RESUMEN
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.
RESUMEN
BACKGROUND: Endometriosis, which affects 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease with a high symptom burden and adverse socioemotional impacts. There is a need for an accessible, cost-effective, and low-burden intervention to support individuals in managing their endometriosis condition. OBJECTIVE: This study aimed to co-design and evaluate the acceptability, readability, and quality of a bank of supportive SMS text messages (EndoSMS) for individuals with endometriosis. METHODS: In phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three 3-hour web-based (Zoom, Zoom Video Communications, Inc) focus groups. The transcripts were encoded and analyzed thematically. In phase 2, consumer representatives (n=14) and health care professionals (n=9) quantitatively rated the acceptability, readability, and appropriateness of the developed text messages in a web-based survey. All the participants initially completed a background survey assessing sociodemographic and medical factors. RESULTS: Consumer representatives demonstrated diverse sociodemographic characteristics (Mage=33.29), varying in location (metropolitan vs rural or regional), employment, and relationship and educational statuses. Participants reached a consensus regarding the delivery of 4 SMS text messages per week, delivered randomly throughout the week and in one direction (ie, no reply), with customization for the time of day and use of personal names. Seven main areas of unmet need for which participants required assistance were identified, which subsequently became the topic areas for the developed SMS text messages: emotional health, social support, looking after and caring for your body, patient empowerment, interpersonal issues, general endometriosis information, and physical health. Through a web-based survey, 371 co-designed SMS text messages were highly rated by consumers and health care professionals as clear, useful, and appropriate for individuals with endometriosis. Readability indices (Flesch-Kincaid scale) indicated that the SMS text messages were accessible to individuals with a minimum of 7th grade high school education. CONCLUSIONS: On the basis of the needs and preferences of a diverse consumer representative group, we co-designed EndoSMS, a supportive SMS text message program for individuals with endometriosis. The initial evaluation of the SMS text messages by consumer representatives and health professionals suggested the high acceptability and suitability of the developed SMS text messages. Future studies should further evaluate the acceptability and effectiveness of EndoSMS in a broader population of individuals with endometriosis.