Effectiveness of interventions to enhance shared decision-making in wound care: A systematic review.

AIMS: To explore the effectiveness of interventions to enhance patient participation in shared decision-making in wound care and tissue viability. BACKGROUND: Caring for people living with a wound is complex due to interaction between wound healing, symptoms, psychological wellbeing and treatment effectiveness. To respond to this complexity, there has been recent emphasis on the importance of delivering patient centred wound care and shared decision-making to personalise health care. However, little is known about the effectiveness of existing interventions to support shared decision-making in wound care. DESIGN: Systematic review of interventional studies to enhance shared decision-making in wound care or tissue viability. This was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines 2020. METHODS: Interventional primary research studies published in English up to January 2023 were included. Screening, data extraction and quality appraisal were undertaken independently by two authors. DATA SOURCES: Medline, EMBASE, Cochrane Central Register of Controlled Trails (trials database), CINAHL, British Nursing Index (BNI), WorldCat (thesis database), Scopus and registries of ongoing studies (ISRCTN registry and clinicaltrials.gov). RESULTS: 1063 abstracts were screened, and eight full-text studies included. Findings indicate, interventions to support shared decision-making are positively received. Goal or need setting components may assist knowledge transfer between patient and clinician, and could lower short term decisional conflict. However, generally findings within this study had very low certainty due to the inconsistencies in outcomes reported, and the variation and complexity of single and multiple interventions used. CONCLUSIONS: Future research on shared decision-making interventions in wound care should include the involvement of stakeholders and programme theory to underpin the interventions developed to consider the complexity of interventions. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Patients setting out their needs or goals and exploring patient questions are important and should be considered in clinical care. REGISTRATION: The review protocol was prospectively registered (PROSPERO database: CRD42023389820). NO PATIENT OR PUBLIC CONTRIBUTION: Not applicable as this is a systematic review.

What influences the inclusion of skin tone diversity when teaching skin assessment? Findings from a survey.

BACKGROUND: Understanding the variances in visual skin changes across all skin tones is important in clinical care. However, the experiences of those teaching skin assessment to pre- and post-registrant nurses are unknown. AIMS: To determine the barriers and facilitators experienced in teaching skin assessment across a range of skin tones to pre- and post-registrant nurses. METHODS: A cross-sectional, mixed-methods online survey was undertaken throughout February and March 2023 based on the Theoretical Domains Framework of behaviour change. FINDINGS: In this self-selecting sample, most participants were aware of why it was important to include all skin tones when teaching skin assessment and were professionally motivated to include this in their practice. However, resources and support are needed to overcome an unconscious bias in teaching skin tone diversity, resulting in a lack of availability of good quality photographs and educator confidence in their own skills. Educators not considering skin tone when selecting patient cases and relying on people with dark skin tones to highlight where practice is not inclusive may also lead to insufficient exposure for students. CONCLUSION: There is some awareness of the importance of including diverse skin tones in teaching, but further education and resources are needed.

Group-based PFMT programme for preventing and/or treating UI in pregnant women: protocol of a randomized controlled feasibility study.

BACKGROUND: Urinary incontinence (UI) is a prevalent health problem in women worldwide. Many women experience UI during pregnancy. The National Institute for Health and Care Excellence (NICE) recommended pelvic floor muscle training (PFMT) as the first-line conservative treatment for UI. However, it is not widely implemented due to the limited number of healthcare trainers. Group-based PFMT has been used with older women and a limited number of maternity studies. But the effectiveness of the group-based PFMT needs to be investigated because the overall quality of the studies is low. Therefore, this study aims to assess the feasibility of delivering a group-based PFMT programme for pregnant women in Nanjing city. METHODS: This feasibility study will be conducted in Nanjing Maternity and Child Health Care Hospital in China, using a mixed methods design to investigate the feasibility and acceptability of delivering group-based PFMT to pregnant women. Pregnant women with or without the symptoms of UI will be included. This study aims to recruit 48 pregnant women with 24 in each arm. Participants will receive either the group-based PFMT delivered by a midwife or usual antenatal care which includes only verbal instruction on PFMT. The study will assess the completion rates, acceptability of outcome measures, recruitment and retention rate and calculate an appropriate sample size for a future study. DISCUSSION: The results of this study will inform the design and implementation of a definitive randomized clinical trial to explore the effectiveness of the intervention. TRIAL REGISTRATION: ClinicalTrials.gov, NCT05242809.

