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.

A qualitative exploration of gynaecological healthcare experiences of lesbian, gay, bisexual, transgender, queer people assigned female at birth.

BACKGROUND: Lesbian, gay, bisexual, transgender, queer, asexual/aromantic (LGBTQA+) people, assigned female at birth (AFAB), experience disproportionately poorer gynaecological healthcare outcomes compared to their cisgender, heterosexual peers. The barriers to gynaecological care remain poorly understood. In a step toward bridging this gap, the current study explored the lived gynaecological healthcare experiences of Australian LGBTQA+ AFAB people and the barriers they experience in accessing care. MATERIALS AND METHODS: Semi-structured interviews were conducted with 22 LGBTQA+ AFAB people. An inductive thematic qualitative design was used to explore the lived experiences and identify themes associated with the reported experiences. RESULTS: Thematic analysis identified seven themes related to experiences in accessing gynaecological healthcare, including discrimination, fear, perceived provider or cultural incompetency, accessibility, and gender identity. Several sub-themes were also identified such as refusal of care, microaggression, misgendering, and patient as educator. CONCLUSIONS: Participants suggested that barriers to care could be alleviated by the integration of LGBTQA+ specific healthcare training into the university-level medical curriculum and professional development programs that address cultural competency and inclusive healthcare. These preliminary findings inform the necessity for the development of evidence-based practice guidelines that specifically address the unique and diverse needs of the LGBTQA+ AFAB population.

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.

An Exploration of Dyadic Relationship Approach-Avoidance Goals and Relationship and Sexual Satisfaction in Couples Coping with Endometriosis.

Endometriosis affects women of reproductive age and is associated with higher levels of sexual and relational distress. Despite the relational context of endometriosis, the research pertaining to dyadic relationship goals is lacking. An exploration of the relationship goals of couples coping with endometriosis can facilitate the understanding of potential protective mechanisms that mitigate the relational components of the condition. Guided by the approach-avoidance theoretical framework, the current cross-sectional study aimed to examine the role relationship goals play in sexual and relationship satisfaction in couples coping with endometriosis. Approach goals relate to the pursuit of a positive outcomes, whereas avoidance goals relate to the avoidance of negative outcomes. Women with endometriosis and their partners (N = 61) completed an online survey measuring relationship goals and relationship and sexual satisfaction. The study results indicated that, for women, their own and their partner's higher relationship approach goals were linked to higher sexual satisfaction. For partners of women with endometriosis, their own higher relationship approach goals were associated with their own higher relationship satisfaction. Higher relationship avoidance goals in both women with endometriosis and partners were associated with higher relationship satisfaction. The study's findings highlight relationship goals as relevant to the relational and sexual experience of couples coping with endometriosis. When treating women with endometriosis, the inclusion of partners and consideration of factors beyond the physical illness are important for a holistic management approach.

Psychological interventions for endometriosis-related symptoms: a systematic review with narrative data synthesis.

Endometriosis impacts the physical, psychological and quality of life domains of women. Despite the medical and/or surgical management of endometriosis, the presence of persistent pelvic pain and psychological distress often continues, suggesting a role for psychological interventions in treatment planning. The present study aimed to conduct the first systematic review, with narrative data synthesis, on psychological interventions for endometriosis-related symptoms. The study also aimed to determine the effectiveness of current interventions in resolving psychological and pain-related loss of function associated with endometriosis and to identify gaps in the literature requiring further research. A total of 15,816 studies were retrieved through database searching and handsearching, with two researchers identifying 11 full-text studies that met inclusion criteria. Three studies of 'moderate' quality were identified, although the overall quality of studies was found to be 'weak', with a 'high' risk of bias. The findings regarding the effectiveness of psychological interventions for endometriosis-related symptoms remain inconclusive. Further research into psychological interventions for women with endometriosis that employ evidence-based protocols with high intervention integrity is recommended.

A validation of the body compassion scale in females.

Body compassion bridges together the constructs of body image and self-compassion and refers to the relationship people have with their bodies, encompassing defusion, common humanity and acceptance. The purpose of the current study was to validate the 23-item Body Compassion Scale (BCS), in a female sample, and to determine the distinctiveness of body compassion from the similar construct of self-compassion. A total of 513 females completed an online cross-sectional survey examining body compassion, self-compassion, body image, and psychological health. Results supported the validation of the three-factor structure of the BCS, with the subscales of defusion and acceptance being more strongly associated with measures of body image than self-compassion. The BCS subscale of common humanity revealed lower associations with body image compared to self-compassion. The findings suggest that body compassion is a body-specific construct relating to body image concerns and while related, is distinct, from the construct of self-compassion.

