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. 2022 Apr 27;12(4):e052765.
doi: 10.1136/bmjopen-2021-052765.

Impact of endometriosis on women's life decisions and goal attainment: a cross-sectional survey of members of an online patient community

Stacey A Missmer  1   2   3 , Frank Tu  4   5 , Ahmed M Soliman  6 , Stephanie Chiuve  6 , Sarah Cross  6 , Samantha Eichner  6 , Oscar Antunez Flores  6 , Andrew Horne  7 , Beth Schneider  8 , Sawsan As-Sanie  9
Affiliations

Impact of endometriosis on women's life decisions and goal attainment: a cross-sectional survey of members of an online patient community

Stacey A Missmer et al. BMJ Open. .

Abstract

Objectives: To examine women's perceptions of endometriosis-associated disease burden and its impact on life decisions and goal attainment.

Design: An anonymous online survey was distributed in October 2018 through the social media network MyEndometriosisTeam.com.

Participants: Women aged 19 years and older living in several English-speaking countries who self-identified as having endometriosis.

Outcome measures: Patients' perspectives on how endometriosis has affected their work, education, relationships, overall life decisions and attainment of goals. Subanalyses were performed for women who identified as 'less positive about the future' (LPAF) or had 'not reached their full potential' (NRFP) due to endometriosis.

Results: 743 women completed the survey. Women reported high levels of pain when pain was at its worst (mean score, 8.9 on severity scale of 0 (no pain) to 10 (worst imaginable pain)) and most (56%, n=415) experienced pain daily. Women reported other negative experiences attributed to endometriosis, including emergency department visits (66%, n=485), multiple surgeries (55%, n=406) and prescription treatments for symptoms of endometriosis (72%, n=529). Women indicated that they believed endometriosis had a negative impact on their educational and professional achievements, social lives/relationships and overall physical health. Most women 'somewhat agreed'/'strongly agreed' that endometriosis caused them to lose time in life (81%, n=601), feel LPAF (80%, n=589) and feel they had NRFP (75%, n=556). Women who identified as LPAF or NRFP generally reported more negative experiences than those who were non-LPAF or non-NRFP.

Conclusions: Women who completed this survey reported pain and negative experiences related to endometriosis that were perceived to negatively impact major life-course decisions and attainment of goals. Greater practitioner awareness of the impact that endometriosis has on a woman's life course and the importance of meaningful dialogue with patients may be important for improving long-term management of the disease and help identify women who are most vulnerable.

Keywords: community gynaecology; gynaecology; qualitative research.

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Conflict of interest statement

Competing interests: SAM is a consultant for AbbVie, Oratel Diagnostics and Celmatix and receives research support from the National Institutes of Health, Department of Defense and Marriott Family Foundations. FFT has received research support from NICHD-NIH and NIDDK-NIH, earns royalties from UpToDate, has served as a consultant for AbbVie, Myovant, and Uroshape, and conducts sponsored research for Eximis and Dot Laboratories. AMS, SCh, SCr, SE and OAF are employees of AbbVie and may own AbbVie stock/stock options. AH has received grant funding from the UK MRC, NIHR, CSO, Wellbeing of Women, Ferring, AstraZeneca, the Charles Wolfson Charitable Trust and Standard Life. His institution has received consultancy fees from Roche Diagnostics, Nordic Pharma, Ferring and AbbVie. He is Chair of the RCOG Academic Board, ESHRE National Representative for the UK, WES Board Member and Ambassador, SEUD Board Member, Trustee and Medical Advisor to Endometriosis UK and Medical Advisor to Pelvic Pain Support Network. BS is an employee of MyHealthTeams, which received compensation for the study and conducted the research on behalf of AbbVie. SA-S earns author royalties from UpToDate and has served as a consultant for AbbVie, Myovant and Eximis.

Figures

Figure 1
Figure 1
Life-course impact of endometriosis. Women were asked to indicate how much they agreed with statements involving the impact of endometriosis on (A) educational and professional achievements, (B) social life and relationships, (C) physical well-being and (D) overall life course.
Figure 2
Figure 2
Experiences and emotions attributed to endometriosis. Respondents were asked to select which experiences related to endometriosis had the most negative impacts on their life potential. (A) Women were also asked to indicate which general negative experiences (B) and emotions (C) they had undergone because of endometriosis and what kinds of approaches they had taken to manage the impact of endometriosis (D).
See this image and copyright information in PMC

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