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Objective: This study aimed to evaluate if a new Mental health IN DiabeteS Optimal Health Program (MINDS OHP) compared with usual care in adults with Type 1 and Type 2 diabetes would improve psychosocial outcomes including self-efficacy and quality of life. Design and Main Outcome Measures This initial randomised controlled trial evaluated MINDS OHP compared with usual care. Participants were recruited through outpatient clinics and community organisations. The intervention group received nine sessions with assessments over twelve months. Primary outcomes were self-efficacy and quality of life. Secondary outcomes included diabetes distress and anxiety. Results: There were 51 participants in the control group (mean age = 52) and 55 in the intervention group (mean age = 55). There were significant main effects of time in general self-efficacy, diabetes distress, diabetes self-efficacy, and illness perceptions, however no significant between-group differences in primary or secondary outcomes. Post-hoc analyses revealed MINDS OHP improved diabetes self-efficacy for participants with mild to severe depression and anxiety, with a small effect. Conclusion: Initial evaluation found MINDS OHP was associated with improved diabetes self-efficacy for adults with diabetes, for people with mild to severe levels of distress, with small effect. Further research is required to explore whether this disease-specific, collaborative care-focused intervention benefits the mental health of people with diabetes.

The aim of this longitudinal study was to examine changes in COVID-19 and illness-related perceptions, gastrointestinal symptoms, coping, catastrophising, psychological distress, and QoL during the COVID-19 pandemic. A total of 831 adults with a gastrointestinal condition completed an online questionnaire at baseline (May—October 2020). Of those, 270 (32.5%) participants (85.2% female, mean age = 47.3 years) provided follow-up data (March—May 2021). Repeated-measures multiple analysis of variance and a cross-lagged panel model were used to test the study hypotheses. Gastrointestinal symptoms and COVID-19 perceptions at follow-up were strongly predicted by their baseline values, while illness perceptions were predicted by baseline gastrointestinal symptoms. Cross-lagged relationships indicated a reciprocal relationship between gastrointestinal symptoms and psychological distress. Moreover, gastrointestinal symptoms had substantial predictive utility, strongly predicting future gastrointestinal symptoms, and to a lesser extent, more negative illness perceptions, greater psychological distress, and greater use of adaptive coping strategies across time.

Background The aim of the study was to examine the impact of diagnostic status (i.e., having a clinical diagnosis of irritable bowel syndrome (IBS) or being symptomatic but undiagnosed on quality of life (QoL)). We also examined whether the relationships between QoL and variables such as symptom frequency, pain catastrophizing, visceral sensitivity, and psychological distress are moderated by diagnostic status. Methods The online sample comprised 404 participants (Mage = 33.59, SD = 12.43), of which 98 had been diagnosed with IBS and 306 were symptomatic but undiagnosed. Results The findings suggest that even after adjusting for symptom frequency, those diagnosed with IBS experience poorer QoL, relative to those without a diagnosis. Moreover, there was evidence that the relationship between specific QoL domains (namely, sex, food avoidance, and health worry) and psychological variables (namely, pain catastrophizing, and depression) was moderated by diagnostic status. Conclusion The results indicate that diagnostic status in relation to IBS has psychological implications for QoL outcomes distinct from symptom frequency, age, and gender. This highlights a substantial gap in our current understanding of how a diagnosis of IBS can impact the lives of those suffering from IBS symptomology and calls into question the intended purpose of diagnosis.

This study aimed to explore the association between perceived isolation and symptoms of distress in people with GI disorders at the time of the pandemic; and to examine factors which moderate this relationship. This online cross-sectional survey was advertised in May–September 2020 via patient organisations and associated social media. Overall, 831 people (82% female, mean age 49 years) from 27 countries participated. A significant relationship between social isolation and psychological distress was noted (r = .525, p

A robust scale capable of assessing illness-related experiential avoidance (EA) in any given medical condition is currency lacking. Further, there is no available measure that assesses EA related to illness behaviours, i.e., actions and/or reactions in relation to feeling unwell that have the purpose of defining one’s state of health and obtaining physical or emotional relief from perceived or actual illness. This study intends to fill this significant gap by presenting the development and psychometric test of a measure of EA related to illness behaviour, the Illness Behaviour Avoidance Scale (IBAS). A total of 370 Portuguese adults with chronic illness participated in the study. The structure and validity of the IBAS was tested through an Exploratory Factor Analysis (EFA; n = 185), a Confirmatory Factor Analysis (CFA; n = 185), and reliability analyses. The IBAS presented a 7-item unifactorial structure, with good global (CMIN/DF = 2.08; CFI = 0.97; TLI = 0.94; SRMR = 0.04; RMSEA = 0.08, p = 0.139) and local adjustments (SRWs 0.56–0.73; SMCs 0.31–0.53). It also presented a good internal consistency (with αs = 0.82), and construct and discriminant validity. The IBAS appears to be a significant improvement from the use of previous EA measures in illness contexts. This scale can provide a measurement of whether the behavioural response to any given condition is a manifestation of EA.