A qualitative exploration of reunification post alienation from the perspective of adult alienated children and targeted parents.

Introduction: The aim of this study was to explore the experiences of voluntary reunification from the perspectives of adult alienated children and targeted parents. Methods: Nine adult alienated children and 12 targeted parents participated in semi-structured interviews which were transcribed verbatim and analyzed thematically. Results: Six themes emerged in the data from the adult alienated children including catalysts for reunification, factors influencing reunification, adult alienated child relationships, the role of communication in reunification, adult alienated child understandings of alienation post reunification, and the role of therapy in reunification. Three themes emerged from the targeted parents including what is reunification, factors impacting reunification, and life after reunification. Discussion: Findings from the present study offer novel insights into the experience of voluntary reunification from the perspectives of both adult alienated children and targeted parents. They illustrate that voluntary reunification is a process that takes time. This process can span decades and can include periods of connection and rejection.

Psychological management of patients with chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS): a systematic review.

OBJECTIVES: Chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) is a complex condition. Despite recommendations for the inclusion of non-pharmacological treatment in the management of CP/CPPS, the focus has predominantly been on the inclusion of physical therapies with minimal discussion of psychological interventions. Therefore, this systematic review aimed to evaluate peer-reviewed studies of psychological interventions for men with CP/CPPS to determine their therapeutic efficacy and quality of intervention. METHODS: The review was registered in PROSPERO and based on PRISMA 2020 protocol. The systematic literature search was conducted in six databases. Quantitative studies of psychological intervention for adult men with CP/CPPS that provided outcome measures of pain, quality of life and/or psychological symptoms were reviewed. The Oxford level of evidence and Quality Assessment Tool for Quantitative Studies developed by the Effective Public Health Practice were employed. RESULTS: A total of 4,503 studies were reviewed; seven met the inclusion criteria. The included studies were randomised controlled trials, cohort, repeated measures, and case-series studies, with most including combined treatment for CP/CPPS. Cognitive therapy, cognitive behavioural therapy, or paradoxical relaxation training were found to be effective. However, high risks of bias were found in all included studies, limiting the generalisability and reliability of findings. CONCLUSIONS: Evidence is preliminary but shows promise for psychological treatment either as a combined or standalone treatment for CP/CPPS. However, there is a need to develop research with a more rigorous methodology to evaluate psychological treatments for men with CP/CPPS.

Barriers in chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) management: perspectives from health practitioners.

OBJECTIVES: Chronic prostatitis/Chronic Pelvic Pain Syndrome (CP/CPPS) is a complex condition which causes a significant burden on the diagnosed individuals. Assessment and management are perplexing, often resulting in unsatisfactory outcomes. Existing research has only focused on patients' perspectives of pain experiences, but scant evidence is available to understand the barriers that undermine effective pain management. Using an exploratory approach, this study examined these barriers from practitioners' perspectives. METHODS: Twelve semi-structured interviews were conducted with practitioners across disciplines who have experience in chronic pelvic pain management in males. Practitioners expressed their views and experiences in supporting men with CP/CPPS and what barriers they perceived when providing treatment for patients. Data were analysed using reflexive thematic analysis supported by NVivo software. RESULTS: Five broad and interrelated themes were identified: (1) Where to Start, (2) Insufficient Resources, (3) Prioritisation, (4) Training and Confident Practice and (5) Constraints in Help-Seeking. CONCLUSIONS: Practitioners value multimodal management using a biopsychosocial approach; however, practical challenges prevent practitioners from choosing and applying this approach in clinical practice. The findings also identified some unique challenges faced by men with CP/CPPS consistent with previous evidence from patient perspective. Refining terminology, developing specific resources, and increasing psychosocial treatment options are urgently needed.

The temporal effect of emotional distress on psychological and physical functioning in endometriosis: A 12-month prospective study.