The prevalence, associated factors, and impact of urinary incontinence in pregnant and postpartum women in Nanjing, China: A cross-sectional study.

Objective: Urinary incontinence (UI) is highly prevalent in antenatal and postnatal women while the prevalence of UI varied largely from 3.84% to 38.65%. This study was to assess the prevalence of UI, the associated factors, and the impact of UI on daily life in pregnant and postpartum women in Nanjing, China. Methods: The prevalence of UI and the impact of UI on life were assessed by the validated Chinese version of International Consultation on Incontinence Questionnaire-urinary incontinence-short form and the validated Chinese version of urinary incontinence quality of life. The associated factors were estimated by using logistic regression analysis. Results: UI affected 37.80% of pregnant women and 16.41% of postpartum women of the study population. Among the pregnant participants, the prevalence rates of stress UI, urge UI, and mixed UI were 25.77%, 4.47%, and 7.10%, respectively. Among the postpartum women, the prevalence rates of stress UI, urge UI, and mixed UI were 11.15%, 1.92%, and 2.69%, respectively. In both pregnant women and postpartum women, vaginal delivery had significantly increased the odds of reporting UI (p=0.007, p=0.003, respectively). The impact of UI on daily life was significantly greater in postpartum women compared to pregnant women especially in social embarrassment (p=0.000). Conclusion: The prevalence rates of UI were high in pregnant women in Nanjing, China. Vaginal delivery significantly increased odds of reporting UI. UI has a great impact on pregnant and postpartum women's life, especially in social embarrassment.

"It is like a pet in a way": The self-management experiences of people with cystic fibrosis diabetes.

BACKGROUND: Cystic fibrosis diabetes (CFD) is a very common co-morbidity affecting the lives of people with cystic fibrosis. Surprisingly, minimal research has been undertaken to understand the experiences of people with CFD and how they self-mange this condition. METHODS: Using interpretative phenomenological analysis, the present study examined the self-management experiences of people with CFD. In-depth semi-structure interviews were conducted with eight people who had CFD. RESULTS: The following three superordinate themes were identified: forming a relationship with CFD, balancing the CFD self-management triad, and the unmet need for information and support. CONCLUSIONS: The findings suggest that the management of CFD is challenging and, although people with CFD experience many adaptation and management processes similar to people with type 1 diabetes, they struggle with the additional complexity of balancing CF and CFD. The provision of appropriate education, support and person-centred care needs to be addressed.

Effectiveness of Fluid and Caffeine Modifications on Symptoms in Adults With Overactive Bladder: A Systematic Review.

Overactive bladder (OAB) is prevalent in men and women and negatively impacts physical and psychological health. Fluid and caffeine intake modifications, which are lifestyle modification interventions, are simple methods to manage OAB. However, studies that synthesized both interventions and found scientific evidence are scarce. This review aimed to synthesize scientific evidence on whether fluid and caffeine intake modifications are effective for OAB symptoms. PubMed, CINAHL (Cumulative Index for Nursing and Allied Health Literature), Embase, Scopus, the Cochrane Library, KoreaMed, and RISS (Research Information Sharing Service) were used to search for studies and 8 studies were included. The Cochrane risk of bias tool (RoB 2.0) and ROBINS-I (Risk Of Bias In Non-randomized Studies - of Interventions) were used to assess the quality of selected studies. Due to the heterogeneous outcome variables, a meta-analysis was not conducted. Among the 8 included, 7 studies were randomized controlled trials and one was a quasi-experimental study. Four studies assessed urgency. Caffeine reduction was statistically effective for urgency symptoms, but increasing fluid intake was not. Frequency was assessed in 5 studies, which showed decreasing caffeine and fluid intake was effective in treating the symptoms. Urinary incontinence episodes were assessed in 6 studies, and nocturia in 2. Restricting caffeine intake was effective in treating these 2 symptoms, but restricting both caffeine and fluid intake was not. Quality of life (QoL) was examined in 5 studies, and modifying fluid and caffeine intake significantly improved QoL in 2. Although there were limited studies, our review provides scientific evidence that fluid and caffeine intake modification effectively manages OAB symptoms. Further research should examine acceptability and sustainability of interventions in the long-term and enable meta-analysis.