Background and Aims: Post traumatic stress disorder (PTSD) is common in individuals with inflammatory bowel diseases (IBD). Living with a medical condition has been linked to the development of PTSD and to adversely impact patient outcomes. The aim of this study is to extend the common sense model (CSM) and evaluate trauma as an additional psychosocial process in the relationship between IBD symptoms and quality of life (QoL). Method: A cross-sectional online study exploring trauma and IBD was performed. Results: 68 (32.2%) of the sample met the criteria for PTSD. Of this trauma group, 37 (54.4%) reported IBD related trauma, 21 (30.9%) reported non-IBD related trauma and 10 (14.7%) did not identify the trauma type. A structural equation model (SEM) based upon the CSM was found to have an excellent fit (χ2 (3)=1.10, p=0.35, RMSEA=0.02, SRMR=0.02, CFI=1.00, GFI=0.99). Results showed that trauma symptoms partially mediated the relationship between illness perceptions and QoL and fully mediated the relationship between maladaptive coping and QoL. Conclusion: This study extended the CSM and found that trauma symptoms functioned as a mediator between IBD activity and QoL. These results highlight the need for a holistic approach including psychological assessment and intervention in IBD.

BACKGROUND Gastrointestinal ultrasound is increasingly used for point of care assessment of inflammatory bowel disease. AIMS To explore the utility of gastrointestinal ultrasound as a point-of-care assessment tool from the perspectives of the clinician and patient. METHODS A prospective, observational cohort study was designed utilising routine outpatient consultations. Adult patients with inflammatory bowel disease were allocated to receive gastrointestinal ultrasound or not at the discretion of their treating clinician. Patients completed self-reported session experience questionnaires at study entry, immediately after their consultation, and 4 and 16 weeks later. Clinicians reported disease activity status, therapeutic decisions and clinical management. RESULTS Of 259 participants, mean age 40 (SD: 13) years, 54% male, 73 (28%) underwent ultrasound. Time since diagnosis was 9.2 (8.5) years (ultrasound) and 11.3 (9.2) years (no ultrasound). Immediately after ultrasound, patients who self-reported active disease reported better understanding of all aspects of their disease and disease symptoms were more confident in their ability to make informed decisions about managing their disease and had improved knowledge domain scores compared with the non-ultrasound group (all P

This study, using the database from the Rome Foundation Global Epidemiology Survey, aimed to assess the differences in quality of life overall, and by age and sex, across individual disorders of gut-brain interaction (DGBI), gastrointestinal anatomical region(s), and number of overlapping DGBI.Data were collected via the internet in 26 countries, using the Rome IV diagnostic questionnaire and a supplemental questionnaire including the Patient-Reported Outcomes Measurement Information Systems Global-10 quality of life measure. Factorial ANOVAs were used to explore physical and mental quality of life, adjusting for multiple comparisons.Among the 54,127 respondents, quality of life deteriorated significantly with increasing number of overlapping DGBI, with respondents reporting two or more DGBI having significantly poorer quality of life than those with only one DGBI or those without any DGBI. Males with DGBI reported better quality of life than females, and those aged ≥65 years old reported better quality of life than those65 years. Age, sex, number of overlapping DGBI, somatization, anxiety, depression, and functional experiences (concern, embarrassment, or stress associated with bowel functioning) relating to DGBI, were significant predictors of poorer physical and mental quality of life.This study is the most comprehensive assessment of quality of life to date in adults living with a DGBI. It provides a representative picture of DGBI impact on adults in the global adult population, and highlights the significant detrimental impact of living with a DGBI on quality of life.

Parcopresis is a condition where individuals have trouble (or inability) defecating in restrooms due to the perceived scrutiny of others. The aim of the current research was to identify the prevalence of public toilet avoidance and explore if an extended socio-cognitive model of parcopresis predicts toilet avoidance. Seven-hundred and fourteen university students (73.2% female; mean age = 28.79 years) met criteria to participate and completed a series of questionnaires and ten restroom vignettes. On average 80.00% (gender adjusted 82.54%) of the participants chose to use an available toilet, while 16.78% (gender adjusted 14.44%) avoided a toilet for non-contamination fears. A further 3.22% (gender adjusted 3.01%) participants on average avoided using a toilet due to fears of contamination. Males were significantly more likely to use and not avoid toilets than females across all vignettes. A structural equation model (SEM) indicated the data supported the proposed model well (χ2 p value = .185, CMIN/df = 1.359, CFI = .998, TLI = .995, RMSEA = .023, SRMR = .0207) with significant direct relationships being found between: dysfunctional attitudes influencing fear of positive and negative evaluation and fear of social reprisal, and fear of positive and negative evaluation influencing fear of social reprisal and social anxiety symptoms. Social anxiety symptoms had a direct significant influence on parcopresis symptoms, while in turn parcopresis symptoms had a direct significant influence on toilet avoidance. The current study provides evidence that toilet avoidance is underpinned by social anxiety processes and affects at least 14.44% of university students.

