Randomised controlled pilot trial of the EndoSMS supportive text message intervention for individuals with endometriosis: Feasibility and acceptability results.

OBJECTIVE: Diminished quality of life, inadequate support and social isolation are commonly experienced by individuals living with the chronic pain condition, endometriosis. We aimed to determine the feasibility and acceptability of EndoSMS, a psychologically-focused text message intervention designed to support individuals living with endometriosis. METHODS: As part of a two-arm parallel pilot randomised controlled trial with waitlist control, the feasibility and acceptability of a brief (3-month) version of EndoSMS was assessed using a mixed methods approach. Feasibility data (uptake, attrition, text message delivery analytics) and user acceptability (via self-report survey items and written feedback) were assessed. Qualitative data were thematically analysed using the template approach. Primary trial outcomes are not reported in this paper. RESULTS: Feasibility was indicated by: high conversion rate (99.1 %), low attrition (14.2 %), few opt-outs (0.02 %) and a high message delivery rate (99.8 %). Most intervention participants indicated user acceptability (mean = 4.02/5) across self-report questions. Most rated the length of the program (65.5 %), and the number (80.9 %) and language (94.5 %) of the text messages to be 'just right'. Thematic analysis created four themes: A shared "battle": Feeling less isolated and alone; "Be kind to yourself": A focus on self-care, self-compassion and active coping; Keeping endometriosis at the forefront: Helpful or stressful?; Mixed perceptions surrounding the provision of general endometriosis information; and, Tailoring of text messages. CONCLUSION: EndoSMS supportive text message program was feasible and acceptable for individuals with endometriosis. Future developments of the program should consider greater tailoring of content to user needs. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ACTRN12621001642875).

Perceived challenges in treatment decision-making for endometriosis: healthcare professional perspectives.

Background: Endometriosis, a systemic chronic inflammatory condition which has no cure, has a high symptom burden that can negatively impact every facet of life. Given the absence of a gold-standard treatment, the best symptom management regimen in endometriosis is heavily reliant on a patient's values and preferences, making shared decision-making (SDM) vital. However, a comprehensive patient decision aid (PtDA) intervention that could facilitate patient decision-making and promote SDM is lacking in endometriosis, and there is little research on the decisional support needs of individuals with this condition. This qualitative study aimed to explore healthcare professional (HP) perspectives of their clients' decisional support needs when choosing treatments to manage endometriosis symptoms, with a view to evaluating the need for a PtDA. Methods: Australian HPs identified as specialising in endometriosis care (N = 13) were invited to participate in a short interview over the Internet by phone. Questions focussed on perceived facilitators and challenges of decision-making when choosing treatments for endometriosis. Transcribed qualitative data were thematically analysed and verified by multiple coders, using the template approach. Results: Four themes were identified: (1) Identifying and setting priorities; (2) HPs' lack of time and perceived lack of knowledge; (3) Patient-centred care and SDM, including patient capacity; and (4) Decision-making blinded by hope. This is the first known study to explore HPs' perspectives on patient decision-making challenges in endometriosis. Discussion: Findings draw attention to the difficulties people with endometriosis experience when assessing and choosing treatments, highlighting the need for a comprehensive PtDA intervention to support this decision-making.

Locked inside: Living with uncertainty in self-management for endometriosis during the COVID-19 pandemic.

OBJECTIVE: A high symptom burden systemic inflammatory disorder, endometriosis typically entails both medical management and self-management strategies. The COVID-19 pandemic in Australia precipitated changes to healthcare provision, societal restrictions, and negative psychosocial outcomes particularly for those managing chronic illnesses (e.g., endometriosis). This study's objective was to address the following questions: "How have endometriosis self-management strategies changed since the outbreak of COVID-19, and what are the consequences of these changes?" METHODS: In total, 21 respondents residing in Australia during the COVID-19 pandemic participated in a semi-structured interview following completion of an online survey advertised by Endometriosis Australia. In the survey, respondents provided demographic and clinical information, and psychological distress was assessed. Interviews were conducted online and recorded for transcribing. Transcribed data were thematically analyzed using the template method. RESULTS: Qualitative analysis identified five themes: i) Maintaining Relationships with Health Professionals, ii) Altered Information Seeking Strategies, iii) More Autonomous Decision Making, iv) Diminished Self-Care and Behaviour Change, and v) Shifted Priorities. Respondents reported disruptions to, and uncertainties within, the healthcare system that precipitated adverse effects upon their ability to manage endometriosis and mental health. CONCLUSIONS: These findings suggest that for many, COVID-19-related disruptions to the healthcare system and social isolation adversely impacted their endometriosis self-management. Targeted interventions are needed to address the consequences of these, including providing reliable information to support informed decision-making regarding endometriosis self-management, and assisting with mental health challenges arising from COVID-19-related social isolation.