The experience of living with and managing cystic fibrosis related diabetes: a qualitative review.

Background: Improved survival rates for people with cystic fibrosis have led to increased rates of co-morbidity, of which diabetes is the most common. Cystic fibrosis related diabetes affects 19% of adolescents and up to 50% of adults, although little is known about their experiences of this co-morbidity. Aims: To investigate the experiences of living with and managing cystic fibrosis related diabetes among adolescents and adults. Methods: Systematic review and thematic analysis of qualitative evidence. Results: Six studies, rated good quality, were included in the review and four main themes emerged from the data: knowledge and understanding; emotional and social impact; balancing both conditions; acceptance and adjustment. Although the main themes reflect adolescent and adult experiences, there were subtle variations in their sub-themes. Participants' overriding story was of journeying towards acceptance and integration of cystic fibrosis related diabetes into their lives. This included their unpreparedness for the likely onset of cystic fibrosis related diabetes and their struggles to balance the competing demands of living with and managing cystic fibrosis and diabetes. Conclusions: The diagnosis of cystic fibrosis related diabetes and its incorporation into daily life is challenging for many people with cystic fibrosis. Review findings indicate opportunities for cystic fibrosis related diabetes interventions pre-diagnosis, at diagnosis, and during ongoing management, which need integrating into routine cystic fibrosis care.

A Qualitative Study of Health Care Professionals' Views on Bowel Care in Multiple Sclerosis: Whose Job Is It Anyway?

Background: Bowel dysfunction, including constipation and fecal incontinence, is prevalent in individuals with multiple sclerosis (MS), adversely affecting quality of life and increasing caregiver burden. How health care professionals (HCPs) identify, assess, and manage people with MS with bowel dysfunction is understudied. This study explored how HCPs think about, assess, and manage bowel dysfunction in individuals with MS. Methods: Semistructured interviews were conducted with 18 HCPs from different professional disciplines and clinical specialties recruited from UK National Health Service primary, secondary, and tertiary care services using purposive and chain referral sampling through professional networks. One participant worked for a bladder and bowel charity. Data were analyzed using thematic analysis. Results: Views differed regarding responsibilities for providing bowel care. Participants thought individuals with MS should notify HCPs of bowel symptoms and take responsibility for self-management where possible, with family caregivers required to help with bowel care. Although people with MS were often referred to bladder and bowel specialists when a crisis point was reached, earlier referral was called for by these HCPs. There were variations in assessment processes, treatment options offered, and service provision. Participants thought HCPs needed more education on bowel dysfunction, bowel care should take a high priority, and evidence-based clinical guidelines and referral pathways would improve service delivery. Conclusions: The HCPs caring for individuals with MS see many with bowel dysfunction, and there is variation in care and service provision; HCPs require more education, evidence-based clinical guidelines, and referral pathways to improve case finding, assessment, and management of these symptoms for individuals with MS.

The effectiveness of group-based pelvic floor muscle training in preventing and treating urinary incontinence for antenatal and postnatal women: a systematic review.