AimThe current study evaluated the feasibility and preliminary efficacy of a psychosocial intervention, the Kidney Optimal Health Program, in reducing symptoms of depression and anxiety in individuals with advanced chronic kidney disease.MethodsPatients with stage 4 or 5 chronic kidney disease were randomized to either a nine‐session psychosocial intervention programme or usual care. Feasibility was assessed through recruitment and retention rates and programme acceptability. Participants completed assessments of depression, anxiety and psychosocial health at baseline and at 3‐, 6‐ and 12‐month follow‐up. A repeated‐measures analysis of variance was used to compare groups on outcomes over time.ResultsOne hundred and twenty‐eight patients were screened for eligibility; 84 consented to participant and were randomized to receive the intervention (N = 42) or usual care (N = 42). 27 (32.1%) participants withdrew prior to baseline assessment. Of those who completed the baseline assessment (N = 57), trial retention was high (75.4% at 3‐month, 80.7% at 6‐month and 70.2% at 12‐month follow‐up). Participants reported high levels of programme acceptability. The patients who completed the intervention (N = 17) demonstrated significantly decreased depression at 12‐month follow‐up compared to the usual care group (N = 13).ConclusionThe results support the feasibility of the Kidney Optimal Health Program intervention in recruitment, retention and programme acceptability with an improved screening protocol. Preliminary support is provided for improvement in depressive symptoms in patients with advanced chronic kidney disease. Further investigation through a fully powered randomized controlled trial is warranted.

Psychological distress is often observed in patients with gastrointestinal illness. To date, there has been limited research conducted to assess the prevalence and impact of post-traumatic stress disorder (PTSD) in gastrointestinal cohorts. The aim of this systematic review is to review the evidence for the prevalence of PTSD in gastrointestinal cohorts versus comparator groups (healthy controls and chronic illness groups), predictive factors associated with the development and management of PTSD and the impact on patient outcomes. Adult studies were identified through systematic searches of eight databases (MEDLINE, Embase, Emcare, PsycINFO, Ovid Nursing, CINAHL, Informit Health Collection, and Cochrane Library) in February 2020. The overall pooled prevalence rate of PTSD in GI cohorts was 36%; however, the prevalence rate in non-veteran-specific gastrointestinal cohorts of 18% across all GI classification groups is likely to be the more representative rate. The non-gastrointestinal chronic illness cohort PTSD prevalence rate was 11%. Predictors identified in the development of post-traumatic stress in gastrointestinal cohorts include: female gender, poor social support, life adversity, subjective pain, and dietary choices. Post-traumatic stress was found to exacerbate gastrointestinal symptoms in a Crohn’s Disease sample, whereby disease exacerbation was four times in those who met the criteria for probable PTSD. Post-traumatic stress symptoms affect around one in five individuals (non-veteran status) with a gastrointestinal condition. Further research is needed to understand the psychological and biological mechanisms by which PTSD increases the risk of developing and exacerbating gastrointestinal symptoms.

While trauma is recognized as being common in Inflammatory Bowel Disease (IBD) cohorts, limited research has explored how trauma impacts the lived experience of IBD. The aim of this study was to develop an understanding of how trauma impacts the experience of living with IBD and its subsequent management. An interpretative phenomenological analysis with thematic analysis was conducted. Eighteen adults with IBD participated in this qualitative research study. Key themes identified included: (1) Trauma was associated with the journey of IBD; (2) the impact of IBD and trauma, and (3) coping strategies. Pre-existing non-IBD trauma was prevalent, with several participants reporting links between traumatic events and their IBD diagnosis. Experiences of IBD trauma were described by participants across all stages of their illness journey. The study can assist healthcare professionals to better understand the experience of living with IBD and trauma and the factors that can contribute to traumatic responses.

BACKGROUND: Inflammatory bowel disease is associated with poor quality of life. The aim of the cross-sectional study was to extend the common sense model to explore the impact of inflammatory bowel disease activity on quality of life and the potential mediating roles of illness perceptions, visceral sensitivity, coping styles, acceptance, and psychological distress. METHODS: A total of 141 inflammatory bowel disease patients (86 with Crohn’s disease and 55 with ulcerative colitis; 74 males, 65 females, and 2 gender non-specific, mean age 40.43 years) from 2 metropolitan hospital inflammatory bowel disease outpatient clinics participated. Measures included disease activity (Crohn’s Disease Activity Index, Simple Clinical Colitis Activity Index), illness perceptions (Brief Illness Perceptions Questionnaire), visceral sensitivity (Visceral Sensitivity Index), coping styles (Brief Coping Operations Preference Enquiry), acceptance (Acceptance and Action Questionnaire-II), psychological distress (Depression, Anxiety, and Stress Scale), and European Health Interview Survey-Quality of Life (EUROHIS-QoL). RESULTS: A structural equation model of the extended common sense model was found to have a good fit (χ(2)(10) = 10.07, P = .43, root mean square error of approximation = 0.01, standardized root mean residual = 0.04, comparative index fit = 1.00, Tucker–Lewis index = 1.00, goodness-of-fit = 0.98). After controlling for irritable bowel syndrome diagnosis, the impact of disease activity on quality of life was statistically mediated by illness perceptions, maladaptive coping styles, and psychological distress. In addition, visceral sensitivity bordered on influencing the impact of disease activity and illness perceptions on quality of life through psychological distress. CONCLUSIONS: This study demonstrates that together with illness perceptions and coping styles, visceral sensitivity plays an important role in an individual’s adaption to living with inflammatory bowel disease.

