Negative Impact of Disorders of Gut-Brain Interaction on Health-Related Quality of Life: Results From the Rome Foundation Global Epidemiology Survey.

BACKGROUND & AIMS: This study used the database from the Rome Foundation Global Epidemiology Survey 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. METHODS: 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 analyses of variance were used to explore physical and mental quality of life, adjusting for multiple comparisons. RESULTS: Among the 54,127 respondents, quality of life deteriorated significantly with increasing number of overlapping DGBI, with respondents reporting ≥2 DGBI having significantly poorer quality of life than those with only 1 DGBI or those without any DGBI. Men with DGBI reported better quality of life than women, and those aged ≥65 years reported better quality of life than those <65 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. CONCLUSIONS: 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.

Acceptance and Commitment Therapy for Adults Living With Inflammatory Bowel Disease and Distress: A Randomized Controlled Trial.

INTRODUCTION: The bidirectional relationship between disease activity and mental health in inflammatory bowel disease (IBD) has prompted investigations into the efficacy of psychotherapeutic interventions such as acceptance and commitment therapy (ACT) on biopsychosocial outcomes. We aimed to examine the efficacy of an ACT program (intervention) in comparison with a cognitive behavioral therapy-informed psychoeducation program (active control) for individuals with IBD and coexistent psychological distress. Both programs were delivered online through a hybrid format (i.e., therapist-led and participant-led sessions). METHODS: A total of 120 adults with IBD were randomized to either the intervention (N = 61) or active control groups (N = 59). Efficacy was determined using linear mixed models for group differences, in rate of changes in study outcomes, between baseline, postintervention, and 3-month follow-up. RESULTS: The primary outcome health-related quality of life significantly improved in the intervention group when compared with the active control group, with a significantly different rate of change observed from baseline to postintervention ( t [190] = 2.15, P = 0.033) in favor of the intervention group with a medium effect size (ß = 0.41, mean difference = 0.07, 95% confidence interval 0.01-0.12, P = 0.014). Similarly, the secondary outcome Crohn's disease activity significantly reduced in the intervention group when compared with the active control group, with a significantly different rate of change observed from baseline to 3-month follow-up ( t [90] = -2.40, P = 0.018) in favor of the intervention group with a large effect size (ß = -0.77, mean difference = -9.43, 95% confidence interval -13.72 to -5.13, P < 0.001) ( P = 0.014). Furthermore, when observing the rate of change in outcomes over time for the groups separately, anxiety symptoms and pain significantly improved in the intervention group only, and conversely, ulcerative colitis activity and stress symptoms significantly improved in the active control group only. All other outcomes (N = 14) significantly improved over time in both groups including IBD activity, gastrointestinal unhelpful thinking patterns, visceral anxiety, fatigue interference, fatigue severity, fatigue frequency, psychological inflexibility, self-efficacy, resilience, current health status, depression symptoms, IBD control, and pain catastrophizing; however, these changes were not significantly different between the groups. DISCUSSION: Both programs were of benefit to people with IBD and distress. However, ACT offers a significant added benefit for health-related quality of life and self-reported Crohn's disease activity and may be a useful adjuvant therapy in integrated IBD care.

An evaluation of sexual function and health-related quality of life following laparoscopic surgery in individuals living with endometriosis.

STUDY QUESTION: What is the relationship between sexual function, health-related quality of life (HRQoL), and laparoscopic surgery in individuals living with endometriosis? SUMMARY ANSWER: A higher number of laparoscopic surgeries is significantly associated with poorer HRQoL and greater levels of sexual dysfunction in individuals with endometriosis. WHAT IS KNOWN ALREADY: Prior research indicates that endometriosis is associated with lowered HRQoL and sexual function and that these outcomes are influenced by endometriosis-related symptom profiles, medical, and surgical management. A limited number of studies have examined changes in sexual function in individuals with endometriosis following laparoscopic surgery or following repeated surgeries. STUDY DESIGN, SIZE, DURATION: A cross-sectional community-based online survey was used to examine the relationships between sexual function, HRQoL, and laparoscopic surgery (n = 210). PARTICIPANTS/MATERIALS, SETTING, METHODS: Individuals with a self-reported diagnosis of endometriosis were recruited via online advertising through social media and gynaecology clinics. Endometriosis-specific data (e.g. diagnostic delay, symptom experience) was collected in addition to engagement with laparoscopic surgery, level of HRQoL (EuroQol-5 Dimension: EQ-5D-5L), and sexual function (Female Sexual Function Index: FSFI). Bivariate correlational analyses and hierarchical multiple regression were used to determine the associations between the variables of interest. MAIN RESULTS AND THE ROLE OF CHANCE: Individuals with endometriosis have substantially poorer HRQoL in comparison to Australian normative samples, with greater levels of endometriosis-related symptom burden, distress, and pain significantly associated with lower levels of HRQoL. The mean FSFI score was suggestive of clinically significant female sexual dysfunction, with the lowest level of function noted in the domain of sexual pain and the highest level of function noted in the sexual satisfaction domain. A greater number of laparoscopic surgeries was significantly associated with poorer overall HRQoL and greater levels of sexual dysfunction. LIMITATIONS, REASONS FOR CAUTION: The cross-sectional nature of the data precludes direct findings of causality and further longitudinal research is recommended. The information pertaining to engagement in laparoscopic surgery was self-report in nature and was not medically verified. WIDER IMPLICATIONS OF THE FINDINGS: The study's findings highlight the pervasive impact of endometriosis on all domains of living, emphasizing the need to extend treatment planning beyond that of physical pain management alone. Early referral for assessment and management of sexual wellbeing is recommended prior to, and post-surgical intervention, with a focus on maintaining post-surgical changes, potentially reducing the need for multiple surgeries. STUDY FUNDING, COMPETING INTEREST(S): The study was not associated with research funding. Author CN reports grant funding from the Australian Government and Medical Research Future Fund (MRFF) and was a previous employee of CSL Vifor (formerly Vifor Pharma Pty Ltd). TRIAL REGISTRATION NUMBER: N/A.