Psychological factors of emotional distress and cognition have an important role in the understanding and management of endometriosis; however, their temporal relationship with key pain variables is not fully understood. This exploratory study sought to establish the temporal relationship between psychological and pain-related factors in a 12-month prospective study of 208 Australian women with endometriosis. Participants, aged 18-50 years and living in Australia, were recruited via social media and completed baseline (May 2019) and 12-month follow-up (June 2020) surveys. Participants who reported a diagnosis of endometriosis and menses in the past 12 months were included in the study. Structural equation modelling was used to determine the temporal effects of psychological and pain-related factors in endometriosis. In a covariate-adjusted model, baseline emotional distress was the only variable to predict pain catastrophizing (ß = .24, p < .01), functional pain disability (ß = .16, p < .05) and concomitant emotional distress (ß = .55, p < .001) 12 months later, adjusting for age and chronic illness. Women who exhibit symptoms of distress may be at risk of poorer psychological and physical function at 12 months. Further research is required to understand the impact of psychological management early in the disease course.

Feasibility, Acceptability, and Preliminary Efficacy of Acceptance Commitment Therapy for Adults Living With Inflammatory Bowel Disease and Distress.

BACKGROUND: The bidirectional relationship between inflammatory bowel disease (IBD) flare-ups and depression/anxiety symptoms has prompted investigations into psychotherapy to improve health-related quality of life (HRQoL) by targeting depression and anxiety. Acceptance commitment therapy (ACT) is effective in improving symptoms of depression and anxiety in people with chronic diseases, yet minimal research has examined ACT's effectiveness for IBD. This study examines the feasibility, acceptability, and preliminary efficacy of the ACTforIBD program, an online program codesigned with consumers to deliver ACT to those with IBD. METHODS: Adults with IBD and symptoms of mild-moderate distress were randomized to ACTforIBD or an active control (psychoeducation) condition. Participants completed 8 weekly, 1-hour sessions, 4 of which were therapist facilitated. Feasibility was based on recruitment and retention and acceptability was derived from postprogram satisfaction measures. Preliminary efficacy was determined by group differences in rate of change in study outcomes from baseline to postprogram. RESULTS: Of 62 participants (89% women, 11% men; mean age  33 years), 55 completed the program (ACTforIBD: n = 26 [83.9%]; active control: n = 29 [93.5%]). Adherence and acceptability were high in the ACTforIBD group, with 80% of participants completing all self-directed modules and 78% of participants expressing satisfaction with the program. Significant and marginally significant group × time interactions were found for anxiety symptoms (b = -1.89; 95% confidence interval, -3.38 to -0.42) and psychological HRQoL (b = -0.04; 95% confidence interval, -0.07 to 0.01), showing decreased anxiety and increased psychological HRQoL in the intervention group. CONCLUSIONS: ACTforIBD is feasible, acceptable, and improved anxiety symptoms, and psychological HRQoL. This highlights the need for a full-scale randomized controlled trial to further examine the program's efficacy.

Health-related quality of life in endometriosis: The influence of endometriosis-related symptom presence and distress.

This international cross-sectional study examined the relationships between endometriosis-related symptom experience and health-related quality of life (HRQoL) in 318 women with endometriosis. Measures of symptom burden and distress, pain, psychological wellbeing, and HRQoL were collected via an online survey. Age, symptom duration, burden, and distress were associated with lower psychological wellbeing and HRQoL, with small to medium effect sizes. Somatic concern, depression, pain, dysmenorrhea, clitoral pain, dyspareunia, and bloating were found to be significant correlates of HRQoL. The findings highlight the importance of considering a broader range of endometriosis-related symptoms than pain alone and the ongoing need to reduce diagnostic delay in endometriosis.

Physical and psychological correlates of self and body compassion in women with polycystic ovary syndrome.

This international cross-sectional study examined the level and potential correlates of self and body compassion in women (n = 227) with polycystic ovary syndrome (PCOS). Participants completed an online survey examining quality of life, psychological health, body image and self and body compassion. Low levels of self and body compassion were found, with depression and body image concern identified as negative correlates of self and body compassion. Physical health was identified as a positive correlate of body compassion. The findings identify the important relationship between body image, psychological health and self and body compassion in women with PCOS.

Acceptance commitment therapy (ACT) for psychological distress associated with inflammatory bowel disease (IBD): protocol for a feasibility trial of the ACTforIBD programme.