INTRODUCTION AND HYPOTHESIS: Urinary incontinence (UI) is prevalent in antenatal and postnatal women. Pelvic floor muscle training (PFMT) is the first-line treatment for UI. Group-based PFMT provides a way for professionals to deliver this intervention to more women who need to prevent and/or treat UI. This review aims to (1) assess the effectiveness of group-based PFMT in preventing and treating UI in antenatal and postnatal women and (2) explore the characteristics of group-based intervention and factors which had an impact on the success of group-based PFMT. METHODS: Randomized controlled trials (RCTs) were included in this review. A comprehensive search was conducted in PubMed, Embase, Medline, PsycINFO, Maternity and Infant Care Database, CINAHL, Chinese Biomedical Literature Database, China National Knowledge Infrastructure, VIP Database and Wanfang Database. The overall quality was assessed using Grading of Recommendations, Assessment, Development and Evaluations (GRADE). RCTs which included pregnant and/or postnatal women with or without UI investigating the effectiveness of group-based PFMT were included. RESULTS: Five RCTs were included in this review. The overall quality of the results of the included studies was low. Delivering group-based PFMT during pregnancy significantly reduced the prevalence of UI in both the pregnant period [risk ratio (RR) = 0.67, 95% confidence interval (CI) 0.57 to 0.80, P < 0.00001] and the postnatal period [RR = 0.66, 95% CI 0.52 to 0.84, P = 0.0008]. Only one RCT delivered group-based PFMT during the postnatal period. CONCLUSION: Evidence of weak quality supports the effectiveness of undertaking group-based PFMT in pregnancy to prevent UI during pregnancy and the postnatal period. No evidence showed the effectiveness of undertaking group-based PFMT in the postnatal period.

Moisture-associated skin damage: use of a skin protectant containing manuka honey.

The skin is the largest organ in the body, providing an effective barrier against excessive fluid loss and invasion from bacteria, but the barrier function of the skin can be lost when it is damaged by prolonged contact with moisture. Moisture-associated skin damage can be caused by prolonged exposure to perspiration, urine or faeces, wound exudate or stomal output. Prevention and treatment of moisture-associated skin damage involves application of skin protectants, but there is a wide range of these products available to nursing staff, and clinical decision making is hampered by a lack of robust comparative evidence. Medihoney® Barrier Cream may be used for a number of indications related to moisture-associated skin damage, including incontinence-associated dermatitis. The use of Medihoney Barrier Cream has been shown to lower pruritis complaints associated with intertrigo, and promotes patient comfort.

Development and Psychometric Properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A New Tool to Measure Disease-Specific Distress.

BACKGROUND: Inflammatory bowel disease (IBD) imposes a heavy psychosocial burden, with many patients reporting anxiety, depression, and distress. In diseases such as diabetes, disease-specific distress is associated with concordance with treatments and disease control. IBD distress, distinct from anxiety and depression, is evident in people with IBD. We aimed to develop a questionnaire for assessing IBD-specific distress, validate this against a gold standard distress measure for diabetes, and demonstrate the difference between anxiety, depression, and distress. METHODS: The 94-item IBD Distress Scale (IBD-DS) was developed through secondary analysis of 3 qualitative data sets from previous IBD studies. Items were then refined through cognitive interviews in 2 stages (n = 15, n = 3). Three supplementary unscored questions were added to enable patients to identify their overall level of distress, their perceived level of disease activity, and their 3 most distressing issues. Subsequently, the 55-item IBD Distress Scale was subjected to test-retest. Two hundred seventy-five people received the test draft IBD-DS, and 168 responded (60.4%). Of these, 136 (82%) returned the retest draft of IBD-DS 3 weeks later. After analysis, further item reduction was informed by response rates, kappa values, and correlation coefficients, and test-retest was repeated. One hundred fifty-four people received the test final 28-item IBD-DS, and 123 people responded (58.8%). Of these, 95 (77%) returned the retest final IBD-DS. RESULTS: The 94 items were reduced to 28 items. Good intraclass correlation (ICC) was found between test-retest scores on 72 complete data sets with unchanged disease status (ICC, 0.92; 95% confidence interval, 0.88-0.95). Cronbach's alpha was 0.95, indicating excellent internal consistency. Factor analysis indicated scoring the items as a single domain (score range, 0-168). CONCLUSION: The final IBD-DS performs well and offers a tool for assessing IBD-specific distress.

Experience of Nurses Caring for Patients With Neurogenic Bowel Dysfunction: A Qualitative Study.

