No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Quality of Care in Inflammatory Bowel Disease: Actual Health Service Experiences Fall Short of the Standards
Abstract
Background:
Quality of care in IBD has received much attention internationally, however, the available surveys focus on health professionals rather than patients.
Aims:
The study aimed to assess the experiences of health care for people living with inflammatory bowel disease (IBD) against established Australian IBD Standards.
Methods:
An online cross-sectional survey was conducted with Australians >/= 16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics and the Royal Flying Doctor Service. Participants completed a questionnaire incorporating items addressing the Australian IBD Standards 2016, the Picker Patient Experience Questionnaire, IBD Control Survey, and the Manitoba Index.
Results:
Complete data was provided by 731 respondents (71.5% female, median age 46 years, ranging from 16 to 84 years). While the majority (74.8%) were satisfied with their IBD healthcare, the care reported did not meet the Australian IBD Standards. Overall, 32.4% had access to IBD nurses, 30.9% to a dietitian, and 12% to a psychologist in their treating team. Participants managed by public IBD clinics were most likely to have access to an IBD nurse (83.7%), helpline (80.7%), and research trials (37%). A third of respondents reported waiting >14 days to see a specialist when their IBD flared. Participants received enough information; mostly from medical specialists (88.8%) and IBD nurses (79.4%). However, 51% wanted to be more involved in their healthcare.
Conclusions:
These data show discordance between expectations of patients and national standards with current levels of service provision which fail to deliver equitable and comprehensive IBD care. This article is protected by copyright. All rights reserved.
... [19][20][21] A subsequent online cross-sectional survey assessing IBD standards in Australia was performed in 2018. 22 The key difference to this survey was that patients, rather than hospitals, were invited to complete the survey. The majority (74.8%) of the 731 patients who completed the survey were satisfied with their IBD care. ...
... Given the complexities and heterogeneity of IBD, ideally all IBD patients would be seen and advised by a dietitian, well-versed in IBD. IBD guidelines recommend that patients have access to a gastroenterology dietitian as part of their IBD service, 29 but in Australia, only 31% of adult public IBD services have access to a dietitian, 22 falling short of the Australian IBD care standards. 16 As there is variability across different states and regions, many adult IBD patients likely have limited access to dietitian services. ...
... Barriers to engagement with mental health services in Australia include a lack of IBD clinicians and nurses exploring mental illness, a lack of willingness of patients to engage in mental health services, a paucity of mental health professionals as part of the multidisciplinary IBD teams as demonstrated by the national surveys 17,22 and the sometimes prohibitive costs of seeing a psychologist. Most psychological services in Australia are privately based and incur fees. ...
Australasia, encompassing Australia, New Zealand, and Papua New Guinea, has some of the highest prevalence’s of inflammatory bowel disease (IBD) in the world. The way IBD medicine is practiced varies between and within these countries. There are numerous shared issues of IBD care between Australia and New Zealand, whereas Papua New Guinea has its’ own unique set of circumstances. This review looks to explore some of the barriers to IBD care across the continent from the perspective of local IBD healthcare professionals. Barriers to IBD care that are explored include access to IBD multidisciplinary teams, provision of nutritional-based therapies, the prevalence and engagement of IBD-associated mental health disorders, access to medicine, access to endoscopy, rural barriers to care, Indigenous IBD care and paediatric issues. We look to highlight areas where improvements to IBD care across Australasia could be made as well as address research needs.
... Audit recommendations repeatedly involved the relationship between patients and their IBD team, indicating the important role of clinician-patient communication in reducing this disease burden. A related survey of over 700 IBD patients in Australia (3,4) that came out of the audit confirmed many of the audit's findings from the patient's point of view and highlighted some additional concerns relevant to communication. In particular, 51% of the respondents wanted to be more involved in decisions regarding their care (3). ...
... A related survey of over 700 IBD patients in Australia (3,4) that came out of the audit confirmed many of the audit's findings from the patient's point of view and highlighted some additional concerns relevant to communication. In particular, 51% of the respondents wanted to be more involved in decisions regarding their care (3). Half of all respondents registered as mildly, moderately or severely distressed on psychological testing but only 32% of those in severe distress were receiving care from a mental health clinician (4). ...
... Correspondingly, 56% of the patients who were not asked about their mental health by their specialist or IBD nurse wanted to be asked about this. Many patients also reported in this survey that no contingency plans were in place, or had never been discussed with their IBD clinicians (3). ...
Background
In the absence of targeted empirical evidence on effective clinical communication in inflammatory bowel disease (IBD), a broad overview of existing evidence on effective communication in healthcare and available recommendations for communication in telehealth is provided and mapped onto IBD research and practice.
Methods
A narrative literature review was conducted using Pubmed and Scopus databases and snowballing literature search.
Results
Evidence-based relationship building strategies include communicating emotions, acknowledging and addressing patients’ hesitancy, and ensuring continued support. A particular recommendation regarding telehealth interaction is to avoid long stretches of talk. Effective informational strategies include facilitating and supporting information exchange and considering patients’ preferences in decision making. In teleconsultations, clinicians should ask direct questions about patients’ emotional state, clarify their understanding of patients’ concerns and check patients’ understanding, address at least one patient-reported outcome when discussing the recommended treatment, and shorten the consultation where possible. Strategies for maximising effective clinical communication in the spoken communicative mode include using infographics and simple language, and assessing adherence at the beginning of the consultation. For teleconsultations, clinicians are advised to allow patients to explain the reason for their call at the beginning of the teleconsultation, probe additional concerns early and before ending the teleconsultation, and be mindful of technical issues such as voice delays.
Conclusions
Use of question prompt lists, decision aids, micro-lessons, and communication training interventions for clinicians could be beneficial in IBD care. Further research into the implementation of such interventions as well as clinical communication concerns specific to IBD is warranted.
... However, the mainstream usual care in IBD continues to rely heavily on gastroenterologists, with little utilization of other healthcare providers such as general practitioners, psychologists or dieticians (Prasad et al., 2020). Australian studies of IBD care highlighted that only 1% of patients had access to a full IBD team, 39% had access to an IBD nurse, 38-40% had nutritional screening on hospital admission, 4% had access to a psychologist, and only 28% of patients had a protocol in place for managing severe IBD flares (CCA, 2016b;Mikocka-Walus et al., 2020c). ...
... In a previous survey, working in collaboration with a consumer organisation, we explored the needs and access to psychological care alongside the prevalence of distress in Australians with IBD (Mikocka-Walus, Massuger, et al., 2020b, 2020c. Only 16% reported being asked about their mental health despite half of the respondents indicating psychological distress. ...
... Although this study confirms prior mixed-methods and qualitative research from the UK, USA and Australia, which identified patients desired biopsychosocial healthcare integration (Craven et al., 2019), increased access to healthcare, communication, and public awareness (Mikocka-Walus et al., 2018, 2020a2020b, 2020c, the current study extends on this by involving a larger and more diverse sample. In particular, the current results triangulate those coming from quantitative studies documenting the importance of multidisciplinary care: not only is it more effective on objective measures (Lores et al., 2020;Sack et al., 2012) and desired by healthcare professionals (Mikocka-Walus et al., 2014), but patients with IBD directly call for their healthcare to be different to the status quo (Craven et al., 2019;Mikocka-Walus et al., 2020a, 2020b, 2020c. ...
This study reports on the preferences of people with inflammatory bowel disease (IBD) for their healthcare. Overall, 477 people with IBD responded to an open-ended survey question within a larger study. We qualitatively content-analysed these responses with open coding using NVivo. Respondents expressed a desire for (1) better communication, (2) multidisciplinary care, (3) better treatment, services and specialist care, (4) whole person care, (5) health promotion, (6) proactive healthcare, (7) fewer administrative issues and (8) improved hospital experience. Patients with IBD want patient-centred, multidisciplinary care. Healthcare professionals should facilitate patients’ access to proactive care.
... 12 The full methods are presented elsewhere. 17 Participants. People diagnosed with Crohn's disease, ulcerative colitis, or indeterminate colitis (self-reported) who were aged 16 years or older were recruited via Crohn's & Colitis Australia membership, public and private medical clinics throughout Australia, and the Royal Flying Doctor Service. ...
... Measures. In addition to the demographics, disease activity, and the quality of care measures previously described, 17 psychological distress was also measured using the Kessler Psychological Distress Scale (K10). K10 18 is a simple measure of psychological distress using a 5-point Likert scale. ...
... Full demographics and clinical characteristics are presented elsewhere. 17 Psychological care in IBD (Australian IBD Standard A13) Level of distress. The mean level of distress for these respondents (K10 = 20.9) was within the mild distress category (20)(21)(22)(23)(24), while 51% of respondents reported good mental health (K10 score < 20), and 15% reported severe distress (K10 score ≥ 30) ( Table 1). ...
Background and aim:
Data on patient needs and access to psychological services in inflammatory bowel disease (IBD) are scarce. This study aimed to describe the levels of distress and the needs, attitudes, and access to psychological services for people within Australia against established Australian IBD Standards.
Methods:
An online cross-sectional survey was conducted with Australians ≥16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics, and the Royal Flying Doctor Service. K10 was used to measure psychological distress. The Chi-square test was used to compare those with and without distress on key variables.
Results:
Overall, 731 respondents provided complete data (71.5% female, mean age 46.5 years). Overall, 50% of respondents reported distress; only 15.2% were currently seeing a mental health practitioner; only 16.1% were asked about their mental health by their IBD specialist or IBD nurse; and only 12.2% reported access to a mental health practitioner as part of their IBD service. Those with psychological distress were significantly less satisfied with their IBD care; more commonly hospitalized; had an active disease, fistula or perianal disease, pain, or fatigue; and were receiving steroids, opioids, or antidepressants (all P < 0.05). As many as 68.2% of those with severe distress were not seeing a mental health practitioner.
Conclusions:
The integrated biopsychosocial model of health care, with regular mental health screening and good access to mental health professionals, is requested by people living with IBD to improve their outcomes.
... Where integrated, psychological care has been associated with reduced unplanned healthcare use, increased treatment adherence and improved mental health and quality of life [4,7]. However, psychological care is often absent from IBD care settings [8][9][10]. Recent research has highlighted a desire for greater recognition of psychological concerns [11], more mental health discussion with IBD clinicians [8] and increased access to treatment options [12]. ...
... Making services and interventions accessible is also important. Only 16% of study participants reported current access to psychological care in their IBD setting, consistent with past research [8,10]. Of note, nearly half (42%) raised access for family members and partners-this is in line with a recent systematic review which identified the need for greater education, social support and mental health input for IBD carers [28]. ...
Background
There is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease.
Aims
This study qualitatively explored the views of people living with IBD to help inform future co-design of services that better meet the psychological needs of consumers.
