Dataset Information

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

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.

SUBMITTER: Missmer SA

PROVIDER: S-EPMC9047767 | biostudies-literature | 2022 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Missmer Stacey A SA Tu Frank F Soliman Ahmed M AM Chiuve Stephanie S Cross Sarah S Eichner Samantha S Antunez Flores Oscar O Horne Andrew A Schneider Beth B As-Sanie Sawsan S

BMJ open 20220427 4

<h4>Objectives</h4>To examine women's perceptions of endometriosis-associated disease burden and its impact on life decisions and goal attainment.<h4>Design</h4>An anonymous online survey was distributed in October 2018 through the social media network MyEndometriosisTeam.com.<h4>Participants</h4>Women aged 19 years and older living in several English-speaking countries who self-identified as having endometriosis.<h4>Outcome measures</h4>Patients' perspectives on how endometriosis has affected t ...[more]

PMID: 35477879

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Project description:BACKGROUND: Evaluating collaborative community health promotion initiatives presents unique challenges, including engaging community members and other stakeholders in the evaluation process, and measuring the attainment of goals at the collective community level. Goal Attainment Scaling (GAS) is a versatile, under-utilized evaluation tool adaptable to a wide range of situations. GAS actively involves all partners in the evaluation process and has many benefits when used in community health settings. METHODS: The purpose of this paper is to describe the use of GAS as a potential means of measuring progress and outcomes in community health promotion and community development projects. GAS methodology was used in a local community of seniors (n = 2500; mean age = 76 +/- 8.06 SD; 77% female, 23% male) to a) collaboratively set health promotion and community partnership goals and b) objectively measure the degree of achievement, over- or under-achievement of the established health promotion goals. Goal attainment was measured in a variety of areas including operationalizing a health promotion centre in a local mall, developing a sustainable mechanism for recruiting and training volunteers to operate the health promotion centre, and developing and implementing community health education programs. Goal attainment was evaluated at 3 monthly intervals for one year, then re-evaluated again at year 2. RESULTS: GAS was found to be a feasible and responsive method of measuring community health promotion and community development progress. All project goals were achieved at one year or sooner. The overall GAS score for the total health promotion project increased from 16.02 at baseline (sum of scale scores = -30, average scale score = -2) to 54.53 at one year (sum of scale scores = +4, average scale score = +0.27) showing project goals were achieved above the expected level. With GAS methodology an amalgamated score of 50 represents the achievement of goals at the expected level. CONCLUSION: GAS provides a "participatory", flexible evaluation approach that involves community members, research partners and other stakeholders in the evaluation process. GAS was found to be "user-friendly" and readily understandable by seniors and other community partners not familiar with program evaluation.

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Dataset Information

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

Objectives

Design

Participants

Outcome measures

Results

Conclusions

Publications

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

Similar Datasets

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