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; Kirsten Hald; Elisabeth Raasholm Larby; Guri B Majak; Tina Tellum

doi:10.1186/s12905-022-01798-8

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

BMC Womens Health. 2022 Jun 10;22(1):219. doi: 10.1186/s12905-022-01798-8.

Authors

Marianne Omtvedt^{1

2}, Elisabeth Bean³, Kirsten Hald⁴, Elisabeth Raasholm Larby⁵, Guri B Majak⁴, Tina Tellum^{4

6}

Affiliations

¹ Department of Gynecology, Oslo University Hospital, Nydalen, P. O. BOX 4950, 0424, Oslo, Norway. maromt@ous-hf.no.
² Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway. maromt@ous-hf.no.
³ Institute for Women's Health, University College London Hospitals, London, UK.
⁴ Department of Gynecology, Oslo University Hospital, Nydalen, P. O. BOX 4950, 0424, Oslo, Norway.
⁵ Norwegian Patient's Endometriosis Society, Patient and Leader of the Society, Halden, Norway.
⁶ Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.

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.

Keywords: Adenomyosis; Centralized endometriosis center; Endometriosis; Multidisciplinary care; Patient-centeredness; Quality of care; Women’s health.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adenomyosis* / therapy
Endometriosis* / therapy
Female
Humans
Norway
Quality of Life
Surveys and Questionnaires