Methods
Adults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional qualitative content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies.
Results
Thirty-one participants took part in the study: 10 focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines.
Conclusions
The findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.
Graphical Abstract
... 68 This is despite being a requirement of the Australian IBD standards. 80 A recent summit organised by Crohn's and Colitis Canada highlighted a similar situation where people with IBD described the need to improve access to qualified dietitians with experience in IBD, especially in regional areas where access is often challenging. 16 Interestingly, dietitians who have limited exposure to IBD, reported feeling ill equipped to provide individualised advice to this cohort, which in turn impacts on patient satisfaction with the care received. ...
... The divergent views on the role of diet in IBD, and lack of understanding of how the dietitian could contribute to IBD management might influence automatic referral to IBD focussed dietitians. 23,80,85 When combining lack of IBD focussed dietitian services, inadequate staffing levels, limited government funded visits and cost, and cultural barriers, it is no surprise people with IBD are not accessing IBD focussed dietitian services. Future studies could assess the reasons for inadequate access particularly in regional areas, to support equitable care across Australia. ...
Background
Inflammatory bowel disease (IBD) is an incurable illness of the gastrointestinal tract. Its relapsing–remitting nature negatively impacts physical health and quality of life. Food and eating are key concerns for people with this illness. To provide holistic person‐centred care, healthcare providers (HCPs) need to meet patients’ dietary information needs. However, there is a paucity of literature describing these in any meaningful detail. The present study aimed to explore the perceived dietary information needs of individuals with IBD, the perceptions of HCPs and enablers and barriers to communication.
Methods
Online and face‐to‐face semi‐structured interviews with 13 HCPs and 29 people with IBD were conducted. The framework method aided thematic analysis of de‐identified interview recordings.
Results
The cyclical nature of IBD contextualised the five themes. Both individuals with IBD and HCPs articulated similar ideas viewed from different perspectives: (1) living with IBD is exasperating and unique to the individual; (2) individuals with IBD desire dietary information; (3) diet manipulation is used to exert control on a disease with unpredictable nature; (4) people with IBD and HCPs have different views on the role of diet; and (5) doctors are perceived as gatekeepers to accessing dietetics care.
Conclusions
A lack of dietary guidance at diagnosis negatively impacts the patient's journey with food and eating. The present study supports a paradigm shift towards holistic person‐centred care for consistent access to dietetics services to meet the needs of people with IBD.
... Where integrated, psychological care has been associated with reduced healthcare use, increased treatment adherence and improved mental health and quality of life [4,7]. However, psychological care is often absent from IBD care settings [8][9][10]. Recent research has highlighted a desire for greater recognition of psychological concerns [11], more mental health discussion with IBD clinicians [8] and increased access to treatment options [12]. ...
... Making services and interventions accessible is also important. Only 16% of study participants reported current access to psychological care in their IBD setting, consistent with past research [8,10]. Of note, nearly half (42%) raised access for family members and partners -this is in line with a recent systematic review which identi ed the need for greater education, social support and mental health input for IBD carers [20]. ...
Background
There is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease.
Aims
This study qualitatively explored the views of people living with IBD to help co-design future services that better meet the psychological needs of consumers.
Methods
Adults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies.
Results
Thirty-one participants took part in the study: ten focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines.
Conclusions
The findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-Centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.
... 68 This is despite being a requirement of the Australian IBD standards. 80 A recent summit organised by Crohn's and Colitis Canada highlighted a similar situation where people with IBD described the need to improve access to qualified dietitians with experience in IBD, especially in regional areas where access is often challenging. 16 Interestingly, dietitians who have limited exposure to IBD, reported feeling ill equipped to provide individualised advice to this cohort, which in turn impacts on patient satisfaction with the care received. ...
... The divergent views on the role of diet in IBD, and lack of understanding of how the dietitian could contribute to IBD management might influence automatic referral to IBD focussed dietitians. 23,80,85 When combining lack of IBD focussed dietitian services, inadequate staffing levels, limited government funded visits and cost, and cultural barriers, it is no surprise people with IBD are not accessing IBD focussed dietitian services. Future studies could assess the reasons for inadequate access particularly in regional areas, to support equitable care across Australia. ...
Aims
This review aimed to explore and describe the dietary information needs of individuals with inflammatory bowel disease and sources of information.
Methods
A scoping review of English language articles and grey literature, using electronic databases with a predefined search strategy was undertaken. Data were synthesised based on the identified variables (e.g. dietary information needs and sources of dietary information) corresponding to the aims of this review.
Results
Forty‐six studies were included, reporting data from 7557 people with inflammatory bowel disease, of which 58.6% had Crohn's disease and 60.1% were males. Dietary information was rated very important and appeared to be influenced by the disease course. The need to discuss it is heightened at important stages, namely diagnosis and relapse. Dietary information was described broadly and included advice about foods to avoid and dietary advice for symptoms management. No major differences were noted in the dietary information needs of people with Crohn's disease compared to ulcerative colitis. The main sources of dietary information were the gastroenterologist (36%–98%), the internet (9%–60%) and non‐dietetic professionals (84.7%).
Conclusion
This review highlights limited literature describing the dietary information needs of people with inflammatory bowel disease. Importantly, the limited access to specialised dietary advice for this cohort is concerning. Future studies are required to explore not only the nuances in the needs of those with active disease and in remission, but to further understand issues of access to specialised dietary advice to provide holistic person‐centred care desired by this cohort.
... Based on international research, it was likely that many patients would not have seen a dietitian for IBD nutrition advice. [28][29][30][31] Half of the New Zealand patients surveyed had seen a dietitian, slightly more than the 12-47% reported in the UK, USA and Australia. 28,[30][31][32] The patient cohort in the current study included paediatric patients that may explain the higher proportion, as most other research was limited to adult patients. ...
... [28][29][30][31] Half of the New Zealand patients surveyed had seen a dietitian, slightly more than the 12-47% reported in the UK, USA and Australia. 28,[30][31][32] The patient cohort in the current study included paediatric patients that may explain the higher proportion, as most other research was limited to adult patients. The current study found that younger patients were more likely to have seen a dietitian and paediatric gastroenterologists referred a greater proportion of their patients to dietetic services than adult gastroenterologists. ...
Aim:
Nutritional therapies for inflammatory bowel disease are increasingly recommended. This study aimed to gain insight from patients, dietitians and gastroenterologists into inflammatory bowel disease dietetic care in New Zealand.
Methods:
Mixed-methods surveys were developed and then distributed online to patients with inflammatory bowel disease and dietitians and gastroenterologists that care for patients with inflammatory bowel disease. Quantitative survey data were analysed using nonparametric statistical tests. Qualitative survey data were analysed using thematic analysis.
Results:
Responses were received from 406 inflammatory bowel disease patients, 79 dietitians and 40 gastroenterologists. Half of the patients (52%) had seen a dietitian for nutrition advice. Patients more likely to have seen a dietitian were/had: Crohn's disease (p = 0.001), previous bowel surgery (p < 0.001), younger (p < 0.001) or receiving biologic therapy (p = 0.005). Two-thirds (66%) of patients found the dietitian advice at least moderately useful. A common theme from patient comments was that dietitians needed better knowledge of inflammatory bowel disease. Almost all (97%) gastroenterologists reported that their inflammatory bowel disease patients ask about nutrition; 57% reported that there were inadequate dietitians to meet patient needs. Over 50% of dietitians saw inflammatory bowel disease patients infrequently and 39% were not confident that their knowledge of the nutritional management of inflammatory bowel disease was current. Dietitians desired greater links with the inflammatory bowel disease multidisciplinary team.
Conclusion:
Current inflammatory bowel disease dietetic services in New Zealand are inadequate. Standardised care, increased resourcing, dietitian training in inflammatory bowel disease, and stronger links with the multidisciplinary team are suggested to improve services.
... The significance of these results has led to changes in international IBD management guidelines to include mental health screening and treatment [20]. Conversely, research has found that IBD quality of care does not meet that of international guidelines [21]. In Australia for example, only 4% of IBD clinical services have psychological interventions incorporated into routine treatment protocols [22]. ...
... International IBD management guidelines have emphasized the inclusion of mental health screening and treatment, due to the significant mental health comorbidities found in individuals with IBD, including anxiety, depression, and stress [9][10][11][12][13][14][15][16][17]20]. Conversely, research has found that IBD quality of care does not meet that of international guidelines [21]. In Australia for example, only 4% of IBD clinical services have psychological interventions incorporated into routine treatment protocols [22], thereby identifying a major gap in effective and wholistic IBD treatment. ...
Background:
Mental health has been identified as contributing to the pathogenesis of Inflammatory Bowel Disease (IBD). Resultingly, psychotherapeutic interventions, such as Mindfulness-Based Interventions (MBI), have been increasingly investigated for improving IBD outcomes.
Objectives:
To systematically review the current state of evidence of MBI's for individuals living with IBD.
Methods:
We performed a systematic review searching Medline, PsychINFO, CINAHL, Embase, Cochrane and Scopus, to identify controlled clinical trials, investigating MBI's for various IBD biopsychosocial outcomes. Data was pooled using the inverse-variance random effects model, with restricted maximum likelihood estimation, providing the standardized mean difference (SMD) between control and experimental groups, at both short and long-term follow up.
Results:
We identified 8 studies with 575 participants. Meta-analytic results found that MBI's were more efficacious than control groups in the short-term improvement of stress (SMD = -0.38, 95% CI [-0.65, -0.10], p = 0.007), mindfulness (SMD = 0.59, 95% CI [0.36, 0.83], p = 0.00001), C-Reactive Protein (CRP) (SMD = -0.25, 95% CI [-0.49, -0.01], p = 0.04) and health-related quality of life (HRQoL) (SMD = 0.45, 95% CI [0.24, 0.66], p = 0.0001) (including all emotional, bowel, social and systemic subscales). This was maintained in the long-term for stress (SMD = -0.44, 95% CI [-0.88, -0.01], p < 0.05) and mindfulness (SMD = 0.52, 95% CI [0.14, 0.90], p = 0.008), but not for HRQoL, with no long-term data available for CRP.
Conclusions:
Given that MBI's appear to be effective in improving several IBD outcomes, they may be a useful adjuvant therapy in wholistic IBD care, with further trials warranted.
... 1,3 The symptoms experienced by 2 Healthcare Needs and Perceptions of People Living With IBD in Australia people with active disease negatively impact their physical, social, and psychological wellbeing. 4 These include severe abdominal pain, loss of bowel control, frequent bloody diarrhea, weight loss, fatigue, and anxiety or depression. Illnessrelated loss of employment and limited social interactions also contribute to a reduced quality of life (QoL). ...
