Patients’ and relatives’ perspectives on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis: findings from a national survey

Marianne Omtvedt, Elisabeth Bean, E. Bean, Kirsten Hald, Elisabeth Raasholm Larby, Guri B Majak, Tina Tellum
BMC women's health · 2022 · vol. 22(1) , pp. 219 · doi:10.1186/s12905-022-01798-8 · PMID:35689259 · W4281644523
article OA: gold CC0 ⤵ 14 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

A national survey of 938 patients found that improved information, long-term plans, partner integration, and multidisciplinary care with psychologists, nutritionists, physiotherapists, and sex therapists are crucial for endometriosis and adenomyosis patients.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This national mixed-method survey studied patients with self-reported endometriosis and/or adenomyosis and their relatives in Norway, using an online questionnaire co-developed with the Norwegian Patients’ Endometriosis Society and gynecologists and distributed in May 2021 to members. Among 938 respondents, the main concerns about “best possible care” were better patient information, long-term therapeutic plans, and integrating partners into care, with strong endorsement of multidisciplinary services including psychologists (89%), nutritionists (86%), physiotherapists (85%), and sex therapists (78%), alongside near-universal importance placed on research and quality assurance by an endometriosis center. Free-text qualitative analysis highlighted needs for up-to-date, easily accessible information, meeting competent professionals, and being listened to/treated seriously. A key limitation is that the study relied on self-reported diagnoses and recruitment through a patient society, which may affect representativeness. This paper is centrally about endometriosis and adenomyosis — it surveys patients’ and relatives’ perspectives to inform centralized, multidisciplinary endometriosis care and explicitly includes adenomyosis in its stated focus and service priorities.

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Abstract

BACKGROUND: Endometriosis and adenomyosis are common benign conditions compromising both physical and psychological health, with a negative impact on quality of life. This survey aimed to establish what the users' perspectives are on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis in Norway. METHODS: An electronic questionnaire was developed in collaboration between the Norwegian Patient's Endometriosis Society (NPES) and gynecologists with special interest in endometriosis and adenomyosis. The questionnaire was distributed digitally to the members of NPES in May 2021. RESULTS: 938 participants answered the questionnaire. Better patient information, long term therapeutic plans and integration of their partners into their care were the main concerns. Multidisciplinary care was a key issue for the majority, with (n = 775) 89% stating a need for a consultation with a psychologist, (n = 744) 86% at least one consultation with a nutritionist, (n = 733) 85% a physiotherapist, and (n = 676) 78% needing a sex therapist and (n = 935) 99,7% consider research and (n = 934) 99,8% consider quality assurance initiated by the endometriosis center to be important. The qualitative analysis of free text answers revealed a great need for updated and easily accessible information, meeting competent health care professionals and being taken seriously/listened to. CONCLUSIONS: This survey shows similar perceptions and a high level of agreement regarding their needs amongst people with endometriosis and/or adenomyosis. This survey supports recommendations by the experts that endometriosis/adenomyosis care should be centralized in specialized, multidisciplinary centers. The results of the present work will be valuable for the future planning and development of a multidisciplinary endometriosis center.

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Condition tags

mesh:D004715endometriosisadenomyosis

MeSH descriptors

Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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.

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