Background Although several studies have reported the impact of fears relating to COVID-19 on several chronic illness populations, there are few studies focused on gastrointestinal (GI) conditions. The aim was to compare how fear of COVID-19 is manifested in people living with Inflammatory Bowel Disease (IBD) compared to other GI conditions; and, how fear of COVID-19 is manifested across different demographic backgrounds (employment status, education level and country of residence) among IBD respondents using a large international sample. Methods Participants with a GI condition (≥18years of age) were recruited from 22 countries through a web-based questionnaire. Demographic, clinical, and psychosocial information was collected in relation to the COVID-19 pandemic. An adaptation of the scale developed for IBD by Trindade & Ferreira (2020) measuring fear of COVID-19 (FoC; original items 1–9) and GI specific fear of COVID-19 (GI-FoC; new items 10–14) was used. Results In 831 participants (312 IBD), there were no significant differences in FoC between IBD and other GI conditions; whilst significant increases in GI-FoC were found in IBD respondents (mean [SD]: 13.5 [5.5] vs. 10.9 [5.0], p being at increased risk of getting COVID-19; and being at increased risk of death if they got COVID-19. Among IBD respondents, persons on sick leave had significantly more general FoC than those who were employed, and significantly more GI-FoC compared to the employed or respondents outside of the labour market (Figures 1a and 1b). Persons living in a rural setting had significantly more general FoC and GI-FoC (Figures 2a and 2b). These persons were fearful of contracting COVID-19, having contact with someone with respiratory symptoms, having contact with healthcare professionals, going outside, meeting people, having contact with someone who was in contact with an infected person, having contact with someone infected with COVID-19, and that their IBD means being at increased risk of death if they got COVID-19. There were no differences in general FoC and GI-FoC according to educational background. However, respondents with higher education were less afraid of dying from COVID-19. Conclusion Respondents with IBD are more afraid of the consequences of COVID-19 due to their disease compared to other GI diseases; especially, persons on sick leave or persons living in a rural setting. Persons with higher education were less afraid of dying from COVID-19. These findings should be taken into consideration to personalise the support health-care providers can offer in mitigating fear related to COVID-19 in IBD patients.

Background Quality of care in inflammatory bowel disease (IBD) has received much attention internationally; however, the available surveys focus on health professionals rather than patients. Aims To assess the experiences of healthcare for people living with 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 were 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 dietician 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%). One 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.

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, This large Australian survey shows that 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 inflammatory bowel disease to improve their outcomes.

Background and Purpose: Stroke can have a devastating impact on the mental and physical health of stroke survivors and their carers. We aimed to evaluate the effectiveness of a novel psychosocial intervention designed to improve health outcomes in both groups.Methods: We conducted a randomized controlled trial of a personalized psychosocial intervention (eight 1-hour weekly sessions plus one booster) compared to usual care for adult stroke survivors and carers. Participants recruited from hospital services and community referrals completed questionnaires at baseline, 3, 6, and 12 months. Primary outcomes were quality of life and self-efficacy; secondary outcomes were depressive and anxiety symptoms, coping, illness perception, work and social adjustment, carer strain, and carer satisfaction. Mixed-effect model repeated measures analysis between groups and across time was conducted.Results: Of the 173 participants recruited (89 stroke survivors; 84 carers), a total of 137 participants – 73 stroke survivors (intervention n = 42; usual care n = 31) and 64 carers (intervention n = 35; usual care n = 29) – underwent analysis up to 12 months. No statistically significant differences were found in the primary outcomes between groups over time, though a significant improvement in carer satisfaction was found at 6 months in the intervention group compared to the usual care group.Conclusion: A personalized psychosocial intervention resulted in a significant improvement in carer satisfaction at 6 months but in no other outcomes. A lack of available services and barriers to social engagement may have impeded the effectiveness of this intervention.

The aim of this study was to examine whether the extended bivalent fear of evaluation model (extended BFOE) of Social Anxiety Disorder (SAD) could be used to explain bladder and bowel incontinence anxiety (BBIA). It was hypothesised that the relationship between dysfunctional attitudes (DAs) and BBIA would be mediated by fear of negative evaluation (FNE), fear of positive evaluation (FPE), concerns of social reprisal (CSR), and disqualification of positive social outcomes (DPSO). Three-hundred-and-seventeen undergraduate students (76.7% female; mean age = 31.07 years) completed a cross-sectional online study. A structural equation model (SEM) supported the proposed model (χ2p value = .131, CMIN/df = 1.560, CFI = .996, TLI = .990, RMSEA = .042, SRMR = .0245) with significant relationships found between DAs and FNE (p

The aim of this cross-sectional study was to use an extended common sense model (CSM) to evaluate the impact of fear of COVID-19 on quality of life (QoL) in an international inflammatory bowel disease cohort. An online study involving 319 adults (75% female, mean (SD) 14.06 (15.57) years of symptoms) completed the Gastrointestinal Symptom Rating Scale, Brief Illness Perceptions Questionnaire, Fear of Contracting COVID-19 Scale, Brief-COPE, Depression, Anxiety and Stress Scale, and the EUROHIS-QOL. The extended CSM had an excellent fit (χ

Objective The COVID-19 pandemic has had a significant impact on mental health across the globe. People living with a chronic gastrointestinal (GI) disorder might be particularly at risk of mental health complications given higher rates of comorbid anxiety and depression compared to the healthy population. As GI disorders affect up to 40% of the population worldwide, this international collaborative study seeks to evaluate the extent of the impact of the COVID-19 pandemic on GI symptoms specifically and more generally on the well-being of those living with chronic GI conditions. Methods A longitudinal survey with three time points (baseline, 6-month, and 12-month) will be conducted online. Adult participants with GI disorders from multiple countries will be recruited via patient associations, social media advertising, utilizing snowball sampling. Participants will be invited to complete a battery of questionnaires including demographic and health parameters, and measures of gastrointestinal symptoms, fear of COVID-19, perceived impact of COVID-19, illness perceptions, coping, depression, anxiety, stress, catastrophizing, and quality of life, using validated measures where available. Statistical analyses will include univariate descriptive models, multivariate models utilizing regression, mediation, and moderation, and latent growth models. Conclusions This project may present novel information to the field of psychogastroenterology and may provide crucial information regarding the areas of impact for individuals with GI disorders during and following the pandemic. Further, this information can guide healthcare providers and patient associations on how to target support related to the pandemic mental health sequelae for these patients.