... 7 Studies have shown that increased pain perception among people living with IBD is associated with anxiety and depression, 8,9 and disease flares are linked with poor QoL. 7 Disease severity has been linked to psychological distress that resulted in poor coping 4,8 and fear of medication-related adverse effects have been associated with nonadherence. 10,11 The need for long-term use of medical therapies to maintain disease remission, therefore, creates other obstacles for patients. ...
Background
Crohn’s disease, ulcerative colitis and indeterminate colitis are inflammatory bowel diseases (IBD) that adversely affect health care needs and quality of life of people with IBD. The aim of this study was to explore the needs and perceptions of people with IBD in a primary care setting.
Methods
This sequential explanatory mixed method study consisted of a cross-sectional survey (included validated tools), followed by semi-structured interviews on participants’ perceptions: IBD management, healthcare professionals, IBD-care, flare-management and pharmacist’s IBD roles.
Results
Sixty-seven participants completed the survey, and eight completed interviews. Quantitative findings: Age at diagnosis had significant association with medication non-adherence (p=0.04), quality of life (p=0.04) and disease control (p=0.01) among the respondents. The odds of medication non-adherence were 8 times (AOR=8.04, 95% CI= 1.08, 60.10) higher among younger participants aged <30years. Those diagnosed with Crohn’s disease (p=0.02) reported more likely to have unfavourable perceptions of pharmacists role in managing their IBD (AOR=9.45, 95% CI= 1.57, 56.62) than those with ulcerative colitis and indeterminate colitis. Qualitative findings: General practitioners (GPs) were considered the most important care provider and the first point of contact for patients in managing all aspects of IBD. Participants identified their key need to be timely access to specialised IBD care and found that other primary healthcare professionals lacked disease specific knowledge for managing IBD.
Conclusion
Primary healthcare professionals are well-positioned but need targeted training to influence needs of IBD patients. The specialty role of an IBD educator could complement existing services to deliver and address patient specific care.
... Despite the lack of a predictive link in this study, mental health care for children with IBD remains an important aspect of comprehensive IBD treatment. [33][34][35][36] Although children with IBD are at higher risk for depression and anxiety, mental health care for children with IBD is often sparse and inconsistent. 34,[37][38][39] In a retrospective review of children with CD seen at a gastroenterology practice in New York City, only 22% (94 of 424) of patients were approached to complete a routine anxiety symptom questionnaire during their gastroenterology visit within the study time period. ...
... [33][34][35][36] Although children with IBD are at higher risk for depression and anxiety, mental health care for children with IBD is often sparse and inconsistent. 34,[37][38][39] In a retrospective review of children with CD seen at a gastroenterology practice in New York City, only 22% (94 of 424) of patients were approached to complete a routine anxiety symptom questionnaire during their gastroenterology visit within the study time period. 6 Barriers to integration of mental health services in pediatric IBD care include a lack of trained mental health professionals specializing in pediatrics and cost concerns limiting the number of pediatric clinical GI centers with IBD-trained psychologists or counselors. ...
Background:
Studies of adults with Crohn's disease (CD) suggest that poor mental health precedes worsening disease activity. We evaluated whether depression and/or anxiety forecast worsening pediatric CD disease activity.
Methods:
Through the Inflammatory Bowel Disease Partners Kids & Teens internet-based cohort, children with CD age 9 to 17 completed Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures and the short Crohn's disease activity index (sCDAI). Using general linear models, we examined how baseline PROMIS Pediatric anxiety and depressive symptom scores independently associate with subsequent sCDAI scores (average survey interval 6.4 months). Models included baseline PROMIS Pediatric anxiety and depressive symptoms scores, baseline sCDAI, sex, age, parental education, race/ethnicity, and prior IBD-related surgery. We performed a post hoc subanalysis of children in baseline remission (sCDAI <150) with otherwise identical models.
Results:
We analyzed 159 children with CD (mean age 14 years, 45% female, 84% in baseline remission). We found no association between baseline PROMIS Pediatric anxiety score and subsequent sCDAI (change in sCDAI for 3-point change in PROMIS Pediatric -0.89; 95% CI -4.81 to 3.03). Baseline PROMIS Pediatric depressive symptoms score was not associated with future sCDAI (change in sCDAI for 3-point change in PROMIS Pediatric <0.01; 95% CI -4.54 to 4.53). In a subanalysis of patients in remission at baseline, the lack of association remained.
Conclusion:
We found that neither anxiety nor depressive symptoms associate with subsequent disease activity in pediatric CD. These findings contrast with adult IBD studies, thus underschoring the unique pathophysiology, natural history, and outcomes of pediatric CD.
... 31,37 In the previously discussed audit (CCA IBD audit 2016), 1% of centres caring for people with IBD had a full MDT available, and approximately 31% had an IBD Nurse that had ongoing secure funding. 29,38,39 The benefits of the MDT to the care of children, adolescents, and adults with IBD are known to be multifactorial. MDT care is preferred by patients and represents a key pillar in the holistic assessment and management of the biopsychosocial consequences that manifest as a result of the condition. ...
Background and Aim
Children and adolescents account for approximately 14% of inflammatory bowel disease (IBD) diagnoses. At an appropriate age and level of development adolescents with IBD have their care transferred from the pediatric to adult clinical team during a process termed “transition”. The study aim was to survey pediatric gastroenterologists throughout Australasia to identify commonality in the transition process to contribute to standardized guideline development.
Methods
A descriptive survey captured key variables: transition clinic format, process and infrastructure, transition assessments, and guidelines. The survey was distributed electronically to 59 Pediatric Gastroenterologists throughout Australasia in January 2023.
Results
Seventeen (29%) clinicians completed the survey: Australia 13 (76%). New Zealand 4 (24%). Thirteen (76%) respondents had access to a dedicated IBD transition clinic. Adolescents attended transition clinics 1–7 times, and the main processes transferred were: prescription provision, biologic appointments, and adult team contacts. Transition was first discussed age 13–15 years (53%), or 16–18 years (47%), with the main discussion topics including: continuing adherence (88%), smoking (59%), alcohol use (59%), recreational drug use (59%). Transition readiness assessments were done infrequently (24%). The minority (24%) used formal guidelines to inform the transition process, but 15 (88%) considered the development of a standardized Australasian guideline as beneficial/extremely beneficial.
Conclusions
This survey highlighted that transition care for adolescents with IBD is variable across Australasia. Australasian guideline development may optimize the transition process for adolescents with IBD and improve their longitudinal outcomes.
... 3 4 A recent quality of care initiative has been undertaken by Crohn's & Colitis Australia (CCA) 5 to apply health literacy principles to better understand the experiences of people living with inflammatory bowel disease (IBD) and address the priority action to improve patient knowledge, as identified in the Australian Government's IBD National Action Plan 2019. [6][7][8][9] CCA is a national Australian NGO that represents and provides services to people with IBD. However, access to IBD information and care is inequitable, and CCA is aware that there are many Australians with IBD who are not reached by current communication and engagement activities. ...
... 1 However, only 4% of Australian hospital-based services were resourced with a mental health clinician in 2016, 2 and only 12% of patients with IBD reported having access to such a service. 3 Psychological symptoms are also associated with a range of poor outcomes including worse disease course and higher healthcare use. [4][5][6] We propose that proactive screening is one way to increase recognition of the mental health needs of people with IBD. ...
Psychological problems are prevalent in people with inflammatory bowel diseases but are not routinely addressed. To improve recognition, three psychological screening tools were integrated into clinical management software (Crohn Colitis Care). In the first 6 months, completion rates varied between participating sites, and approximately 23–34% of respondents scored in moderate or higher ranges for psychological distress. Evaluation of the clinical utility of the module to improve patient outcomes is recommended.
... 38 A survey from Australia revealed that IBD care often did not meet Australian quality standards: only 32.4% of patients surveyed had access to IBD nurses; 30.9% had access to a dietician; and 12% had access to a psychologist. 39 A Canadian survey of IBD care providers revealed similar results suggesting a lack of robust multidisciplinary care support, even amongst academic tertiary care centers. 40 It is of little benefit to recommend quality standards if there is limited capacity to implement these standards on the frontline of IBD care. ...
Background
Canada has the highest global age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Due to IBD patient volumes and limited resources, challenges to timely access to specialty care have emerged. To address this gap, the aim of this paper was to understand the experiences and perspectives of persons living with IBD with a focus on accessing health care.
Methods
Using a qualitative descriptive approach, patients diagnosed with IBD (≥18 years of age) were purposively sampled from rural and urban gastroenterology clinics and communities across Canada. Co-facilitated by a researcher and patient research partner, 14 focus groups were recorded, transcribed, and coded for themes. Thematic analysis was used to ascertain the congruence or discordance of IBD specialty care access experiences.
Results
A total of 63 individuals participated in the study. The majority of participants were female (41/63, 65%) and from urban/suburban regions (33/63, 52%), with a mean age of 48.39 (range 16–77 years). The analysis generated three main themes: (1) need for patient to be partner, (2) adapting IBD care access to individual context, and (3) patient-defined care priorities should guide access to IBD care.
Conclusions
The complexity of specialty care access for IBD patients cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the impact of these factors on accessing care. Using a patient-centered exploration of barriers and facilitators, IBD specialty care access in Canada can be better understood and improved on provincial and national levels.
... The sample was predominantly female, which is not unusual in online research with IBD populations (67)(68)(69)(70), but future studies should seek to target more male respondents. It is possible that our study attracted people who were interested in mindfulness, however, our recruitment flyers emphasized that mindfulness experience was not required to participate in the study. ...
Objectives
People with Crohn's disease and ulcerative colitis (inflammatory bowel disease: IBD), commonly experience high levels of depressive symptoms and stress and low levels of subjective wellbeing (SWB). Mindfulness is increasingly considered an adjuvant IBD treatment. The relationships between depression, disease symptoms and mindfulness have not previously been considered within the theory of SWB homeostasis. This theory states that SWB is normally maintained by a homeostatic system around a setpoint range but can fail when psychological challenges dominate consciousness. This study explored the relationship among SWB and patient-reported psychological and IBD symptoms and investigated whether mindfulness practice is independently associated with SWB homeostatic resilience.
Design
This cross-sectional study recruited participants through online IBD support groups.
Methods
Participants (n = 739; 62% Crohn's disease) detailed symptoms of depression and stress, patient-reported disease symptoms, and regularity of mindfulness practice.
Results
The sample had significantly lower SWB (hedges g = −0.98) than normative data. A logistic regression found mindfulness practice doubled the Crohn's disease participants' odds of reporting SWB within the normal homeostatic range, after controlling for psychological, physical, and demographic variables (OR 2.15, 95% CI: 1.27, 3.66). A one-point increase of patient-reported bowel symptoms reduced the participant's odds of reporting SWB in the normal homeostatic range by about a third (OR 0.66, 95% CI: 0.50, 0.85). However, the influence of mindfulness or disease symptoms on SWB was not observed for people with ulcerative colitis.
