Use of symptom-reporting tools to support endometriosis identification and management in primary care: a realist
Mayara Silveira Bianchim1,2, Rachel Joseph2, Jacky Boivin3
1School of Health Sciences, Bangor University, Bangor, UK.
Objectives:
Endometriosis affects 5-10% of women of reproductive age and is associated with chronic pain, infertility and reduced quality of life. Symptom Reporting Tools (SRTs) may support identification and management in primary care, but evidence is limited. This review investigates what works, for whom, in what contexts and why, when using SRTs for endometriosis in primary care.
Design:
A realist synthesis was used to develop programme theories on how SRTs were intended to work for women and healthcare practitioners.
Data Sources:
A purposive and iterative search was conducted across eight databases (Google Scholar, Press Reader, PubMed, Web of Science, LibrarySearch, APA PsycINFO via Ovid, Overton and Scopus) between January and April 2024 and updated in October 2025.
Eligibility Criteria:
Studies were included if they focused on women, primary care professionals or SRT developers, and addressed symptom tracking, shared decision-making and diagnostic delays. Studies from low- and middle-income countries, non-English language or lacking SRT content were excluded.
Data Extraction And Synthesis:
Initial programme theories of how SRTs were intended to work for women and healthcare practitioners were developed, tested and refined with stakeholder and patient and public involvement and engagement.
Results:
This review included 102 studies: 83 informing initial theory development and 19 were used to refine these theories, covering a total of 22 266 participants aged between 13 and 70 years. Most studies included in the synthesis were cross-sectional (n=15). Evidence showed that independent SRT use could enhance symptom awareness, health literacy, self-management and quality of life. During appointments, SRTs might support communication and personalised treatment, potentially leading to more timely diagnosis and improved outcomes. However, without guidance, SRT use could also cause distress and disempowerment. Challenges included symptom variability and limited awareness of endometriosis and SRTs in primary care. Few studies explored the experiences of those unaware their symptoms could indicate endometriosis.
Conclusion:
Our findings highlight how and why using SRTs could support endometriosis identification and care in primary care. Evidence on their role in timely diagnosis and shared decision-making was limited. Implications for practice and further research were identified.
Prospero Registration Number:
CRD42024518266.