomes depending on ethnic group, highlighting that robust interventions need to be able to adapt to individual and demographic needs [61]. Furthermore, much of the qualitative work around patient experience of end-of-life care in ESKD has been limited to English-speaking patients [63]. The presence of a language barrier has been an exclusion criterion in many randomised controlled trials for pragmatic reasons ( Table 2), and this is a clear limitation of the evidence base and the generalisability of study findings where language was a barrier to participation. ...
Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances. However, there are many barriers to successful implementation of advance care planning in this population. In this narrative review we discuss the current evidence for advance care planning in patients on dialysis, the data around the barriers to advance care planning implementation, and interventions that have been trialled. The review explores whether the concepts and approaches to advance care planning in this population need to be updated to encompass current and future care. It suggests that a shift from a problem-orientated approach to a goal-orientated approach may lead to better engagement, with more patient-centred and satisfying outcomes.
Graphical abstract
... Of note, patient-reported outcomes, which include HRQoL and symptoms such as fatigue, have been highlighted by people with chronic kidney disease as being more important than clinical outcomes, such as mortality. 8 Consequently, interventions to enhance physical activity, mental health, and HRQoL are of global interest, and are even more crucial given the emotional distress and increased risk of poor mental health resulting from the COVID-19 pandemic. 9 The pandemic particularly affected people with chronic kidney disease, many of whom are clinically extremely vulnerable and were forced to self-isolate. ...
... MCS) between baseline and 12 weeks. This patient-reported outcome was selected after consultation with the trial's patient and public involvement panel, is supported more widely by the views of people with chronic kidney disease, 8 and is theoretically justified by the reported association between physical activity, mental health, and HRQoL. [2][3][4] Secondary outcomes were the difference between baseline and 12 weeks in: the KDQoL-SF1.3 ...
This trial assessed the feasibility and acceptability of Kidney BEAM, a physical activity and emotional well-being self-management digital health intervention (DHI) for people with chronic kidney disease (CKD), which offers live and on-demand physical activity sessions, educational blogs and videos, and peer support. In this mixed-methods, multicentre randomised waitlist-controlled internal pilot, adults with established CKD were recruited from five NHS hospitals and randomised 1:1 to Kidney BEAM or waitlist control. Feasibility outcomes were based upon a priori progression criteria. Acceptability was primarily explored via individual semi-structured interviews (n = 15). Of 763 individuals screened, n = 519 (68%, 95% CI 65 to 71%) were eligible. Of those eligible, n = 303 (58%, 95% CI 54–63%) did not respond to an invitation to participate by the end of the pilot period. Of the 216 responders, 50 (23%, 95% CI 18–29%) consented. Of the 42 randomised, n = 22 (10 (45%) male; 49 ± 16 years; 14 (64%) White British) were allocated to Kidney BEAM and n = 20 (12 (55%) male; 56 ± 11 years; 15 (68%) White British) to the waitlist control group. Overall, n = 15 (30%, 95% CI 18–45%) withdrew during the pilot phase. Participants completed a median of 14 (IQR 5–21) sessions. At baseline, 90–100% of outcome data (patient reported outcome measures and a remotely conducted physical function test) were completed and 62–83% completed at 12 weeks follow-up. Interview data revealed that remote trial procedures were acceptable. Participants’ reported that Kidney BEAM increased their opportunity and motivation to be physically active, however, lack of time remained an ongoing barrier to engagement with the DHI. An randomised controlled trial of Kidney BEAM is feasible and acceptable, with adaptations to increase recruitment, retention and engagement.
Trial registration NCT04872933. Date of first registration 05/05/2021.
... All the papers were categorised according to their nature (singly or double focused) by the criteria of the reviewer who proceeded to divide them into three themes based on the user-generated contents categorization (Clarkson et al., 2020;Filo et al., 2015;Franco et al., 2015;Morton et al. 2010), which is also accorded to the pyramidal levels (hierarchy) of workers discussed within the articles: (1) owners, directors, managers and admins; ...