Conclusion
These findings provide initial evidence for an association between mindfulness and SWB homeostatic resilience in a clinical population.
... 3 4 A recent quality of care initiative has been undertaken by Crohn's & Colitis Australia (CCA) 5 to apply health literacy principles to better understand the experiences of people living with inflammatory bowel disease (IBD) and address the priority action to improve patient knowledge, as identified in the Australian Government's IBD National Action Plan 2019. [6][7][8][9] CCA is a national Australian NGO that represents and provides services to people with IBD. However, access to IBD information and care is inequitable, and CCA is aware that there are many Australians with IBD who are not reached by current communication and engagement activities. ...
Introduction:
Non-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn's & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers.
Methods and analysis:
Health literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people's experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021-2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes.
Ethics and dissemination:
Ethics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968-4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968-4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.
... IBD is associated with a range of debilitating symptoms, such as severe abdominal pains, urgent and frequent diarrhoea, faecal incontinence, anaemia, anxiety and depression that affect physical and mental health [3][4][5]. It is reported that IBD sufferers overall have a poorer quality of life, especially during the active disease state [5][6][7]. Specifically, individuals with IBD can have a range of issues that impact daily activities, for example, limited participation in social activities and frequent absence from work/school. Fears specifically centre on the need to be close to toilet facilities and the consequences of bowel incontinence [4,8,9]. ...
Background and aim: Managing patients with a chronic condition such as inflammatory bowel disease (IBD), requires a multidiscipline approach. The pharmacist might be the first point of contact for patients with initial symptoms or relapsing flares, yet there is no available literature on the role of pharmacists in IBD management. We conducted a survey to explore pharmacists’ confidence in and potential barriers to managing IBD and assess the impact of IBD education on their confidence in IBD management. Methods: Surveys assessing confidence levels in managing IBD, additional learning opportunities about IBD and barriers to their learning of IBD management were provided to pharmacists for completion before and after attending an IBD-specific education session at a national conference. Results: Of the 195 attendees, 125 participants completed the survey (64%). Most respondents reported a low to mid-range level of confidence with managing IBD. Specifically, they were only slightly confident in decision making on patient care, addressing patient needs and providing additional support for IBD patients; and somewhat confident with understanding, management and providing relevant information on IBD. Whist the education session improved pharmacists perceived level of confidence, most respondents indicated a need to learn more about IBD. Areas of additional learning included science, drug therapy, treatments (includes non-pharmacological options as well) and guidelines. A majority of pharmacists identified time constraints as a key barrier to learning. Conclusion: Pharmacists lack sufficient confidence about managing inflammatory bowel disease. These data indicate support within the pharmacy profession to play a more active role in the management of IBD.
Background
There is limited research on psychotherapeutic intervention preferences for individuals with IBD experiencing fatigue. The current study aimed to examine psychotherapy preferences, comparing ACT, CBT, and MBI, for individuals with IBD experiencing clinically significant fatigue. Predictors of psychotherapy preference, including participant demographic or health-related variables, were also examined.
Methods
An online cross-sectional survey was administered. Frequencies were provided for preferences between ACT vs MBI, and separately for ACT vs CBT. Binomial logistic regressions were used to determine which participant demographic or health-related variables, were predictors of psychotherapy preference.
Results
The final sample consisted of 660 individuals with IBD experiencing clinically significant fatigue. Over two thirds of the sample preferred ACT (68.5%) over MBI (31.5%). Similarly, over two thirds of the sample preferred ACT (68.8%) over CBT (31.2%). Participants who scored higher on the DASS-21 depression subscale were more likely to choose ACT over MBI (OR 1.06, 95% CI [1.01, 1.11], p = 0.02). Conversely, participants who scored higher on the DASS-21 anxiety subscale were less likely to choose ACT over MBI (OR 0.93, 95% CI [0.87,0.99], p = 0.01). There were no significant predictors for preference of ACT over CBT.
Conclusions
Participants psychotherapy preferences, and their predictors, should be considered in designing future trials for IBD.
The current study explored perspectives of those with inflammatory bowel disease (IBD) and comorbid anxiety and/or depression on a hybrid acceptance and committment therapy (ACT) intervention, compared to an active control. This qualitative study was nested within a randomized controlled trial (RCT) where an experimental group received an 8-week blended delivery ACTforIBD intervention (four sessions telehealth, four sessions pre-recorded self-directed), while an active control group received a psychoeducation program of similar intensity. Semi-structured interviews were conducted post-intervention and at a 3-month follow-up. Themes were interpreted using reflexive thematic analysis. Twenty individuals participated; ten in each condition. Seven themes were constructed, including three shared themes between groups: I Am Worth Advocating For, Present Moment Is My Biggest Ally, and Ambivalence About Self-Directed Modules. Two themes were identified for the ACTforIBD group: Symptoms Are Going to Happen and Moving Toward Values while two themes identified from the ActiveControl group were: Reset and Refresh and It’s Ok to Say No. Acceptance and values modules from ACTforIBD were perceived as useful in reducing psychological distress for those with IBD, while the ActiveControl group felt their program affirmed existing effective coping strategies. Access to external resources for self-directed modules and networking may increase engagement with content long term.
The documentation of psychological trauma is obviously a challenge to clinicians while they are diving deep into remote events related to their clients or patients. The potential role of psychological trauma in the early developmental stages, and even the existence of adverse childhood experiences, is important to prove, yet it is difficult to do so. A diverse range of methods have been applied, all of which presumably benchmark a big therapeutic step; however, these enthusiastic methods frequently do not last for long. While hypnosis supporters, Freudian and Neo-Freudian disciples can be acute enough to enhance and uncover suppressed memories, modern psychiatry relies mostly on diversely structured interviews. Functional magnetic resonance and its related subtleties might help, but the questions that remain unanswered are numerous and confusing. Connecting early experiences with long-term memory while identifying psychological trauma its importance for the individual’s growth trajectory; thus, it remains an intriguing issue.
Rising compounding prevalence of inflammatory bowel disease (IBD) (Kaplan GG, Windsor JW. The four epidemiological stages in the global evolution of inflammatory bowel disease. Nat Rev Gastroenterol Hepatol. 2021;18:56–66.) and pandemic-exacerbated health system resource limitations have resulted in significant variability in access to high-quality, evidence-based, person-centered specialty care for Canadians living with IBD. Individuals with IBD have identified long wait times, gaps in biopsychosocial care, treatment and travel expenses, and geographic and provider variation in IBD specialty care and knowledge as some of the key barriers to access. Care delivered within integrated models of care (IMC) has shown promise related to impact on disease-related outcomes and quality of life. However, access to these models is limited within the Canadian healthcare systems and much remains to be learned about the most appropriate IMC team composition and roles. Although eHealth technologies have been leveraged to overcome some access challenges since COVID-19, more research is needed to understand how best to integrate eHealth modalities (i.e., video or telephone visits) into routine IBD care. Many individuals with IBD are satisfied with these eHealth modalities. However, not all disease assessment and monitoring can be achieved through virtual modalities. The need for access to person-centered, objective disease monitoring strategies, inclusive of point of care intestinal ultrasound, is more pressing than ever given pandemic-exacerbated restrictions in access to endoscopy and cross-sectional imaging. Supporting learning healthcare systems for IBD and research relating to the strategic use of innovative and integrative implementation strategies for evidence-based IBD care interventions are greatly needed. Data derived from this research will be essential to appropriately allocating scarce resources aimed at improving person-centred access to cost-effective IBD care.
Crohn's and Colitis Canada's 2023 Impact of Inflammatory Bowel Disease in Canada Report
Objective
To evaluate clinical outcomes, patterns of use, tolerance and nutritional outcomes of exclusive enteral nutrition (EEN) in adults with Crohn’s disease and to compare initiation in the inpatient compared with ambulatory care setting.
Design/method
Adults with Crohn’s disease who received EEN at a single centre over 2.5 years were identified and outcomes assessed via examination of patient records.
Results
EEN was initiated in 60 patients (23 as an outpatient) who had objective evidence of active disease. Of 49 in whom the goal was induction of remission, 28 completed EEN and 24 achieved clinical remission/response. Twenty-one withdrew prematurely, due to intolerance in 15 and disease factors in 6. Of 11 with a planned intervention, 6 fulfilled the goal of downstaging disease while two were intolerant. Completion of the prescribed therapy was associated with self-reported adherence to EEN and with improvements in disease activity scores and biochemical markers. Malnutrition halved (40% to 20%) and intentional weight loss (median 5.1 kg) was achieved in six obese patients. The major reason for intolerance was the inability to accept total avoidance of non-formula food. There were no differences in any outcomes according to the location of initiation of therapy.
Conclusion
Positive outcomes occur in 70% of adult patients with Crohn’s disease tolerating EEN and 81% in those who are able to completely adhere to EEN, without compromise of nutritional status. Similar success occurs when initiated as an inpatient or outpatient. Failure to tolerate EEN is the major hurdle to its use.
Introduction:
Inflammatory bowel disease (IBD) involves an abnormal immune response to healthy gut bacteria. When a person develops IBD, their susceptibility to anxiety and/or depression increases. The ACTforIBD programme, specifically designed for people with IBD and comorbid psychological distress, draws on acceptance and commitment therapy (ACT), which promotes acceptance of situations that cannot be solved such as persistent physical symptoms. There are no ACT trials for IBD using an active control group or a telemedicine approach, which is important to improve accessibility, particularly in the context of the ongoing COVID-19 pandemic. The ACTforIBD programme is administered online with a 4-hour therapist involvement per participant only; if successful it can be widely implemented to improve the well-being of many individuals with IBD.
Methods and analysis:
Our team have codesigned with consumers the ACTforIBD programme, an 8-week intervention of 1-hour sessions, with the first three sessions and the last session delivered one-to-one by a psychologist, and the other sessions self-directed online. This study aims to evaluate the feasibility and preliminary efficacy of ACTforIBD to reduce psychological distress in patients with IBD. Using a randomised controlled trial, 25 participants will be randomised to ACTforIBD, and 25 patients to an active control condition.
Ethics and dissemination:
This protocol has been approved by Deakin University Research Ethics Committee in September 2021 (Ref. 2021-263) and the New Zealand Central Health and Disability Ethics Committee in December 2021 (Ref. 2021 EXP 11384). The results of this research will be published in peer-reviewed journals and shared with various stakeholders, including community members, policy-makers and researchers, through local and international conferences.
Trial registration number:
ACTRN12621001316897.