IntroductionEndometriosis is a debilitating chronic inflammatory condition highly burdensome to the healthcare system. The present trial will establish the efficacy of (1) yoga and (2) cognitive–behavioural therapy (CBT), above (3) education, on quality of life, biopsychosocial outcomes and cost-effectiveness.Methods and analysisThis study is a parallel randomised controlled trial. Participants will be randomly allocated to yoga, CBT or education. Participants will be English-speaking adults, have a diagnosis of endometriosis by a qualified physician, with pain for at least 6 months, and access to internet. Participants will attend 8 weekly group CBT sessions of 120 min; or 8 weekly group yoga sessions of 60 min; or receive weekly educational handouts on endometriosis. The primary outcome measure is quality of life. The analysis will include mixed-effects analysis of variance and linear models, cost–utility analysis from a societal and health system perspective and qualitative thematic analysis.Ethics and disseminationEnrolment in the study is voluntary and participants can withdraw at any time. Participants will be given the option to discuss the study with their next of kin/treating physician. Findings will be disseminated via publications, conferences and briefs to professional organisations. The University’s media team will also be used to further disseminate via lay person articles and media releases.Trial registration numberACTRN12620000756921p; Pre-results.

IntroductionNon-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 analysisHealth 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 disseminationEthics 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.

Background Coeliac disease is a chronic gastrointestinal condition associated with an increased risk of psychiatric comorbidity, and diminished quality of life. Ongoing gastrointestinal symptomatology is frequently reported post-diagnosis, despite undertaking a gluten-free diet. Purpose To examine the role of psychosocial factors in mediating the relationship between gastrointestinal symptoms and quality of life, using a cross-sectional structural equation modelling mediation analysis guided by the Common-Sense Model. Methods 1697 adults with coeliac disease (83.1% female, mean age = 55.79, SD = 14.98 years) completed an online questionnaire. Measures included gluten-free diet adherence, gastrointestinal symptoms, illness perceptions, coping, gastrointestinal-specific anxiety, pain catastrophising, psychological flexibility, psychological distress, and quality of life. Results A structural equation model was developed explaining 50.6% of the variation in quality of life and demonstrating good fit (χ2 (2) = 8.54, p = .014, χ2/N = 4.27, RMSEA = 0.04, SRMR = 0.01, CFI = 0.999, TLI = 0.98, GFI = 0.999). Gastrointestinal symptoms directly affected quality of life, and indirectly, via negative illness perceptions, maladaptive coping, pain catastrophising, and psychological distress. Conclusion Psychosocial processes may affect adjustment in coeliac disease by mediating the relationship between gastrointestinal symptoms and quality of life. Individuals living with coeliac disease may benefit from interventions targeting maladaptive psychosocial factors.

Irritable bowel syndrome (IBS) is a disorder of gut‐brain interaction (DGBI), formerly classified as a Functional Gut Disorder (Lacy et al., 2016). DGBIs are characterised by gastrointestinal sympt...

To evaluate the efficacy of Mindfulness-Based Stress Reduction (MBSR) in improving pain and physical function following total joint arthroplasty (TJA).Two-group, parallel-group, randomised controlled trial, conducted between September 2012 and May 2017.Single centre study conducted at a University-affiliated, tertiary hospital.People with arthritis scheduled for TJA, with a well-being score40 (Short Form-12 Survey) were randomly allocated to a pre-surgery eight-week MBSR program or treatment as usual (TAU).Self-reported joint pain and function at 12 months post-surgery, assessed using the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). Secondary outcomes were knee stiffness and global improvement (WOMAC); physical and psychological well-being (Veterans RAND 12-item Health Survey); self-efficacy (Arthritis Self-Efficacy Scale); and mindfulness (5-Factor Mindfulness Questionnaire).127 participants were randomised; 65 to MBSR and 62 to TAU, of which 45 participants allocated to the intervention and 56 participants allocated to usual care proceeded to surgery and 100 (99%) completed primary outcome measures. Greater improvements in knee pain (mean difference, -10.3 points, 95% CI -19.0 to -1.6; P = 0.021) and function (mean difference, -10.2 points, 95% CI -19.2 to -1.3; P = 0.025) at 12 months post-surgery were observed in the MBSR group compared to the TAU group. A between group difference in global scores (-9.5 points, 95% CI -17.9 to -1.1; P = 0.027) was also observed. No other differences in secondary outcomes were observed.MBSR improves post-surgery pain and function in people with psychological distress undergoing TJA. Further research is required to examine potential barriers to broader implementation and uptake.

