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

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12905-022-01798-8.