LINKED CONTENT
This article is linked to Lövdahl et al papers. To view these articles, visit https://doi.org/10.1111/apt.16934 and https://doi.org/10.1111/apt.16985
Historically, dietitians played a minor part in the management of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis. Patients were commonly referred for consequences of uncontrolled disease, such as malnutrition and bowel obstruction risk. Today, dietitians are fundamental members of the multidisciplinary IBD team, from educating on the role of diet at diagnosis and throughout the lifespan of a patient with IBD to guiding primary induction therapy. This aspect is reflected in published guidelines for IBD management, which previously placed diet as only a minor factor, but now have diet-specific publications. This Review describes a four-step approach in a dietitian's assessment and management of diet in patients with IBD: (1) identifying and correcting nutritional gaps and dietary imbalances; (2) considering diet to treat active disease with the use of exclusive enteral nutrition (EEN) or emerging diets that could replace EEN; (3) using therapeutic diets to control existing complications of IBD, such as reduced fibre to prevent bowel obstruction in stricturing disease or a fermentable oligosaccharides, disaccharides, monosaccharides and polyols diet to manage co-existing functional gut symptoms; and (4) considering the role of diet in preventing IBD development in high-risk populations.
Introduction
Biologics are effective for the treatment of inflammatory bowel disease (IBD). However, unwarranted variation in processes and outcomes has been reported in the treatment of IBD. A care pathway for the treatment of IBD has the potential to reduce practice variation and improve outcomes. This study aims to compare the effect of a uniform care pathway for the treatment of patients with IBD with biologics to the current situation.
Methods and analysis
IBD Value is a longitudinal multicentre non-randomised parallel cluster trial with a baseline period. The study takes place in eight centres in the Netherlands. The baseline period will run for 12 months, after which the care pathway will be implemented in 6 of the 8 participating hospitals during the implementation phase of 3 months. Hereafter, the effect of the care pathway will be assessed for 12 months. Total study period is 27 months. The primary outcome is the effect of the care pathway on disease control (IBD-Control questionnaire). Secondary outcomes are the effect of the care pathway on the other outcomes of the International Consortium of Health Outcomes Measurement IBD standard set, health-related generic quality of life, patient experiences and degree of variation; cost effectiveness of the care pathway; and the variation between hospitals in the aforementioned outcomes in the baseline period. Outcomes will be measured every 6 months. The study started on 1 December 2020 and a minimum of 200 patients will be included.
Ethics and dissemination
The study was deemed not to be subject to Dutch law (WMO; Medical Research Involving Human Subjects Act) by the Medical Ethics Committee of the Erasmus MC, the Netherlands (registration number: MEC-2020–075) and a waiver was provided. Results will be disseminated through peer-reviewed journals and presented at (inter)national conferences.
Trial registration number
NL8276.
Introduction: A specialized inflammatory bowel disease (IBD) nurse is considered a valuable and cost-effective member of a multidisciplinary team, not all clinics responsible for IBD care employ such nurses. We evaluated IBD nurse resources, quality of care and cost effects on IBD patients care in a nationwide study in Finland.
Methods: A healthcare professional electronic survey was conducted in order to assess the impact of an IBD nurse on the quality of care. To study the cost effects, we obtained nationwide comprehensive data covering years between 2008 and 2016 from major administrative healthcare districts of Finland. Patients with a diagnosis of IBD (ICD-code K50 or K51) were identified from the data and their personal contacts and hospitalization were analyzed. The results were compared between healthcare districts with an IBD nurse and healthcare districts without an IBD nurse.
Results: Forty-nine physicians and 88 nurses responded to the survey. Of the physicians, 92% reported that an established IBD nurse had released physician’s resources. The most important IBD nurse contributions listed were patient support and follow-up (79–81% of the respondents).
Healthcare district, which had an established IBD nurse, produced more patient contacts. A larger proportion of the contacts was managed by the IBD nurse. Clinics with an IBD nurse reported less patient hospitalization (4–9% vs 11–19%, p < .001). Estimated annual cost savings while employing an IBD nurse may be significant.
Conclusion: The introduction of an IBD nurse led to better quality of care and potentially significant cost savings by reducing hospitalization rates and reallocating physician’s time resources.
Objectives
To audit the quality of care received by patients admitted for inflammatory bowel disease (IBD) across Australia against national IBD Standards.
Design
Retrospective cross‐sectional survey and clinical audit assessing organisational resources, clinical processes and outcome measures.
Setting
Australian hospitals.
Participants
Hospitals that care for inpatients with Crohn’s disease or ulcerative colitis.
Main outcome measures
Adherence to national IBD Standards and comparison of quality of care between hospitals with and without multidisciplinary IBD services.
Results
71 hospitals completed the organisational survey. Only one hospital had a complete multidisciplinary IBD service and 17 had a Partial IBD Service (IBD nurse, helpline and clinical lead). 1440 inpatient records were reviewed from 52 hospitals (mean age 37 years; 51% female, 53% Crohn’s disease), approximately 26% of IBD inpatient episodes over a 12‐month period in Australia. These patients were chronically unwell with high rates of anaemia (30%) and frequent readmissions (40% within two years). In general, care was inconsistent, and documentation poor. Hospitals with a Partial IBD Service performed better in many process and outcome measures: for example, 22% reduction in admissions via emergency departments and greater adherence to standards for safety monitoring of biologic (89% vs 59%) and immunosuppressive drugs (79% vs 55%) in those hospitals than those without.
Conclusions
Patients admitted to hospital suffering from IBD are young, chronically unwell, and are subject to substantial variations in clinical documentation and quality of care. Only one hospital met accepted Standards for multidisciplinary care; hospitals with even a minimal IBD service provided improved care.
This article is protected by copyright. All rights reserved.
Background/aims:
The quality of care in inflammatory bowel disease (IBD) has not been systematically estimated. The aim of this study was to investigate the current status of quality of IBD care in Asian countries.
Methods:
A questionnaire-based survey was conducted between March 2014 and May 2014. The questionnaire was adopted from "An adult inflammatory bowel disease physician performance measure set" developed by the American Gastroenterological Association. If the respondent executed the performance measure in more than 70% of patients, the measure was regarded as well performed.
Results:
A total of 353 medical doctors from Asia completed the survey (116 from Korea, 114 from China, 88 from Japan, 17 from Taiwan, 8 from Hong-Kong, 4 from India, 3 from Singapore, and 1 each from the Philippines, Malaysia and Indonesia). The delivery of performance measures, however, varied among countries. The documentation of IBD and tuberculosis screening before anti-tumor necrosis factor therapy were consistently performed well, while pneumococcal immunization and prophylaxis of venous thromboembolisms in hospitalized patients were performed less frequently in all countries. Physician awareness was positively associated with the delivery of performance measures. Variations were also noted in reasons for non-performance or low performance of quality measures, and the two primary reasons cited were consideration of the measure to be unimportant and lack of time.
Conclusions:
The delivery of performance measures varies among physicians in Asian countries, and reflects variations in the quality of care among the countries. This variation should be recognized to improve the quality of care in Asian countries.
Abstract
Background
The Scottish Government’s ambition is to ensure that health services are co-designed with the communities they serve. Crohn’s and Colitis UK and the Scottish Government acknowledged the need to review and update the current IBD care model. An online survey was conducted asking IBD patients about their experiences of the NHS care they receive. This survey was the first step of co-designing and developing a national strategy for IBD service improvement in Scotland.
Aim: To explore IBD patients’ experiences of current services and make recommendations for future service development.
Methods
This study was part of a wider cross-sectional on-line survey. Participants were patients with IBD across Scotland. 777 people with IBD took part in the survey. Thematic analysis of all data was conducted independently by two researchers.
Results
Three key themes emerged:
Quality of life: Participants highlighted the impact the disease has on quality of life and the desperate need for IBD services to address this more holistically.
IBD clinicians and access: Participants recognised the need for more IBD nurses and gastroenterologists along with better access to them. Those with a named IBD nurse reported to be more satisfied with their care.
An explicit IBD care pathway: Patients with IBD identified the need of making the IBD care pathway more explicit to service users.
Conclusions
Participants expressed the need for a more holistic approach to their IBD care. This includes integrating psychological, counselling and dietetic services into IBD care with better access to IBD clinicians and a more explicit IBD care pathway.
Background
Clinical activity and quality of life (QOL) indices assess disease activity in Crohn’s disease (CD) and ulcerative colitis (UC). However, a paucity of data exists on the validity of these indices according to disease characteristics.
Aims
To examine the correlation between QOL and clinical activity indices and endoscopic disease activity according to disease characteristics.
Methods
We used a prospective registry to identify CD and UC patients ≥18 years old with available information on Short Inflammatory Bowel Disease Questionnaire scores (SIBDQ), Harvey–Bradshaw Index (HBI) and simple endoscopic scores for CD (SES-CD), and Simple Clinical Colitis Activity Index (SCCAI) and Mayo endoscopic score for UC. We used Spearman rank correlations to calculate correlations between indices and Fisher transformation to compare correlations across disease characteristics.
Results
Among 282 CD patients, we observed poor correlation between clinical activity and QOL indices to SES-CD with no differences in correlation according to disease characteristics. Conversely, among 226 UC patients, clinical activity and QOL had good correlation to Mayo endoscopic score (r = 0.55 and −0.56, respectively) with better correlations observed with left-sided versus extensive colitis (r = 0.73 vs. 0.45, p = 0.005) and shorter duration of disease (r = 0.61 vs. 0.37, p = 0.04).
Conclusions
Our data suggest good correlation between SCCAI and endoscopic disease activity in UC, particularly in left-sided disease. Poor correlations between HBI or SIBDQ and SES-CD appear to be consistent across different disease phenotypes.
To study statements and recommendations on psychosocial issues as presented in international evidence-based guidelines on the management of inflammatory bowel diseases (IBD).
MEDLINE, guidelines International Network, National Guideline Clearing House and National Institute for Health and Care Excellence were searched from January 2006 to June 30, 2013 for evidence-based guidelines on the management of IBD.
The search yielded 364 hits. Thirteen guidelines were included in the review, of which three were prepared in Asia, eight in Europe and two in the United States. Eleven guidelines made statements and recommendations on psychosocial issues. The guidelines were concordant in that mental health disorders and stress do not contribute to the aetiology of IBD, but that they can influence its course. It was recommended that IBD-patients should be screened for psychological distress. If indicated, psychotherapy and/or psychopharmacological therapy should be recommended. IBD-centres should collaborate with mental health care specialists. Tobacco smoking patients with Crohn's disease should be advised to quit.
Patients and mental health specialists should be able to participate in future guideline groups to contribute to establishing recommendations on psychosocial issues in IBD. Future guidelines should acknowledge the presence of psychosocial problems in IBD-patients and encourage screening for psychological distress.
The use of patient reported outcome measures to support routine inflammatory bowel disease (IBD) care is not widespread and suggests that existing questionnaires lack relevance to day-to-day decisions or are too cumbersome to administer. We developed a simple, generic tool for capturing disease control from the patient's perspective to address these barriers.