The current research investigates the development and validation of the Bladder and Bowel Incontinence Phobia Severity Scale (BBIPSS). Over two studies, two independent samples consisting of university students and respondents from the general public were used to validate the scale (study 1n= 226; study 2n= 377). A 15-item, two-factor model was confirmed in study 2 where strong construct (convergent and divergent) validity was demonstrated. The BBIPSS did not display significant correlations with openness and gender (divergent validity) and displayed significant correlations with depression, anxiety, and stress scores (DASS), alongside paruresis and parcopresis scores (Shy Bladder and Bowel Scale [SBBS]; convergent validity) and the Bowel and Bladder-Control Anxiety Scale [BoBCAtS]. The BBIPSS also demonstrated strong test–retest reliability (bladderr= 0.89; bowelr= 0.86) in a small sample of adults (n= 13). Overall, this scale provides researchers and clinicians with a reliable and psychometrically valid assessment tool to measure bladder and bowel incontinence phobia severity.

Paruresis has been recognized as a subtype of Social Anxiety Disorder (SAD). A well-established model of SAD is the extended bivalent fear of evaluation model (extended BFOE) which include socio-cognitive processes such as fear of negative and positive evaluation (FNE and FPE), concerns of social reprisal (CSR), and disqualification of positive social outcomes (DPSO). In addition to the extended BFOE, dysfunctional attitudes (DAs) have also been recognized to contribute towards social anxiety symptoms and distress. The aim of this study was to examine whether an extended BFOE model for SAD could be used to explain paruresis and parcopresis symptoms. Three-hundred-and-sixteen undergraduate students (76.6% female; mean age = 31.25 years) completed a cross-sectional online study. A structural equation model (SEM) indicated the data supported the proposed model very well (χ2 p value = .345, CMIN/df = 1.064, CFI = 1.00, TLI = .999, RMSEA = .014, SRMR = .0107) with significant direct relationships being found between DAs and FNE (p = .002), DAs and FPE (p = .002), FNE and CSR (p = .001), FPE and CSR (p = .001), CSR and paruresis score (p = .045), CSR and DAs (p = .006), FPE and paruresis score (p = .001), FPE and parcopresis score (p = .004), FNE and paruresis score (p = .004), and FNE and parcopresis score (p = .002). Although this research should be replicated, the current study provides evidence that DAs, FNE, FPE and CSR are important contributory factors in paruresis and parcopresis symptoms.

The current study aimed to explore the validity of a single, self-report measure for bladder and bowel anxieties (Bladder and Bowel Anxiety Grouping Item; BABAGI), using two appropriate scales entitled the Shy Bladder and Bowel Scale (SBBS) and the Bladder and Bowel Incontinence Phobia Severity Scale (BBIPSS). This study also aimed to examine the similarities and differences in dysfunctional attitudes (DAs), fear of negative and positive evaluation (FNE and FPE), concerns of social reprisal (CSR), and disqualification of positive social outcomes (DPSO) across individuals who self-identify as having paruresis/parcopresis, incontinence anxiety, or neither condition according to the BABAGI measure. Three-hundred-and-six undergraduate students (77.1% female; mean age = 31.18 years) completed a cross-sectional, online study. The results supported the hypothesis that by using the BABAGI, self-reported paruresis/parcopresis could be reliably identified by SBBS scores of above 6.75 and that self-reported incontinence anxiety could be reliably identified by BBIPSS scores above 15.21. The results also supported the hypothesis that individuals who self-identified as having paruresis/parcopresis or incontinence anxiety would score higher in socio-cognitive processes (DAs, FNE, FPE, CSR, DPSO) compared to individuals who self-identified as having neither condition. Given that the paruresis/parcopresis and incontinence anxiety groups do not significantly differ from each other with respect to socio-cognitive processes, this suggests that both sets of conditions share similar underlying psychosocial processes.

Background Australia has among the highest prevalence of Crohn disease and ulcerative colitis in the world. Management of the chronic gastrointestinal disorders results in significant societal costs and the standard of care is inconsistent across Australia. Aim To audit the quality of care received by patients admitted for inflammatory bowel disease (IBD) across Australia against national IBD standards. Methods A retrospective cross-sectional survey and clinical audit was undertaken assessing organisational resources, clinical processes and outcome measures. This study was conducted in Australian hospitals that care for inpatients with Crohn disease or ulcerative colitis. The main outcome measures were adherence to national IBD standards and comparison of quality of care between hospitals with and without multidisciplinary IBD services. Results A total of 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). A total of 1440 inpatient records was reviewed from 52 hospitals (mean age 37 years; 51% female, 53% Crohn 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 2 years). In general, care was inconsistent, and documentation was poor. Hospitals with a partial IBD service performed better in many processes and outcome measures: for example, 22% reduction in admissions through emergency departments and greater adherence to standards for safety monitoring of biological (89% vs 59%) and immunosuppressive drugs (79% vs 55%) in those hospitals than those without. Conclusion 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.

Social anxiety disorder is a mental health condition that affects 4.7% of Australians each year. The complex interplay between psychoevolutionary and cognitive models has become the focus of resear...

