72 Patient decision aids for endometriosis in the digital era: a scoping review of existing tools, gaps, and opportunities for shared decision-making
Year: 2026
Type: conference-paper
Abstract: Background Endometriosis is a chronic disease affecting ~10% of reproductive-age women, marked by complex symptoms and no single gold standard treatment. Shared Decision-Making (SDM), supported by Patient Decision Aids (PtDAs), helps patients navigate options aligned with their values. Despite growing interest in digital PtDAs for improved accessibility and engagement, their availability in endometriosis remains unclear. The objective of this scoping review was to systematically map the literature on digital PtDAs, describe their features, and identify gaps to guide future research. Methods Following Joanna Briggs Institute methodology and PRISMA-ScR guidelines, a 3-step search was conducted across 6 databases and grey literature. Eligible resources were digital PtDAs for women aged 18–49 with endometriosis that incorporated the core elements required for decision-support: a clear decision, options with benefits/harms, and value clarification. 2 reviewers independently screened and extracted data. To capture emerging generative AI contributions, we created 5 additional PtDAs by prompting distinct conversational AI platforms. Data extraction focused on characteristics, content, development processes, and evaluation, using IPDAS minimal criteria and the TIDieR checklist. Patient partners helped refine research questions and interpret findings. Results Among 1,525 screened records, 5 digital PtDAs met inclusion criteria, each from a different country. Reporting on development processes and evaluation was scarce; only one tool had a related publication (a conference abstract), and none provided sufficient detail for TIDieR assessment. Content centered on medical and surgical options, with little coverage of non-medical or complementary strategies. Tools commonly included option summaries, pros and cons, reflective questions, and SDM checklists. Fulfillment of IPDAS qualifying certification criteria differed between tools. AI-generated PtDAs resembled existing tools but more consistently incorporated lifestyle and complementary medicine approaches. Discussion The digital PtDA landscape for endometriosis is limited and inconsistently reported. While existing tools meet basic criteria, limited transparency in development and evaluation restricts reproducibility and clinical implementation. Gaps around lifestyle and complementary medicine content may indicate misalignment with patients’ lived experiences. Strengthening reporting standards, leveraging patient involvement and emerging AI technologies may improve future digital PtDAs for endometriosis.
Institutions: Centre universitaire de médecine générale et santé publique, Lausanne, University of Lausanne, Lyon 1 Université, Inserm, Hospices Civils de Lyon, Research on healthcare performance, Centre Hospitalier Universitaire Vaudois, Dartmouth College, Dartmouth Institute for Health Policy and Clinical Practice
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
OpenAlex ID: W7225896341
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