iCare - a self-directed, interactive online program to improve health and wellbeing for people living with upper gastrointestinal or hepato-pancreato-biliary cancers, and their informal carers: the study protocol for a Phase II randomised controlled trial.

BACKGROUND: Up to 70% of people diagnosed with upper gastrointestinal (GI) tract or hepato-pancreato-biliary (HPB) cancers experience substantial reductions in quality of life (QoL), including high distress levels, pain, fatigue, sleep disturbances, weight loss and difficulty swallowing. With few advocacy groups and support systems for adults with upper GI or HPB cancers (i.e. pancreas, liver, stomach, bile duct and oesophageal) and their carers, online supportive care programs may represent an alternate cost-effective mechanism to support this patient group and carers. iCare is a self-directed, interactive, online program that provides information, resources, and psychological packages to patients and their carers from the treatment phase of their condition. The inception and development of iCare has been driven by consumers, advocacy groups, government and health professionals. The aims of this study are to determine the feasibility and acceptability of iCare, examine preliminary efficacy on health-related QoL and carer burden at 3- and 6-months post enrolment, and the potential cost-effectiveness of iCare, from health and societal perspectives, for both patients and carers. METHODS AND ANALYSIS: A Phase II randomised controlled trial. Overall, 162 people with newly diagnosed upper GI or HPB cancers and 162 carers will be recruited via the Upper GI Cancer Registry, online advertisements, or hospital clinics. Patients and carers will be randomly allocated (1:1) to the iCare program or usual care. Participant assessments will be at enrolment, 3- and 6-months later. The primary outcomes are i) feasibility, measured by eligibility, recruitment, response and attrition rates, and ii) acceptability, measured by engagement with iCare (frequency of logins, time spent using iCare, and use of features over the intervention period). Secondary outcomes are patient changes in QoL and unmet needs, and carer burden, unmet needs and QoL. Linear mixed models will be fitted to obtain preliminary estimates of efficacy and variability for secondary outcomes. The economic analysis will include a cost-consequences analysis where all outcomes will be compared with costs. DISCUSSION: iCare provides a potential model of supportive care to improve QoL, unmet needs and burden of disease among people living with upper GI or HPB cancers and their carers. AUSTRALIAN AND NEW ZEALAND CLINICAL TRIALS REGISTRY: ACTRN12623001185651. This protocol reflects Version #1 26 April 2023.

Menstrual pain in Australian adolescent girls and its impact on regular activities: a population-based cohort analysis based on Longitudinal Study of Australian Children survey data.

OBJECTIVES: To determine the proportion of Australian adolescent girls who experience menstrual pain (dysmenorrhea); to assess associations of dysmenorrhea and period pain severity with adolescents missing regular activities because of their periods. STUDY DESIGN: Prospective, population-based cohort study; analysis of Longitudinal Study of Australian Children (LSAC) survey data. SETTING, PARTICIPANTS: Female adolescents in the nationally representative cross-sequential sample of Australian children recruited in 2004 for the Kinder cohort (aged 4-5 years at enrolment). Survey data from waves 6 (mean age 14 years), wave 7 (16 years) and wave 8 (18 years) were analysed. MAIN OUTCOME MEASURES: Severity of period pain during the preceding three months (very, quite, a little, or not at all painful); number of activity types missed because of periods; relationship between missing activities and period pain severity. RESULTS: Of the 1835 participating female members of the LSAC Kinder cohort at waves 6 to 8, 1600 (87%) responded to questions about menstruation during at least one of waves 6 to 8 of data collection. At wave 6 (14 years), 227 of 644 respondents (35%) reported dysmenorrhea, 675 of 1341 (50%) at wave 6 (16 years), and 518 of 1115 (46%) at wave 8 (18 years). Of the 366 participants who reported period pain severity at all three waves, 137 reported no dysmenorrhea at all three waves (37%), 66 reported dysmenorrhea at all three waves (18%), 89 reported increasing period pain over time (24%), and 38 reported declining pain (10%). At wave 6, 223 of 647 participants reported missing at least one activity because of their periods (34%), 454 of 1341 at wave 7 (34%), and 344 of 1111 at wave 8 (31%). Of the participants who experienced very painful periods, 72% (wave 6), 63% (wave 7), and 65% (wave 8) missed at least one activity type because of their periods, as did 45% (wave 6), 36% (wave 7), and 40% (wave 8) of those who experienced quite painful periods. CONCLUSIONS: A large proportion of adolescent girls in Australia experience period pain that affects their engagement in regular activities, including school attendance. Recognising adolescent period pain is important not only for enhancing their immediate quality of life with appropriate support and interventions, but also as part of early screening for chronic health conditions such as endometriosis.