Background Decision support tools may facilitate shared decision-making and improve quality of care. Aim To assess the effectiveness of a decision support tool on improving quality of care in ulcerative colitis. Methods A prospective quality of care intervention was conducted at two Australian hospitals comparing out-patient-based ulcerative colitis care with, and without, a tablet-based decision support tool. This included questions on disease activity management; psychological well-being; and preventive care, with 13 process indicators relevant to each domain. Participants included adult out-patients with mild-to-moderate ulcerative colitis and their clinicians who were divided into two cohorts. The first cohort were followed up immediately after their clinical review to check whether their clinician had discussed the 13 process indicators during the consultation. The second cohort of patients used the decision support tool immediately prior to their consultation which then generated a suggested management plan for the patient and clinician to discuss during the consultation. Management between the 2 cohorts was compared to assess the effectiveness of the decision support tool in improving the primary outcome, defined as the proportion of quality process indicators used for ulcerative colitis care, with and without the decision support tool. Results Thirteen physicians and 100 patients participated. Fifty patients were managed without the decision support tool using standard care (median age 40; 44% male), and 50 patients used the decision support tool (median age 40; 46% male) over a 20-week period. Increase in the median use of process indicators overall was observed following use of the decision support tool (27% vs 100%; P < 0.001). Improvements were seen in psychological well-being management (30% vs 100%; P < 0.001), preventive care (16% vs 100%; P < 0.001) and process indicators related to disease activity management (50% vs 100%; P < 0.001). The decision support tool was found to be usable and acceptable. Shared decision-making was greater in the post-intervention group (mean decision conflict score of 18.0 vs 33.5; P = 0.002). Conclusions The decision support tool substantially improved the quality of the delivery of care. Decision support tools have the potential to minimise errors of omission via a standardised approach to care.

Background. Real-time collection of mental health and disease activity patient-reported outcomes (PROs) are essential to assist clinicians in delivering optimal holistic health care. The aim of this pilot study was to validate a digital support tool (DST) delivered via a tablet device in an outpatient setting to assess IBD activity and psychological distress.Methods. 48 individuals (26 females; average age: 40.04) with IBD completed the DST and a paper-based survey in a hospital IBD outpatient setting. PROs for disease activity and psychological distress (Kessler K10) were compared to paper-based gold-standard measures of disease activity (Partial Mayo Index or Harvey Bradshaw Index completed by the clinician) and psychological distress (Depression Anxiety Stress Scale; completed by the patient). Patient feedback regarding usability and acceptance of the DST was also collected.Results. DST patient-derived disease activity scores were significantly correlated with clinician assessment of disease activity (p<0.01). Patient DST-derived psychological well-being scores were also significantly correlated with the gold-standard measure of psychological distress (p<0.05). Patients found the DST to be easy to use and identified a willingness to follow through with the recommendations provided by the DST in relation to their psychological distress scores.Conclusions. The pilot study demonstrates the value in collecting disease activity and psychological distress PROs via a DST in an outpatient setting. Disease activity and psychological distress PROs were found to correlate significantly with gold standard measures. The findings provide preliminary support for the value of embedding digital technology into clinical care to promote patient engagement and optimal holistic healthcare.

To date, research exploring the socio-cognitive processes associated with paruresis and parcopresis symptomology is lacking. The current study aimed to investigate how the socio-cognitive processes dysfunctional attitudes (DAs) and fear of negative and positive evaluation (FNE and FPE respectively) relate to paruresis and parcopresis symptomology. In total, 254 undergraduate students (74.0% female; mean age = 31.67 years) completed a cross-sectional online study. A structural equation model indicated the data fit reasonably well (χ2 p value = .209, CMIN/df = 1.514, CFI = .995, TLI = .983, RMSEA = .045, SRMR = .0272), with FPE mediating the relationship between DAs and paruresis symptom severity (p = .001) along with parcopresis symptom severity (p = .001). However, secondary analyses identified that FPE and FNE act as mediators between DAs and paruresis and parcopresis symptom severity when placed in separate models. This is the first study to provide evidence that the psychosocial-cognitive processes DAs and fear of evaluation play an important role in paruresis and parcopresis symptomology. Although this research should be replicated, the current study provides evidence that DAs, and FPE are important contributory factors in paruresis and parcopresis symptoms.

Background The mental health response to the coronavirus (COVID‐19) pandemic–related product shortages in those living with chronic gastrointestinal (GI) disorders has received little attention. We aimed to explore the association between the pandemic‐related product shortages and psychological distress in people with GI disorders. Methods This online cross‐sectional survey was nested within an ongoing, international, prospective study of well‐being in people with GI disorders. The study was advertised in multiple countries in May‐September 2020 via patient organizations and social media. The primary outcome measure was distress, evaluated by the Depression Anxiety Stress Scale. We utilized linear regressions, adjusting for covariates and testing individual moderation effects. Key Results Overall, 831 people completed the survey from 27 countries, of whom 82% were female (mean age = 49 years). The most common disorders included inflammatory bowel disease (n = 322), celiac disease (n = 273), and irritable bowel syndrome (n = 260). Significant problems accessing food were reported by 19.8%, non‐medical therapies by 16%, toilet paper by 10.8%, and essential medication by 8.9% of the sample (>5% pain medication). There was a positive association between toilet paper and pain medication shortages and distress, and a negative association between food shortages and distress. Significant moderation effects were identified for COVID‐19 prevalence and toilet paper and food shortages, and between COVID‐19 fear and pain medication shortages. Conclusions and Inferences The study documented a significant relationship between product shortages and psychological distress, which were associated with COVID‐19 prevalence and fear. Strategies addressing COVID‐19 fear could potentially modify the relationship between shortages and distress., Product shortages were associated with psychological distress in people with gastrointestinal disorders at the time of the COVID‐19 pandemic. The relationship between product shortages and distress was moderated by COVID‐19 prevalence and fear.

