Characteristics, Expectations and Needs of the Dutch Endometriosis Society Members

Yalck Roos-Eysbouts, Bianca De Bie-Rocks, Jolanda Van Dijk, Annemiek Nap, Annemiek W Nap
Gynecologic and obstetric investigation · 2015 · vol. 79(4) , pp. 234–238 · doi:10.1159/000368753 · PMID:25871893 · W1995494249
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This survey of Dutch Endometriosis Society members revealed they are highly educated women seeking information, social support, and advocacy, reporting improved quality of life after engaging with the society.

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Abstract

UNLABELLED: BACKGROUND/AIM STUDY QUESTION: Endometriosis is associated with a significant reduction in the quality of life and higher depression and anxiety rates. The Dutch Endometriosis Society (ES) was founded to increase the recognition and knowledge in patients and health care professionals, stimulate research and improve care. This study was conducted to explore the characteristics of the members and evaluate their needs and expectations. METHODS: A descriptive questionnaire-based survey was conducted among all members of the ES. The response rate was 51% (n = 571). RESULTS: ES members appear to be highly educated women with a wide variety of endometriosis-related symptoms resulting in considerable restrictions in daily life. Information transmission was considered the main aim of ES (97%), whereas 56% expected social support, and 38% expected advocacy. The majority (71%) reported an improvement in their quality of life after contact with the ES. CONCLUSION: The results of this study underline patients' primary quest for information about endometriosis. Patient support groups such as ES can fulfil a useful role in disseminating knowledge from medical professionals to those suffering a chronic illness, resulting in a greater understanding and ultimately increasing their quality of life.

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Condition tags

mesh:D004715endometriosis

MeSH descriptors

Endometriosis Health Services Needs and Demand Quality of Life Self-Help Groups Adult Endometriosis Female Health Communication Health Services Needs and Demand Humans Netherlands Patient Advocacy Quality of Life Social Support

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

References (18)

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