Development based on literature review, patient focus groups/interviews and a steering group, defining a limited set of generic questions. The 'IBD-Control' questionnaire comprises 13 items plus a visual analogue scale (VAS) (0-100). Prospective validation involved baseline completion of IBD-Control, quality of life (QoL) questionnaire (UK-IBD-Q), EuroQol (EQ-5D), Hospital Anxiety and Depression Score; and clinician assessment (blinded to questionnaire; recording Harvey-Bradshaw Index or Simple Clinical Colitis Activity Index; Global Clinician Rating; treatment outcome).
299 patients returned baseline surveys (Crohn's disease, n=160; ulcerative colitis, n=139) and 138 attended for repeat visits. Completion time (mean; SD): 1 min 15 s; 25 s; Internal consistency: Cronbach's α for all 13 items (0.85); for subgroup of eight questions ('IBD-Control-8'; 0.86). Strong correlation between IBD-Control-8 and IBD-Control-VAS (r=0.81). Test-retest reliability (2 week repeat): intra-class correlation=0.97 for IBD-Control-8 and 0.96 for IBD-Control-VAS. Construct validity: Moderate-to-strong correlations between IBD-Control-8 and IBD-Control-VAS versus activity indices, UK-IBD-Q and EQ-5D (utility) with r values 0.52-0.86. Discriminant validity (mean instrument scores for remission, mild, moderate or severe): p<0.001 (analysis of variance (ANOVA)). Sensitivity to change: Effect sizes: 0.76-1.44.
The IBD-Control is a rapid, reliable, valid and sensitive instrument for measuring overall disease control from the patient's perspective. Unlike existing patient reported outcome measures, its simplicity, ease-of-use and generic applicability make it a candidate for supporting routine care.
To explore evidence on the links between patient experience and clinical safety and effectiveness outcomes.
Systematic review.
A wide range of settings within primary and secondary care including hospitals and primary care centres.
A wide range of demographic groups and age groups. PRIMARY AND SECONDARY OUTCOME MEASURES: A broad range of patient safety and clinical effectiveness outcomes including mortality, physical symptoms, length of stay and adherence to treatment.
This study, summarising evidence from 55 studies, indicates consistent positive associations between patient experience, patient safety and clinical effectiveness for a wide range of disease areas, settings, outcome measures and study designs. It demonstrates positive associations between patient experience and self-rated and objectively measured health outcomes; adherence to recommended clinical practice and medication; preventive care (such as health-promoting behaviour, use of screening services and immunisation); and resource use (such as hospitalisation, length of stay and primary-care visits). There is some evidence of positive associations between patient experience and measures of the technical quality of care and adverse events. Overall, it was more common to find positive associations between patient experience and patient safety and clinical effectiveness than no associations.
The data presented display that patient experience is positively associated with clinical effectiveness and patient safety, and support the case for the inclusion of patient experience as one of the central pillars of quality in healthcare. It supports the argument that the three dimensions of quality should be looked at as a group and not in isolation. Clinicians should resist sidelining patient experience as too subjective or mood-oriented, divorced from the 'real' clinical work of measuring safety and effectiveness.
Objectives:
To update previous systematic reviews of 12-month prevalence of complementary and alternative medicine (CAM) use by general populations; to explore trends in CAM use by national populations; to develop and apply a brief tool for assessing methodological quality of published CAM-use prevalence surveys.
Design:
Nine databases were searched for published studies from 1998 onwards. Studies prior to 1998 were identified from two previous systematic reviews. A six-item literature-based tool was devised to assess robustness and interpretability of CAM-use estimates.
Results:
Fifty-one reports from 49 surveys conducted in 15 countries met the inclusion criteria. We extracted 32 estimates of 12-month prevalence of use of any CAM (range 9.8-76%) and 33 estimates of 12-month prevalence of visits to CAM practitioners (range 1.8-48.7%). Quality of methodological reporting was variable; 30/51 survey reports (59%) met four or more of six quality criteria. Estimates of 12-month prevalence of any CAM use (excluding prayer) from surveys using consistent measurement methods showed remarkable stability in Australia (49%, 52%, 52%; 1993, 2000, 2004) and USA (36%, 38%; 2002, 2007).
Conclusions:
There was evidence of substantial CAM use in the 15 countries surveyed. Where national trends were discernable because of consistent measurement, there was no evidence to suggest a change in 12-month prevalence of CAM use since the previous systematic reviews were published in 2000. Periodic surveys are important to monitor population-level CAM use. Use of government-sponsored health surveys may enhance robustness of population-based prevalence estimates. Comparisons across countries could be improved by standardising approaches to data collection.
To date, there have been no population-based epidemiological studies published from Australia concerning the incidence of inflammatory bowel disease (IBD). Our hypothesis was that the incidence of IBD in Australia is at least as high as other industrialized countries, given similar genetic and environmental risk factors.
A prospective, population-based IBD incidence study was conducted between April 2007 and March 2008 in Greater Geelong, Victoria, Australia. According to 2006 Australian Census data, this comprises an at-risk population of 259,015. Cases were ascertained from multiple overlapping sources. All local general practitioners, gastroenterologists, surgeons, and pediatricians were contacted every 2 months to identify new IBD cases. The Royal Children's Hospital in Melbourne, local endoscopy and pathology centers were also searched to ensure completeness of case capture. Standard IBD case definitions were used with clinical, endoscopic, and histological criteria.
In all, 76 new cases of IBD were identified during the 1-year period. There were 45 cases of Crohn's disease, 29 of ulcerative colitis, and 2 of indeterminate colitis. The crude annual incidence rates for IBD overall, Crohn's disease, ulcerative colitis, and indeterminate colitis were 29.3 per 100,000 (95% confidence interval [CI] 23.5-36.7 per 100,000), 17.4 per 100,000, 11.2 per 100,000, and 0.8 per 100,000, respectively. When directly age-standardized to the World Health Organization standard population the overall IBD incidence rate was 29.6 per 100,000.
This is the first prospective, Australian population-based IBD incidence study. The incidence rates are among the highest reported in the literature of IBD.
The WHO European Office for Integrated Health Care Services in Barcelona is an integral part of the World Health Organizations' Regional Office for Europe. The main purpose of the Barcelona office is within the integration of services to encourage and facilitate changes in health care services in order to promote health and improve management and patient satisfaction by working for quality, accessibility, cost-effectiveness and participation. This position paper outlines the need for Integrated Care from a European perspective, provides a theoretical framework for the meaning of Integrated Care and its strategies and summarizes the programmes of the office that will support countries in the WHO European Region to improve health services.
Background:
Inflammatory bowel disease [IBD] includes chronic, disabling and progressive conditions that need a complex approach and management. Although several attempts have been made to standardize the care of IBD patients, no clear definitions of a global 'standard of care' are currently available.
Methods:
We performed a systematic review of the available literature, searching for all relevant data concerning three main domains of standards of quality of care in IBD patients: structure, process and outcomes. From the literature search, 2394 abstracts were retrieved, and 62 relevant papers were included in the final review.
Results:
Standards of quality of care in IBD include several aspects that can be summarized in three identified domains: structure, process and outcomes. The suggested structure of an IBD Unit includes a multi-disciplinary approach, effective referral processes, improved access using helplines, and departmental guidelines/pathways with identification of measurable quality indicators. Coordinated care models which incorporate a multi-disciplinary approach, structured clinical pathways or processes for the diagnosis, monitoring and treatment of IBD, fast-track recovery from IBD surgery, designated IBD clinics, virtual clinics and telemanagement are currently considered the main standards for process, although supporting data are limited. Several consensus statements on outcomes and quality indicators have been reported, focusing on outcomes in symptoms, function and quality of life restoration, survival and disease control, in addition to effective healthcare utilization.
Conclusions:
The results of this systematic review can provide the basis for general recommendations for standards of quality of care in IBD.
Background:
Fecal calprotectin (FC) is a widely used noninvasive marker of gut inflammation that is associated with endoscopic severity in Crohn's disease (CD). However, FC has been inconsistent in predicting postoperative recurrence of CD, and its utility in the postoperative setting remains unclear.
Materials and methods:
Blood and fecal samples were collected in consecutively recruited patients with CD who had undergone ileocolonic resection and required a colonoscopy to assess postoperative recurrence, as defined by the Rutgeerts score (RS).
Results:
A total of 86 patients were prospectively recruited at five centers. Overall, 49 (57%) had CD recurrence (RS≥i2). FC concentrations trended to increase with RS severity; FC median (interquartile range) was significantly higher in patients with endoscopic recurrence than those in endoscopic remission [172.5 (75-375) vs. 75 (36.5-180.5) μg/g, respectively]. The same occurred for C-reactive protein (CRP) [0.5 (0.1-0.95) vs. 0.1 (0.02-0.27)] mg/dl and the Harvey-Bradshaw index (HBI) [4 (2-7) vs. 1 (0-3.5)]. The three variables significantly correlated. The area under the curve to discriminate between patients in endoscopic remission and recurrence was 0.698 for FC, with 62 μg/g being the optimal cut-off point. This indicated FC would have 85.7% sensitivity and 45.9% specificity in detecting any recurrence, having positive predictive value and negative predictive value of 67.7 and 70.8%, respectively. Area under the curve for CRP and HBI were both 0.710. The combination of CRP and HBI provided a positive predictive value 95.7 and a diagnostic odds ratio of 30.8.
Conclusion:
FC is not better than CRP combined with HBI to predict endoscopic postoperative recurrence of CD.
Background
Quality of life (QoL) is commonly assessed in inflammatory bowel disease (IBD); the relationship of QoL within IBD states and relative to others has not been comprehensively evaluated. This systematic review, published across 2 papers, evaluates 5 key QoL comparisons. Part I, presented here, examines between-disease comparisons: (1) IBD/healthy(general) population and (2) IBD/other medically ill groups. Part II examines within-disease comparisons: (3) active/inactive disease, (4) ulcerative colitis/Crohn’s disease, and (5) change over time. Outcomes using generic vs IBD-specific QoL measures were also examined.
Methods
Adult and pediatric studies were identified through systematic searches of 7 databases from the 1940s (where available) to October 2015.
Results
Of 6173 abstracts identified, 466 were selected for final review based on controlled design and validated measurement; 30 unique studies (23 adult, 7 pediatric) addressed the between-disease comparisons. The pooled mean QoL scores were (1) lower in adult and pediatric IBD samples compared with healthy controls (n = 19), and for both mental and physical QoL, where measured; and (2) higher but not significant for those with IBD compared with various medically ill controls (n = 15). Findings were consistent across IBD-specific and generic QoL measures. Study quality was generally low to moderate. The most common measures of QoL were the disease-specific Inflammatory Bowel Disease Questionnaire and generic SF-36 (adults), and the generic PedsQL (children).
