Women's experiences of the diagnostic journey in uterine adenomyosis: a scoping review protocol

Uterine adenomyosis is a benign gynaecological disease that causes physical and psychological problems, impacting on relationships. It is poorly understood and consequently may be diagnosed late. This protocol describes the process of conducting a systematic scoping review to retrieve and describe literature examining the daily experience and impact of living with uterine adenomyosis. It will explore the journey to diagnosis (and perceptions of what this process is like); identify the main concepts currently used in the literature and highlight gaps in knowledge for future research in relevant populations.

Using the Joanna Briggs Institute methodology, the population-concept-context approach is used to form clear review questions. A three-phase search strategy will locate published and unpublished evidence from multiple sources. All articles reporting on the personal experiences of women diagnosed with uterine adenomyosis will be considered. Findings from qualitative, quantitative and mixed-method study designs from all settings will be included, not limited by geography but restricted to English. Documents will be screened by the primary researcher, supported by university supervisors. Search outputs will be presented using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 flow diagram. No formal quality appraisal will be conducted. Review findings will be descriptively collated and reported consistent with the Scoping Review Extension of the PRISMA checklist. Patient and public involvement engagement reflected a positive response for the project that this protocol supports.

As primary data will not be collected, formal ethical approval is not required. Prepared as part of a professional doctorate thesis, the findings of this study will be disseminated via peer-reviewed publications, conference presentations, support groups and social media networks.