INTRODUCTION: Inflammatory bowel disease (IBD) involves an abnormal immune response to healthy gut bacteria. When a person develops IBD, their susceptibility to anxiety and/or depression increases. The ACTforIBD programme, specifically designed for people with IBD and comorbid psychological distress, draws on acceptance and commitment therapy (ACT), which promotes acceptance of situations that cannot be solved such as persistent physical symptoms. There are no ACT trials for IBD using an active control group or a telemedicine approach, which is important to improve accessibility, particularly in the context of the ongoing COVID-19 pandemic. The ACTforIBD programme is administered online with a 4-hour therapist involvement per participant only; if successful it can be widely implemented to improve the well-being of many individuals with IBD. METHODS AND ANALYSIS: Our team have codesigned with consumers the ACTforIBD programme, an 8-week intervention of 1-hour sessions, with the first three sessions and the last session delivered one-to-one by a psychologist, and the other sessions self-directed online. This study aims to evaluate the feasibility and preliminary efficacy of ACTforIBD to reduce psychological distress in patients with IBD. Using a randomised controlled trial, 25 participants will be randomised to ACTforIBD, and 25 patients to an active control condition. ETHICS AND DISSEMINATION: This protocol has been approved by Deakin University Research Ethics Committee in September 2021 (Ref. 2021-263) and the New Zealand Central Health and Disability Ethics Committee in December 2021 (Ref. 2021 EXP 11384). The results of this research will be published in peer-reviewed journals and shared with various stakeholders, including community members, policy-makers and researchers, through local and international conferences. TRIAL REGISTRATION NUMBER: ACTRN12621001316897.

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.

Emotional intimacy, empathic concern, and relationship satisfaction in women with endometriosis and their partners.

INTRODUCTION: This is the first study to explore relationship satisfaction through a dyadic lens in couples living with endometriosis. This is timely and important given that endometriosis is a shared experience within the couple rather than an isolated experience occurring for the individual members of a couple. METHODS: Sixty couples completed online measures assessing emotional intimacy, empathic concern, psychological health, and relationship satisfaction. RESULTS: Emotional intimacy was associated with one's own relationship satisfaction and partner emotional intimacy was associated with the woman's relationship satisfaction in couples living with endometriosis. Women's empathic concern was unrelated to their own and their partners' relationship satisfaction. However, partner empathic concern was associated with both their own and the woman's relationship satisfaction. CONCLUSIONS: Healthcare providers are encouraged to engage partners of women diagnosed with endometriosis in education and treatment processes. This engagement could be used to ascertain, and improve where needed, the emotional intimacy and empathic concern experienced by the couple.

The impact of the nurse-physician professional relationship on nurses' experience of ethical dilemmas in effective pain management.

The aims of the current investigation were (1) to examine the ethical and professional conflicts experienced by Tasmanian registered nurses in attempting to provide optimal pain management, and (2) to examine nurse satisfaction with their professional relationship with physicians and with their level of involvement in pain management. A total of 1,015 registered nurses completed a 21-item survey examining ethical and professional conflicts encountered during patient pain management. Data also were gathered investigating nurse satisfaction with their involvement in and professional relationship with physicians during pain management. The respondents who felt adequately consulted by physicians were significantly more likely to instigate the consultation process than the respondents who felt that they were not adequately consulted by physicians about their patient's pain status. This was marked in relation to the need for increased pain relief medications. Nurses who did not feel adequately consulted by physicians were significantly more likely to experience ethical conflicts such as concerns about undermedication and patient reluctance to report pain. Nurses' concerns related to ethical conflicts concerning effective pain management are affected by their relationship with physicians. Education, for both nurses and physicians, concerning the role of the nurse in the workplace will help to ensure that these conflicts do not arise. Guidelines concerning the level of patient care at which consultation is necessary will ensure fewer conflicts and greater nurse satisfaction in the workplace.

The impact of the nurse-physician relationship on barriers encountered by nurses during pain management.

The aim of the current investigation was to examine the barriers encountered by Tasmanian registered nurses when attempting to provide optimal pain management. The impact of nurse satisfaction with their professional relationship with physicians during pain management on the types of barriers encountered was also examined. A total of 1,015 registered nurses completed a 21-item survey that examined the types of barriers encountered during pain management. In addition, data were gathered on nurses' satisfaction with their professional relationship with physicians during pain management. More than one-third of the respondents indicated that they had encountered at least one type of barrier to providing optimal pain relief, including insufficient cooperation by physicians and inadequate prescriptions of analgesic medications. Nurses who did not feel adequately consulted by physicians were significantly more likely to encounter barriers such as insufficient cooperation by patient's physicians and inadequate prescription of analgesic medications. The barriers to effective pain management encountered by nurses were affected by their relationship with physicians. Education, for both nurses and physicians, concerning the role of the nurse in the workplace will help to ensure that nurses encounter fewer barriers during pain management. Optimal pain management practice will result if guidelines for dealing effectively with barriers are tailored to the specific type of institution and the unit within those institutions.