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.

Virtual adjunctive gut-directed hypnotherapy for people with Crohn's disease: A randomized controlled pilot and feasibility trial.

BACKGROUND: Gut-directed hypnotherapy appears to be a promising adjunctive treatment for people with Crohn's disease. The primary objective of this pilot trial was to evaluate feasibility and acceptability of virtually delivered hypnotherapy to determine the parameters for a future definitive trial. METHODS: This prospective, single-site, randomized controlled pilot and feasibility trial compared a 7-week course of virtually delivered adjunctive gut-directed hypnotherapy to standard medical treatment only for adults with Crohn's disease. Primary outcomes were study feasibility and intervention acceptability. Secondary outcomes were objective disease activity and patient-reported outcomes. Assessments took place at five time-points: baseline, post-intervention, and follow-up three-, six-, and 12-months post-intervention. KEY RESULTS: Recruitment took place between July 2020 and August 2021 at a tertiary hospital. Recruitment was initially slow and subsequently expanded to community settings. Thirty-seven participants were enrolled in the trial: 95% were retained at post-intervention and 76% at 12-months. Completion of online assessments was high (97-100% across all time-points) whilst objective data collection was low (34-44%). Most intervention participants completed all hypnotherapy sessions (88%) and reported being extremely satisfied (73%), despite 60% experiencing technical issues. CONCLUSION & INFERENCES: Virtually delivered hypnotherapy was acceptable to participants. Certain aspects of the trial including online assessment were feasible, while recruitment and objective data collection were challenges. Undertaking a future definitive trial will require broader recruitment scope and significant funding for widespread objective data collection. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry ANZCTR#1260000348954.

Lessons from implementing the Australian National Action Plan for Endometriosis.

Abstract: Endometriosis is a common yet under-recognised chronic disease with one in nine (more than 830,000) women and those assigned female at birth diagnosed with endometriosis by the age of 44 years in Australia. In 2018, Australia was the first country to develop a roadmap and blueprint to tackle endometriosis in a nationwide, coordinated manner. This blueprint is outlined in the National Action Plan for Endometriosis (NAPE), created from a partnership between government, endometriosis experts and advocacy groups. The NAPE aims to improve patient outcomes in the areas of awareness and education, clinical management and care and research. As researchers and clinicians are working to improve the lives of those with endometriosis, we discuss our experiences since the launch of the plan to highlight areas of consideration by other countries when developing research priorities and clinical plans. Historically, major barriers for those with endometriosis have been twofold; first, obtaining a diagnosis and secondly, effective symptom management post-diagnosis. In recent years, there have been calls to move away from the historically accepted 'gold-standard' surgical diagnosis and single-provider specialist care. As there are currently no reliable biomarkers for endometriosis diagnosis, specialist endometriosis scans and MRI incorporating artificial intelligence offer a novel method of visualisation and promising affordable non-invasive diagnostic tool incorporating well-established technologies. The recognised challenges of ongoing pain and symptom management, a holistic interdisciplinary care approach and access to a chronic disease management plan, could lead to improved patient outcomes while reducing healthcare costs. Lay summary: Endometriosis is a chronic disease where tissue like the lining of the uterus is found in other locations around the body. For the 830,000 people living with endometriosis in Australia, this often results in an immense burden on all aspects of daily life. In 2018, Australia was the first country to introduce a roadmap and blueprint to tackle endometriosis in a nationwide coordinated manner with the National Action Plan for Endometriosis. This plan was created as a partnership between government, endometriosis experts and advocacy groups. There are several other countries who are now considering similar plans to address the burden of endometriosis. As researchers and clinicians are working to improve the lives of those with endometriosis, we share our experiences and discuss areas that should be considered when developing these national plans, including diagnostic pathways without the need for surgery, and building new centres of expertise in Endometriosis and Pelvic Pain.

"I'm in iso all the time anyway": A mixed methods study on the impact of COVID-19 on women with endometriosis.