Conclusions
There was robust confirmation that QoL for individuals with IBD was poorer than for healthy individuals, for both adults and children. QoL in IBD may be better relative to some other gastrointestinal (GI) and non-GI medical conditions for children.
Objectives:
Depression is prevalent in inflammatory bowel disease (IBD) patients. The impact of depression on IBD is not well-studied. It is unknown how providers should assess depression.
Methods:
We used data from the Sinai-Helmsley Alliance for Research Excellence cohort, to assess methods of diagnosing depression and effects of baseline depression on disease activity at follow-up. A patient health questionnaire (PHQ-8) score ≥5 was consistent with mild depression. Relapse was defined as a modified Harvey-Bradshaw Index ≥5 or Simple Clinical Colitis Activity Index >2. We performed binomial regression to calculate adjusted risk ratios (RRs).
Results:
We included 2,798 Crohn's disease (CD) patients with 22-month mean follow-up and 1,516 ulcerative colitis (UC) patients with 24-month mean follow-up. A total of 64% of CD patients and 45% of UC patients were in remission at baseline. By self-report, 20% of CD and 14% of UC patients were depressed. By PHQ-8, 38% of CD and 32% of UC patients were depressed (P<0.01). Adjusted for sex, remission, and disease activity, CD patients with baseline depression were at an increased risk for relapse (RR: 2.3; 95% confidence interval (CI): 1.9-2.8), surgery, or hospitalization (RR: 1.3 95% CI: 1.1-1.6) at follow-up. UC patients with baseline depression were also at increased risk for relapse (RR: 1.3; 95% CI: 0.9-1.7), surgery, or hospitalization (RR: 1.3; 95% CI: 1.1-1.5) at follow-up.
Conclusions:
Baseline depression is associated with a higher risk for aggressive IBD at follow-up. A single question is not a sensitive method of assessing depression. Providers should consider administering the PHQ-8 to capture those at greater risk for aggressive disease.Am J Gastroenterol advance online publication, 14 November 2017; doi:10.1038/ajg.2017.423.
Background:
Half of patients with inflammatory bowel disease (IBD) require hospitalization. We sought to characterize inpatient quality indicators of care and outcomes during IBD-related hospitalizations at 4 major IBD referral centers in Canada.
Methods:
We conducted a multicenter retrospective cohort study of patients with IBD admitted from 2011 to 2013 to tertiary centers in Toronto, Montreal, Ottawa, and Vancouver. We assessed the following inpatient indicators of care: pharmacological venous thromboembolism (VTE) prophylaxis, Clostridium difficile testing, and medical rescue therapy for steroid-refractory ulcerative colitis (UC). We also evaluated rates of VTE, C. difficile infection, and IBD-related surgery.
Results:
There were 837 patients hospitalized for IBD (Crohn's disease, 59%; UC, 41%). The proportion of patients with IBD who received VTE prophylaxis and C. difficile testing were 77% and 82%, respectively, although these indicators varied significantly by center and admitting specialty. Patients admitted under surgeons were more likely than those admitted under gastroenterologists to receive VTE prophylaxis (84% versus 74%, P = 0.016) but less likely to be tested for C. difficile (41% versus 88%, P < 0.0001). The rate of VTE was the same for those who did and did not receive VTE prophylaxis (2.2 per 1000 hospital-days). Among the 14 VTE events, 79% had received prophylaxis, but only 36% within 24 hours of admission. Among steroid-refractory UC patients, 70% received rescue therapy within 7 days of steroid initiation. The proportion of patients with UC and CD who required respective bowel surgery was 18% and 20%, respectively.
Conclusions:
There are opportunities to optimize quality of care among hospitalized patients with IBD.
Background and aims:
Inflammatory bowel diseases (IBDs) are chronic gastrointestinal conditions requiring long-term outpatient follow-up, ideally by a dedicated, multidisciplinary team. In this team, the IBD nurse is the key point of access for education, advice, and support. We investigated the effect of the introduction of an IBD nurse on the quality of care delivered.
Methods:
In September 2014, an IBD nurse position was instituted in our tertiary referral center. All contacts and outcomes were prospectively recorded over a 12-month period using a logbook kept by the nurse.
Results:
Between September 2014 and August 2015, 1313 patient contacts were recorded (42% men, median age: 38 years, 72% Crohn's disease, 83% on immunosuppressive therapy). The contacts increased with time: Q1 (September-November 2014): 144, Q2: 322, Q3: 477, and Q4: 370. Most of the contacts were assigned to scheduling of follow-up (316/1420), start of new therapy (173/1420), therapy follow-up (313/1420), and providing disease information (227/1420). In addition, 134 patients contacted the IBD nurse for flare management and a smaller number for administrative support, psychosocial support, and questions about side effects. During the study period, 30 emergency room and 133 unscheduled outpatient visits could be avoided through the intervention of the IBD nurse. A faster access to procedures and other departments could be provided for 136 patients.
Conclusion:
The role of IBD nurses as the first point of contact and counseling is evident from a high volume of nurse-patient interactions. Avoidance of emergency room and unscheduled clinic visits are associated with these contacts.
Background and aims
Few studies have specifically examined models of care in IBD. This survey was designed to help gather information from health professionals working in IBD services on current care models, and their views on how to best reshape existing models for IBD care worldwide.
Methods
An online mixed-methods survey was conducted with health professionals caring for IBD patients. Recruitment was conducted using the snowballing technique, where members of professional networks of the investigators were invited to participate. Results of the survey were summarised using descriptive statistics.
Results
Of the 135 included respondents, 76 (56%) were female, with a median age of 44 (range: 23–69) years, 50% were GI physicians, 34% nurses, 8% psychologists, 4% dieticians, 2% surgeons, 1% psychiatrists, and 1% physiotherapists. Overall, 73 (54%) respondents considered their IBD service to apply the integrated model of care, and only 5% reported that they worked exclusively using the biomedical care (no recognition of psychosocial factors). The majority of respondents reported including mental health assessment in their standard IBD care (65%), 51% believed that an ideal IBD service should be managed in specialist led clinics, and 64% wanted the service to be publicly funded. Respondents pictured an ideal IBD service as easy-access fully multi-disciplinary, with a significant role for IBD nurses and routine psychological and nutritional assessment and care.
Conclusions
Health care professionals believe that an ideal IBD service should: be fully integrated, involve significant roles of nurses, psychologists and dieticians, run in specialist clinics, be easily accessible to patients and publicly funded.
Although inflammatory bowel diseases (IBD) significantly impact the patient's quality of life, no European-level data exists on patients' perspectives. The primary objective of this survey was to obtain an international perspective of the impact of IBD on patients' lives. Secondary objectives included obtaining a better understanding of the quality of care, access to care, and differences between countries, age groups, and sub-groups of IBD.
The survey questionnaire consisted of 52 questions in six categories. The survey was translated into ten languages, tested on volunteers, and promoted across 25 national IBD associations. Data was collected anonymously online, and participation was optional.
4670 patients completed the survey. Most respondents received a final diagnosis within a year from noticing first symptoms, but 67% had to visit emergency clinic at least once before diagnosis. 85% had been hospitalized in the last five years. 64% felt that gastroenterologists should ask more probing questions and 54% that they did not get to tell something potentially important to their physician. Most respondents experienced symptoms weekly also in remission. Most had been absent from work due to IBD and 24% had received unfair comments about their work performance. 45% felt that IBD had negatively affected their performance in educational settings.
The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.
Inflammatory bowel disease (IBD) management is increasingly concentrated in units with expertise in the condition leading to substantial improvement in outcomes. Such units often employ nurses with a specialised interest in IBD with enhancements in care reflecting in part the promotion of more efficient use of medical and hospital services by this role. However, the relative contributions of nurse specialist input, and the effect of medical staff with a sub-speciality interest in IBD are unclear although this has major implications for funding. Determining the value of IBD nurses by assessing the direct impact of an IBD nurse on reducing admissions and outpatient attendances has immediate cost benefits, but the long-term sustainability of these savings has not been previously investigated.
We therefore assessed the effect of an IBD nurse on patient outcomes in a tertiary hospital IBD Unit where the position has been established for 8 years by measuring the number of occasions of service (OOS) and outcomes of all interactions between the nurse and patients in a tertiary hospital IBD Unit over a 12-month period.
There were 4920 OOS recorded involving 566 patients. IBD nurse intervention led to avoidance of 27 hospital admissions (representing a saving of 171 occupied bed days), 32 Emergency Department presentations and 163 outpatient reviews. After deducting salary and on-costs related to the IBD nurse there was a net direct saving to the hospital of AUD $136,535.
IBD nurse positions provide sustained direct cost reductions to health services via reducing hospital attendances. This is additional to benefits that accrue through better patient knowledge, earlier presentation and increased compliance.
Psychiatric co-morbidity, in particular major depression and anxiety, is common in patients with Crohn's disease (CD) and ulcerative colitis (UC). Prior studies examining this may be confounded by the co-existence of functional bowel symptoms. Limited data exist examining an association between depression or anxiety and disease-specific endpoints such as bowel surgery.
To examine the frequency of depression and anxiety (prior to surgery or hospitalisation) in a large multi-institution electronic medical record (EMR)-based cohort of CD and UC patients; to define the independent effect of psychiatric co-morbidity on risk of subsequent surgery or hospitalisation in CD and UC, and to identify the effects of depression and anxiety on healthcare utilisation in our cohort.
Using a multi-institution cohort of patients with CD and UC, we identified those who also had co-existing psychiatric co-morbidity (major depressive disorder or generalised anxiety). After excluding those diagnosed with such co-morbidity for the first time following surgery, we used multivariate logistic regression to examine the independent effect of psychiatric co-morbidity on IBD-related surgery and hospitalisation. To account for confounding by disease severity, we adjusted for a propensity score estimating likelihood of psychiatric co-morbidity influenced by severity of disease in our models.
A total of 5405 CD and 5429 UC patients were included in this study; one-fifth had either major depressive disorder or generalised anxiety. In multivariate analysis, adjusting for potential confounders and the propensity score, presence of mood or anxiety co-morbidity was associated with a 28% increase in risk of surgery in CD (OR: 1.28, 95% CI: 1.03–1.57), but not UC (OR: 1.01, 95% CI: 0.80–1.28). Psychiatric co-morbidity was associated with increased healthcare utilisation.
Depressive disorder or generalised anxiety is associated with a modestly increased risk of surgery in patients with Crohn's disease. Interventions addressing this may improve patient outcomes.
Aim:
To develop a patient-based Simple Clinical Colitis Activity Index (P-SCCAI) of ulcerative colitis (UC) activity and to compare it with the clinician-based SCCAI, C-reactive protein (CRP) and Physician's Global Assessment (PGA) of UC activity. Monitoring UC activity may give patients disease control and prevent unnecessary examinations.