PURPOSE: The purpose of this study was to explore the experience and perceptions of nurses providing bowel care to patients after spinal cord injury. DESIGN: Qualitative study using thematic analysis of semistructured interviews. SUBJECTS AND SETTING: Eleven RNs who provided bowel care to patients following spinal cord injury and were deemed competent to do so by their employer were invited to participate. The study setting was a large, London NHS Trust providing acute hospital care to a population of around 1 million people. METHODS: Semistructured interviews were digitally audio-recorded and transcribed verbatim. Analysis of data was undertaken using Braun and Clark's 6 stages of thematic analysis. RESULTS: Four main themes emerged: (1) unpleasantness of task; (2) perceived patient experience; (3) motivation and avoidance; and (4) barriers to care. There was stoic acceptance of the unpleasant nature of bowel care for the nurse, but unpleasantness for patients was not as readily acknowledged. Perceived patient experience ranged from descriptions of positive aspects of comfort and continence to negative aspects of embarrassment and discomfort. Nurses were motivated by the medical need for bowel care but often saw it as low priority due to the unpleasant nature and displayed avoidance tactics. The barriers concerned inadequate training, the taboo nature of bowel care, and potential sexual interpretations of care. CONCLUSION: Nurses described bowel care as unpleasant but accepted its physiologic need and importance. The standardization of bowel care training and increasing the numbers of nurses trained in bowel care may decrease stigma surrounding provision of care. Study findings suggest that male nurses' experience may differ from female nurses' experience, but this result requires further investigation.

'It is what it is': mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions.

BACKGROUND: Informal carers (carers) support palliative patients to live at home. Most palliative patients require bladder and bowel care (B&BC) at some point, but there is limited evidence about carers providing B&BC and how best to support them. AIM: To explore carers' experiences of providing B&BC to life-limited young adults. METHODS: Interpretative phenomenological analysis of five interviews with purposively selected carers. RESULTS: One overarching theme, 'It is what it is', and three superordinate themes ('Whatever my daughter needs', 'Mum knows best', and 'Coping with caring') emerged. While B&BC could be challenging at times, it was not a major concern. Instead it engendered closeness and opportunities for carers to provide better care than they felt professionals could. CONCLUSIONS: This study informs how professionals should understand the support carers offer. Professionals should ensure that carer/patient dyads who wish to manage B&BC are supported to do so, and that their support needs are regularly assessed.

"It's just horrible": a qualitative study of patients' and carers' experiences of bowel dysfunction in multiple sclerosis.

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand 'what it is like' to live with bowel dysfunction and the impact this has on people with MS and carers. Using exploratory qualitative methods, 47 semi-structured interviews were conducted with participants recruited from specialist hospital clinics and community sources using purposive and chain-referral sampling. Data were analysed using a pragmatic inductive-deductive method. Participants identified multiple psychological, physical and social impacts of bowel dysfunction. Health care professional support ranged from empathy and appropriate onward referral, to lack of interest or not referring to appropriate services. Participants want bowel issues to be discussed more openly, with clinicians instigating a discussion early after MS diagnosis and repeating enquiries regularly. Bowel dysfunction impacts on the lives of people with MS and their carers; their experience with care services is often unsatisfactory. Understanding patient and carer preferences about the management of bowel dysfunction can inform clinical care and referral pathways.

Hand decontamination in clinical practice: a review of the evidence.

Hand decontamination is known to significantly reduce the spread of hospital-acquired infections but, despite a wealth of guidelines and education campaigns, evidence suggests that many healthcare workers are non-compliant with hand decontamination. The behaviours that prevent hand decontamination are complex. Studies look at attitudes towards dirt, disgust, self-protective hand washing and familiarity with patients. Self-protection behaviours manifest themselves in washing hands more often after certain tasks. Professional issues are also reported to have an impact on hand decontamination, mainly lack of time, heavy workloads, understaffing and frequency of admissions to the clinical area. Further research needs to be undertaken to include comparison between self-reported studies and observational studies, as it has been shown that healthcare workers may rationalise their behaviour and that self-reporting can be unreliable.

The Glasgow Coma Scale in adults: doing it right.

