Identifying the dimensions and components influencing health literacy and self-care in endometriosis: a scoping review.

backgroundEndometriosis is a chronic, progressive inflammatory disorder affecting nearly 10% of reproductive-age women, yet it remains substantially underdiagnosed. Limited health literacy, inadequate access to reliable information, and reliance on variable-quality digital resources hinder timely symptom recognition and effective self-management. Understanding the determinants of health literacy and self-care is therefore essential to improving disease outcomes.

methodsThis scoping review followed the Arksey and O’Malley framework, refined by Levac et al., and reported in accordance with PRISMA-ScR guidelines. A systematic search of PubMed, Scopus, Web of Science, and Google Scholar identified English-language studies published between 2014 and 2024 related to endometriosis, health literacy, self-care, and digital health. Eligible qualitative, quantitative, and mixed-methods studies were independently screened by two reviewers, charted using a standardized extraction form, and synthesized thematically across four domains: educational, psychosocial, technological, and structural/systemic components.

resultsAcross 20 included studies, four major domains were identified. Educational findings revealed persistent gaps in disease knowledge and symptom recognition, with targeted educational programs and digital tools shown to improve literacy and support earlier diagnosis. Psychosocial findings highlighted significant emotional distress, stigma, and social isolation; family support, peer networks, and online communities played crucial roles in promoting coping and engagement in self-care. Technological findings showed that mobile health (mHealth) applications, symptom-tracking platforms, and supportive text-based interventions can enhance awareness, self-management, and patient–provider communication, despite concerns about inconsistent online information quality. Structural findings emphasized diagnostic delays, inadequate provider awareness, and limited access to specialized services; emerging digital screening tools and machine learning models show promise but require integration into broader health system reforms.

conclusionThis review indicates that effective endometriosis management requires a multidimensional approach. Limited women awareness of the disease and treatment options remains a major barrier to informed decision-making and self-care, underscoring the need for targeted educational interventions. Digital health tools, such as symptom-tracking applications, can enhance health literacy and self-management, though their impact depends on the availability of reliable resources and adequate digital health literacy. Overall, integrating educational, psychosocial, technological, and system-level strategies holds promise for improving early diagnosis, symptom management, and quality of life among women with endometriosis, particularly in resource-constrained settings.