Methods:
Consecutive UC patients randomly completed the P-SCCAI either before or after consultation. Gastroenterologists assessed patients' UC activity on the same day. Overall agreement between SCCAI and P-SCCAI was calculated with Spearman's Rho and Mann-Whitney U test. Agreement regarding active disease versus remission and agreement at domain level were calculated by percent agreement and kappa (κ).
Results:
149 (response rate 84.7%) UC patients participated. P-SCCAI and SCCAI showed a large correlation (rs=0.79). The medians (IQR) of the P-SCCAI (3.78;0-15) tended to be higher than those of the SCCAI (2.86;0-13), although this difference did not reach statistical significance (z=1.71| p=0.088). In 77% of the cases the difference between clinicians' and patients' scores was not clinically different (i.e.≤2). Percentage agreement between clinicians and patients, judging UC as active or in remission, was 87%, rs=0.66, κ=0.66, indicating a substantial agreement. In general patients tended to report more physical symptoms than clinicians. C-Reactive protein (CRP) was found to have a significant association with both P-SCCAI and SCCAI (κ=0.32, κ=0.39 respectively) as was PGA (κ=0.73 for both indices).
Conclusions:
The P-SCCAI is a promising tool given its substantial agreement with the SCCAI and its feasibility. Therefore, P-SCCAI can complement SCCAI in clinical care and research.
Background and aims: The aim of the present study was to analyze the satisfaction of health care professionals who attend patients with inflammatory bowel disease (IBD) and to determine the variables more related with satisfaction/dissatisfaction.
Methods: Cross-sectional, self-administered written 15-item questionnaire was evaluated using a Likert scale, completed by Spanish gastroenterologists and nurse practitioners specialized in IBD patient care.
Results: A total of 202 surveys, 133 physicians (65.8%) and 69 nurses (34.2%) were conducted. Global scoring of satisfaction was 54.0 for physicians and 64.2 for nurses (p < 0.001). In both groups the highest scores were achieved in those items related to their professional careers and management of personal and professional lives as well as those that refer to their interdisciplinary relationship with other medical units, management of patients within the hospital setting and finally communication with the patient. The items that attained the lowest score included those related to the length and staff available for the medical consult, work environment and the balance among health care provider needs for contribution, recognition and fulfillment. With regard to the variables involved with satisfaction, the results show that those physicians that only took care of IBD patients achieved a higher degree of satisfaction. This could be related with the fulfillment of their own professional expectations.
Conclusions: The level of satisfaction of health care professionals that take care of IBD patients is low and may impact on patient care. Therefore, new strategies to increase the degree of satisfaction of IBD health care providers should be implemented.
Inflammatory bowel disease (IBD) is a chronic condition, yet the model of care is often reactive. We sought to examine whether a formal IBD service (IBDS) reduced inpatient healthcare utilisation or lowered costs for inpatient care.
With protocols, routine nurse phone follow-up a help-line, more proactive care was delivered, with many symptoms and concerns dealt with prior to routine presentation. Over two five month periods before (2007/8) and after (2009/10) introducing a formal IBDS two discrete cohorts of admitted IBD patients were identified at a single centre. Each patient was assigned five contemporaneously admitted, age and gender matched controls. Inpatient healthcare utilisation was compared between patients and controls and disease-specific factors amongst the two IBD cohorts.
The initial audit captured 102 admitted IBD patients (510 controls, median age 44 years, 57% female); the second audit 95 patients (475 controls, median age 46 years, 45.3% female). In 2009/10, the number of admissions was lower in IBD patients than in controls (mean 1.53+/-1.03 vs. 2.54+/-2.35; p<0.0001). This contrasts with the first audit, where IBD patients had more admissions than controls. Following IBDS introduction, the mean total cost of inpatient care was lower for IBD patients than controls (US$12,857.48 (US$15,236.79) vs. US$ 30,467.78 (US$ 53,760.20), p=0.005). In addition, patients known to a specialist gastroenterologist (GE) and the IBD Service tended to have the lowest mean number of admissions (GE and IBDS 1.14 (+/-0.36) vs. no GE/IBDS 1.64 (+/-1.25)).
Healthcare utilisation and disease burden in IBD decreased significantly since introducing an IBDS. These data suggest that proactive management improved outcomes. Contact with a gastroenterologist and IBDS seemed to give best results.
We aimed to determine whether any of the nonsteroidal anti-inflammatory drugs (NSAIDs), antibiotics, infections, and stress trigger symptomatic flares of inflammatory bowel diseases (IBDs).
Participants drawn from a population-based IBD research registry were surveyed every 3 months for 1 year. They simultaneously tracked the use of NSAIDs, antibiotics, infections, major life events, mood, and perceived stress. Social networks, childhood socioeconomic status, and smoking were assessed at baseline. Disease flare was identified using the Manitoba Inflammatory Bowel Disease Index, a validated disease activity index. Across any two consecutive survey periods, participants were categorized as having a flare (inactive/active), having no flare (inactive/inactive), or remaining active (active/active). Potential triggers were evaluated for the first 3-month period to determine predictive rather than concurrent relationships. Data from only one pair of 3-month periods from an individual were analyzed.
A total of 704 participants completed the baseline survey; 552 (78.3%) returned all 5 surveys. In all, 174 participants who had a flare were compared with 209 who had no flare. Perceived stress, negative affect (mood), and major life events were the only trigger variables significantly associated with flares. There were no differences between those who flared and those who did not, in the use of NSAIDs, antibiotics, or in the presence of infections. Multivariate logistic regression analyses indicated that only high-perceived stress (adjusted odds ratio=2.40 (1.35, 4.26)) was associated with an increased risk of flare.
This study adds to the growing evidence that psychological factors contribute to IBD symptom flares. There was no support for differential rates of use of NSAIDS, antibiotics, or for the occurrence of (non-enteric) infections related to IBD flares.
A single-item indicator of disease activity over an extended period of time, the Manitoba Inflammatory Bowel Disease Index (MIBDI), is introduced and compared against several standard measures for assessing activity in patients with Crohn's disease (CD) and ulcerative colitis (UC).
Participants enrolled in the Manitoba IBD Cohort Study, a population-based longitudinal cohort study (N=353), were assessed semiannually by survey, clinical interview, and blood sample during a 2-year period. The MIBDI is based on patient self-reports of symptom persistence for the previous 6 months, using a 6-level response format.
The MIBDI had good sensitivity compared with the Harvey-Bradshaw Index (HB; 0.88), Powell-Tuck Index (PT; 0.84), and Inflammatory Bowel Disease Questionnaire (IBDQ; 0.89), which was maintained at two subsequent annual measurements. Test-retest reliability was also strong (Spearman's r=0.81). Discriminant function analyses identified common discriminating variables of active disease for CD and UC that included HB, PT, and IBDQ subscales of bowel and systemic symptoms, prolonged symptom severity (e.g., abdominal and joint pain, tiredness, diarrhea), and recent persistent pain related to IBD. Unique discriminators included weight problems (CD) and blood in stool (UC).
A single-item, patient-defined disease activity measure, the MIBDI, showed a high degree of sensitivity for classifying individuals with regard to disease status over time compared with the existing disease activity measures, and strong convergent validity with expected proxy measures of disease. These relationships remained consistent over time. Thus, the MIBDI shows promise as a valid, brief tool for measuring disease activity over an extended period.
There is a perception of increasing and widespread use of alternative medicine for inflammatory bowel disease (IBD). We assessed the usage of alternative therapies among patients with IBD, whether there were similar or contrasting variables that were predictive of such use, and contrasted the use in four different centers in North America and Europe.
Patients in four IBD centers completed a self-administered questionnaire regarding alternative medicine. The centers were in Cork, Los Angeles, Stockholm, and Winnipeg. Patient demographics, the use of 18 types of alternative medicine, and attitudes towards alternative and conventional medicine were compared. A multiple logistic regression analysis was used.
Fifty-one percent of 289 patients used some form of alternative medicine. The percentages of use by site were Cork = 31%, Los Angeles = 68%, Stockholm = 32%, and Winnipeg = 57%. The six most commonly used therapies in descending order were: exercise (28%), prayer (18%), counseling (13%), massage (11%), chiropractic (11%), and relaxation (10%). Only 7% used acupuncture or homeopathy and 5% used herbal medicine. The highest odds ratios (confidence intervals [CIs]) for using any form of alternative medicine were associated with: being single 3.1 (1.7-5.7), Los Angeles patient 4.4 (2.3-8.3), Winnipeg patient 2.7 (1.3-5.9), and an increase of alternative medicine use of 2.7% for every M.D. visit (CI, 2-11%/visit). The patient age, gender, disease diagnosis, or duration of disease were not predictive of any type of alternative medicine use. Regarding attitudes, respondents from Cork were most favorable toward alternative medicine use and least favorable toward conventional medicine. Based on attitudes, subjects were more likely to use alternative medicine if they were not satisfied with conventional therapy, viewed hospitals as dangerous places, thought that alternative medicine practitioners should have a role in hospitals, and felt their medical situation was hopeless.
Fifty-one percent of respondents used some form of alternative medicine. The use was greater among the North American patients than the European ones. Respondents were more likely to use alternative medicine if they were single, in a higher income bracket, and an urban dweller.
The purpose of this study was to develop and test a core set of questions to measure patients' experiences of in-patient care. Questions were selected from the bank of items developed for use in in-patient surveys undertaken by the Picker Institute for the purposes of assessing the quality of care.
The data reported here come from surveys of patients who had attended acute care hospitals in five countries: the United Kingdom, Germany, Sweden, Switzerland, and the USA. Questionnaires were mailed to patients' homes within 1 month of discharge, either to all patients, or to a random sample, discharged during a specified period.
A total of 62 925 questionnaires were returned, with response rates of 65% (UK), 74% (Germany), 63% (Sweden), 52% (Switzerland), and 46% (USA).
Fifteen items were selected from the bank of questions included in the Picker in-patient questionnaires. These items have a high degree of face validity and when summed to an index they show a high degree of construct validity and internal reliability consistency.
Fifteen items derived from the longer form Picker in-patient survey have been found to provide a meaningful picture of patient experiences of health care, and constitute the 15-item Picker Patient Experience Questionnaire. These questions comprise a core set that should be measured in all in-patient facility surveys. The Picker Patient Experience Questionnaire represents a step forward in the measurement of patient experience as it provides a core set of questions around which further optional modules may be added. Scores are easy to interpret and actionable.
This small set of questions could be incorporated into in-patient surveys in different settings, enabling the comparison of hospital performance and the establishment of national or international benchmarks.
Crohn's & Colitis Australia
- Misc-Ci
- Melbourne