Characteristics, expectations and needs of the dutch endometriosis society members

Roos-Eysbouts Y, Yalck Roos-Eysbouts, Bianca De Bie-Rocks, De Bie-Rocks B, Jolanda Van Dijk, Van Dijk J, Annemiek Nap, Annemiek W Nap, Nap AW
Gynecologic and obstetric investigation · 2015 · vol. 79(4) , pp. 234–238 · doi:10.1159/000368753 · PMID:25871893 · W1995494249
Observational OA: closed CC0 ⤵ 5 in-corpus citations
View on OpenAlex View on PubMed View at publisher
⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-08 ⓘ

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.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

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.

My notes (saved in your browser only)

Condition tags

endometriosis

MeSH descriptors

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

Citation neighborhood (2-hop)

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. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (18)

Cited by (5)

Source provenance

europepmc
last seen: 2026-10-13T06:10:10.580696+00:00
openalex
last seen: 2026-06-10T17:14:06.276822+00:00
pubmed
last seen: 2026-10-08T21:15:21.500443+00:00
License: CC0 · commercial use OK