OBJECTIVE: The COVID-19 pandemic has resulted in restrictions and social isolation measures, which carry mental health risks. Cancellation of surgery and appointments, medication shortages and fear of the virus itself may have further challenged wellbeing. We aimed to understand how COVID-19 has affected people with endometriosis. METHODS: Using a mixed methods design, we examined; 1) the impact of COVID-19 on endometriosis related healthcare, symptoms and functioning; and 2) the relationship between a measure of fear of COVID-19 and qualitative impact in 162 women with endometriosis. RESULTS: We found that 60% of women reported impact of the pandemic upon healthcare, with sub-themes documenting the difficulty of cancelled and delayed treatment, specific COVID-19 barriers, and the advantages and disadvantages of telehealth. Only 23% reported negative impact on symptoms, specifically stress; 76% reported impact on daily functioning, with sub-themes related to compromised work, social life and healthy living. A 'hidden benefits' theme revealed ways that COVID-19 had improved some women's lives, including working from home, and the opportunity for healthy lifestyle choices. Logistic regressions revealed that fear of COVID-19 significantly predicted impact themes (healthcare odds ratio = 0.93, 95% confidence interval: 0.87-0.98; symptoms odds ratio = 0.88, 95% confidence interval: 0.82-0.95; functioning odds ratio = 0.92, 95% confidence interval: 0.85-0.99). CONCLUSION: Our findings indicate the need to provide patients with supportive care during pandemic restrictions that leverage self-management strategies.

Clinical Case Report: Yoga for Fatigue in Five Young Adult Survivors of Childhood Cancer.

PURPOSE: Cancer-related fatigue (CRF) is a distressing consequence of cancer and its treatment. CRF impacts many young adult (YA) survivors of childhood cancer, compromising work, social relationships, and daily activities. No satisfactory treatment exists. This pilot study aimed to assess the feasibility, safety, and preliminary efficacy of an 8-week twice/week Iyengar yoga (IY) intervention for treating persistent fatigue in YA survivors of childhood cancer. METHODS: Using a single-arm mixed-methods design, adult childhood cancer survivors aged between 18 and 39 years were recruited from a survivorship clinic at a single institution. Quantitative: The primary outcome was fatigue as measured by the Functional Assessment of Chronic Illness Therapy-Fatigue. Secondary outcomes included vitality, social functioning, multidimensional fatigue, mood, and sleep. Weekly self-report monitoring data were collected. Qualitative: Participants also completed a post-intervention interview, major themes evaluated. RESULTS: Five participants enrolled into the study and four completed the intervention. Attendance was 92% and there were no adverse events. Baseline mobility was highly varied, with one YA having had a hemipelvectomy. Quantitative data revealed significantly improved fatigue, social functioning, somatization, and general and emotional manifestations of fatigue following yoga. Qualitative data cross validated, clarified, and expanded upon the quantitative findings. CONCLUSIONS: The study suggests that a brief IY intervention is safe for YA survivors of childhood cancer, even for those with physical disabilities. Preliminary efficacy was demonstrated for the primary outcome of fatigue. Qualitative data elucidated additional improvements, such as work-related social functioning, and a sense of calm and relaxation.

Sociodemographic factors in a pediatric chronic pain clinic: The roles of age, sex and minority status in pain and health characteristics.

Little is known about how sociodemographic factors relate to children's chronic pain. This paper describes the pain, health, and sociodemographic characteristics of a cohort of children presenting to an urban tertiary chronic pain clinic and documents the role of age, sex and minority status on pain-related characteristics. A multidisciplinary, tertiary clinic specializing in pediatric chronic pain. Two hundred and nineteen patients and their parents were given questionnaire packets to fill out prior to their intake appointment which included demographic information, clinical information, Child Health Questionnaire - Parent Report, Functional Disability Index - Parent Report, Child Somatization Index - Parent Report, and a Pain Intensity Scale. Additional clinical information was obtained from patients' medical records via chart review. This clinical sample exhibited compromised functioning in a number of domains, including school attendance, bodily pain, and health compared to normative data. Patients also exhibited high levels of functional disability. Minority children evidenced decreased sleep, increased somatization, higher levels of functional disability, and increased pain intensity compared to Caucasians. Caucasians were more likely to endorse headaches than minorities, and girls were more likely than boys to present with fibromyalgia. Younger children reported better functioning than did teens. The results indicate that sociodemographic factors are significantly associated with several pain-related characteristics in children with chronic pain. Further research must address potential mechanisms of these relationships and applications for treatment.