This study evaluated the mediating role of self-efficacy, coping, depression and anxiety on the relationship between illness perceptions and quality of life in stroke survivors (n = 72; 32 females; mean [SD] age 65.09 [14.14] years; male mean [SD] age 69.83 [11.81]). Illness perceptions (Brief Illness Perceptions Questionnaire; BIPQ), coping styles (Carver Brief-COPE scale; B-COPE), depression/anxiety (Hospital Anxiety and Depression Scale; HADS), self-efficacy (General Self-Efficacy Scale; GSE) and quality of life (Assessment of quality of life; AQOL-6D) were analysed. Correlation analyses showed illness perception, maladaptive coping, self-efficacy, depression and anxiety to have a significant negative relationship with quality of life. Mediation analyses showed that while maladaptive coping and self-efficacy did not mediate the relationship between illness perception and quality of life, depression and anxiety did. The final model explained 76.74% of the variance in quality of life. Although based on a relatively small sample size, these results provide evidence for the important role of psychosocial factors in quality of life in post-stroke cohorts.

This article describes the development and validation of the Gastrointestinal Unhelpful Thinking scale. The purpose of the research was to develop the Gastrointestinal Unhelpful Thinking scale to assess in tandem the primary cognitive-affective drivers of brain-gut dysregulation, gastrointestinal-specific visceral anxiety, and pain catastrophizing. The research involved 3 phases which included undergraduate and community samples. In the first phase, an exploratory factor analysis revealed a 15-item 2-factor (visceral sensitivity and pain catastrophizing) scale (N= 323), which then was confirmed in the second phase: N = 399, χ2(26) = 2.08, p = .001, Tucker-Lewis Index = 0.94, comparative fit index = 0.96, standardized root mean square residual = 0.05, and root mean square error of approximation = 0.07. Demonstrating convergent validity, Gastrointestinal Unhelpful Thinking scale total and subscales were strongly correlated with the modified Manitoba Index, Irritable Bowel Syndrome Symptom Severity Scale scores, Visceral Sensitivity Index, and the Pain Catastrophizing Scale. A third phase (N = 16) established test-retest reliability for the Gastrointestinal Unhelpful Thinking scale (total and subscales). The test-retest reliability correlation coefficient for the Gastrointestinal Unhelpful Thinking scale total score was .93 (p.001) and for the subscales was .86 (p.001) and .94 (p.001), respectively. The Gastrointestinal Unhelpful Thinking scale is a brief psychometrically valid measure of visceral anxiety and pain catastrophizing that can be useful for both clinicians and researchers who wish to measure these thinking patterns and relate them to changes in gastrointestinal and psychological symptoms.

The aim of this cross-sectional study was to use an extended common sense model (CSM) to evaluate the impact of fear of COVID-19 on quality of life (QoL) in an international inflammatory bowel disease cohort. An online study involving 319 adults (75% female, mean (SD) 14.06 (15.57) years of symptoms) completed the Gastrointestinal Symptom Rating Scale, Brief Illness Perceptions Questionnaire, Fear of Contracting COVID-19 Scale, Brief-COPE, Depression, Anxiety and Stress Scale, and the EUROHIS-QOL. The extended CSM had an excellent fit (χ2 (9) = 17.06, p = .05, χ2/N = 1.90, RMSEA = 0.05, SRMR = 0.04, CFI = .99, TLI = .97, GFI = 0.99), indicating the influence of gastrointestinal symptoms on QoL was mediated by illness perceptions, fear of COVID-19, adaptive and maladaptive coping, and psychological distress. Interventions targeting the fear of COVID-19 in the context of an individual's perceptions will likely enhance QoL during the pandemic.

Background Individuals living with coeliac disease generally experience a remission of symptoms after adopting the gluten-free diet but often report substantial treatment burden and ongoing quality of life issues. Psychosocial factors have been suggested to play a significant role in post-diagnosis quality of life but have yet to be systematically reviewed. Aim To review the evidence for psychosocial factors associated with quality of life in adult coeliac disease cohorts. Methods Studies were identified via systematic searches of eight databases (MEDLINE, Embase, Emcare, PsycINFO, Ovid Nursing, CINAHL, Informit Health Collection, Cochrane Library) in May 2019. Results Fourteen studies were included involving 3372 participants (80.2% female, mean age = 46.4 years). Symptoms of depression and anxiety were the most examined psychosocial factors across all studies. Quality of life was differentially associated with psychological distress, illness perceptions, coping, and attitudes/behaviours regarding food and the gluten-free diet. Conclusion Several psychosocial factors are associated with quality of life in adults living with coeliac disease. Current evidence suggests these factors are interrelated and may influence quality of life directly, via reduced psychological well-being, and indirectly, via reduced adherence to the gluten-free diet. Future research is needed to examine these processes concurrently, with the aim of elucidating the psychosocial mechanisms underlying post-diagnosis well-being and identifying potential targets for psychosocial intervention.