People with Inflammatory Bowel Disease Prefer Cognitive Behavioral Therapy for Fatigue Management: A Conjoint Analysis.

BACKGROUND: Psychological interventions are a promising area for fatigue management in patients with inflammatory bowel disease (IBD). However, most interventions trialled to date have been pilots with limited direct input from patients about the type of intervention they want. Thus, this study aimed to explore patient preferences for a psychological IBD fatigue intervention. METHODS: An international online cross-sectional survey was conducted with adults with self-reported IBD. A conjoint analysis was employed to elicit, through a series of forced-choice scenarios, patient preferences for a fatigue intervention. For this study, the attributes manipulated across these forced-choice scenarios were type of intervention, modality of delivery, and duration of intervention. RESULTS: Overall, 834 people with IBD were included in analysis. Respondents ranked the type of psychological intervention as most important for overall preference (with cognitive-behavioral therapy (CBT) preferred over the other approaches), followed by modality of delivery, but placed very little importance on how long the intervention runs for. Patients with IBD appear to most strongly preference a short online CBT intervention for managing their IBD-related fatigue. CONCLUSION: This study helps provide therapists and program developers clear direction on patient preferences when it comes to developing new psychological programs that address fatigue in IBD.

Psychological Care for People with Inflammatory Bowel Diseases: Exploring Consumers' Perspectives to Inform Future Service Co-design.

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.

Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation.

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.

'It just stops me from living': A qualitative study of losses experienced by women with self-reported endometriosis.

AIMS: To understand the experience of loss in Australian women with endometriosis. DESIGN: A total of 532 participants completed an online survey containing three open-ended questions relating to pelvic pain and activity loss due to endometriosis. Participants were Australian women aged between 18 and 50 years (M = 30.8, SD = 7.1) with a self-reported diagnosis of endometriosis. An inductive, qualitative approach, with template analysis was used to identify and organize themes. A pragmatic feminist perspective was used to interpret the findings. RESULTS: Three main themes were identified: the loss of liberty: 'I'm trapped in the house'; the loss of bodily autonomy: 'I can barely move/breathe/talk' and loss of connection: 'It stops me from being social'. Pain emerged as the greatest concern for participants, preventing them from the physical functioning required to participate in many of life's activities. CONCLUSIONS: The losses women with endometriosis experience are wide-reaching, restricting control and choice across multiple life domains. Losses were often unacknowledged by loved ones and healthcare providers, further impacting the physical, emotional and mental health of participants. PATIENT OR PUBLIC CONTRIBUTION: People with endometriosis were involved in the design of the study, including identifying topics of interest.

Psychotherapy appears to improve symptoms of functional dyspepsia and anxiety: systematic review with meta-analysis.

This systematic review and meta-analysis examined the efficacy of psychotherapy on symptoms of functional dyspepsia, anxiety, depression and quality of life. We searched Medline, Embase, PsycINFO, Emcare, Ovid Nursing, CINAHL, Cochrane Library, Informit Health Collection and ClinicalTrials.gov on 2 July 2021. Randomised controlled trials that compared psychotherapy to non-psychotherapy interventions in adults with functional dyspepsia were included. Meta-analyses were conducted (using Hedges's g) under random effects models. Overall, 1,575 records were identified after duplicates were removed, with nine randomised controlled trials (n = 786) included. Preliminary meta-analyses showed that psychotherapy outperformed control conditions at post-test and follow-up on functional dyspepsia symptom severity and anxiety symptoms, but no differences emerged for depressive symptoms. The qualitative synthesis showed psychotherapy's promise in improving quality of life in functional dyspepsia. Psychotherapy might have a small to moderate effect on functional dyspepsia symptoms and anxiety at short- and long-term. However, conclusions are limited by the small number of trials with a high risk of bias.