... The constructivist approach adopted, with its generalisability (Holloway, 1997;Sánchez, 2010;Schwandt, 1997) and reflexive rationale paradigms (Denzin & Lincoln, 2000;Finlay, 2002;Kincheloe, 2005), underlined the major emphasis on descriptive-narrative findings at the expenses of analytical or rational-logical contributions, where exploratory research pathways are normally preferred to predictive ones (Morton et al. 2010). The main rationale intuited for the available sample is because, although such articles were positively assessed and included in the present evaluation, in most of cases, both assessment of dependent/independent variables have been analysed only under a qualitative point of view, or simply among the secondary reasons of the implementation of the corresponding studies. ...
Fitness equipment nowadays represent something common in human beings daily life routines. For this reason, the number of sector professionals and human resources are quantitatively and significantly increasing worldwide. This paper provides a comprehensive systematic review of the current status of scientific research on field workers in relation to the usage of fitness products and resources. The performed thematic synthesis allowed to define and sort contents into three pyramidal categories and selected keywords offered about 49 articles that have been extensively analysed: (1) owners / directors; (2) personal trainers; and (3) instructors. Discussions of each category and all the existing relationships with fitness equipment are advanced and defined. Health and sport workers must recognise the relevant contribution of these stakeholders’ characteristics in the way to maximise the role of fitness equipment in promoting leisure and healthy habits inside societies. In addition, practitioners and researchers could take advantage in deepening knowledge and education on these kinds of resources. Due to the current importance of the sector, standardization and regulation of each fitness industry work category is ready to be strengthened also under these scientific to practice points of view. Keywords: fitness directors, fitness equipment, fitness professionals, fitness workers, personal trainers
... Of note, patient-reported outcomes, which include HRQoL and symptoms such as fatigue, have been highlighted by people with chronic kidney disease as being more important than clinical outcomes, such as mortality. 8 Consequently, interventions to enhance physical activity, mental health, and HRQoL are of global interest, and are even more crucial given the emotional distress and increased risk of poor mental health resulting from the COVID-19 pandemic. 9 The pandemic particularly affected people with chronic kidney disease, many of whom are clinically extremely vulnerable and were forced to self-isolate. ...
... MCS) between baseline and 12 weeks. This patient-reported outcome was selected after consultation with the trial's patient and public involvement panel, is supported more widely by the views of people with chronic kidney disease, 8 and is theoretically justified by the reported association between physical activity, mental health, and HRQoL. [2][3][4] Secondary outcomes were the difference between baseline and 12 weeks in: the KDQoL-SF1.3 ...
... After receiving a diagnosis of the illness, the individual's biopsychosocial status suffers, their interactions with their social surroundings are damaged, and it becomes necessary for them to alter their daily tasks and obligations [18]. According to the findings of the study done by Mutlu (2007), 59% of the patients with chronic renal failure stated that their relationships with their friends and family were impaired, 12.8% of them stated that they had to move, 33.3% of them stated that they were unable to fulfil their roles and responsibilities, 1.7% of them stated that their spouses and children had abandoned them, and 38.5% of them stated that their expectations about other people were not met [19]. Physical exhaustion may linger for several hours or even days as a result of the long-term dependence on the machine required for dialysis treatment [20][21][22]. ...
... Patients with renal issues in Iraq commonly manifest depression, which makes them less willing to cooperate with therapy and commit to regular doctor visits [29]. According to Morton et al. (2010), dialysis patients have less developed friendships and communication abilities than individuals in general health [30]. Numerous studies reveal that anxiety, depression, and despair are the most typical emotional difficulties faced by dialysis patients. ...
The treatment options that have an impact on quality of life include dialysis. This qualitative study aims to shed light on how hemodialysis patients see their experiences with depression and other psychological issues. End-stage renal illness is a global issue that affects many people in various nations and is treated with either transplantation or hemodialysis. The purpose of this study is to evaluate how hemodialysis would affect patients' psychological states and how these individuals will change in response to hemodialysis. A cross-sectional study of 120 people were chosen, 75 of whom were men and 45 of whom were women. Between December 2022 and March 2023, it was carried out at the kidney foundation hospital and research institute in Bangladesh. Information gathering based on patient interviews conducted by our research team and the unit at the kidney foundation hospital. Themes that emerged from the analysis point to hemodialysis, propensity was depression. Additionally, the results show that the majority of them have diabetic nephropathy and are in a terrible to moderate psychological state, as seen by their inability to communicate and their lack of response to family members' and doctors' instructions. Among all the patients 15% patients have got up with hepatitis and rest of time were clear from hepatitis.