After 40 years, the Glasgow Coma Scale (GCS) is the resource of choice for assessing the level of consciousness in patients with neurological conditions. Clinicians' ability to monitor patients' conditions, identify deterioration and make clinical decisions depends on their ability to carry out GCS assessments, so it is vital that they understand it. This article explores how best to use the GCS in clinical practice and examines some of the factors that can affect the accuracy of assessments. The article also explains the difference between peripheral and central stimuli.

Interventions for preventing and treating incontinence-associated dermatitis in adults.

BACKGROUND: Incontinence-associated dermatitis (IAD) is one of the most common skin problems in adults who are incontinent for urine, stool, or both. In practice, products and procedures are the same for both prevention and treatment of IAD. OBJECTIVES: The objective of this review was to assess the effectiveness of various products and procedures to preventand treat incontinence-associated dermatitis in adults. SEARCH METHODS: We searched the Cochrane Incontinence Group Specialised Trials Register, which contains trials identified from the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, MEDLINE In-Process, MEDLINE Epub Ahead of Print, CINAHL, ClinicalTrials.gov, WHO ICTRP and handsearching of journals and conference proceedings (searched 28 September 2016). Additionally we searched other electronic databases: CENTRAL(2015, Issue 4), MEDLINE (January 1946 to May Week 3 2015), MEDLINE In-Process (inception to 26 May 2015), CINAHL(December 1981 to 28 May 2015), Web of Science (WoS; inception to 28 May 2015) and handsearched conference proceedings (to June 2015) and the reference lists of relevant articles, and contacted authors and experts in the field. SELECTION CRITERIA: We selected randomised controlled trials (RCTs) and quasi-RCTs, performed in any healthcare setting, with included participants over 18 years of age, with or without IAD. We included trials comparing the (cost) effectiveness of topical skin care products such as skin cleansers, moisturisers, and skin protectants of different compositions and skin care procedures aiming to prevent and treat IAD. DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles, abstracts and full-texts, extracted data, and assessed the risk of bias of the included trials. MAIN RESULTS: We included 13 trials with 1295 participants in a qualitative synthesis. Participants were incontinent for urine, stool, or both, and were residents in a nursing home or were hospitalised.Eleven trials had a small sample size and short follow-up periods. .The overall risk of bias in the included studies was high. The data were not suitable for meta-analysis due to heterogeneity in participant population, skin care products, skin care procedures, outcomes, and measurement tools.Nine trials compared different topical skin care products, including a combination of products. Two trials tested a structured skin care procedure. One trial compared topical skin care products alongside frequencies of application. One trial compared frequencies of application of topical skin care products.We found evidence in two trials, being of low and moderate quality, that soap and water performed poorly in the prevention and treatment of IAD (primary outcomes of this review). The first trial indicated that the use of a skin cleanser might be more effective than the use of soap and water (risk ratio (RR) 0.39, 95% confidence interval (CI) 0.17 to 0.87; low quality evidence). The second trial indicated that a structured skin care procedure, being a washcloth with cleansing, moisturising, and protecting properties, might be more effective than soap and water (RR 0.31, 95% CI 0.12 to 0.79; moderate quality evidence). Findings from the other trials, all being of low to very low quality, suggest that applying a leave-on product (moisturiser, skin protectant, or a combination) might be more effective than not applying a leave-on product. No trial reported on the third primary outcome 'number of participants not satisfied with treatment' or on adverse effects. AUTHORS' CONCLUSIONS: Little evidence, of very low to moderate quality, exists on the effects of interventions for preventing and treating IAD in adults. Soap and water performed poorly in the prevention and treatment of IAD. Application of leave-on products (moisturisers, skin protectants, or a combination) and avoiding soap seems to be more effective than withholding these products. The performance of leave-on products depends on the combination of ingredients, the overall formulation and the usage (e.g. amount applied). High quality confirmatory trials using standardised, and comparable prevention and treatment regimens in different settings/regions are required. Furthermore, to increase the comparability of trial results, we recommend the development of a core outcome set, including validated measurement tools. The evidence in this review is current up to 28 September 2016.

Identifying disease-specific distress in patients with inflammatory bowel disease.

OBJECTIVES: Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon. METHODS: This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals. RESULTS: Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress. DISCUSSION: Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.