In this survey, we identified patient and family perspectives on the best possible care in terms of multidisciplinary management of adenomyosis and endometriosis for the potential development of an endometriosis center. The survey also provided new insights into important aspects of patient-centred care as experienced by this group of patients.
An important and central conclusion of this survey is the great need for more, better provided, better updated and quality-assured information for both patients and their relatives. All channels of information provision were considered important, possibly depending on the stage of diagnosis, treatment or follow-up. Based on the responses we received, patients seemed to perceive information as central to enabling them to take an active role and to adhere to treatment, which is an important factor in shared decision-making and real decision-making. patient-centered care. These results are in agreement with the study by Lukas et al. who found that providing adequate information was strongly associated with patient satisfaction .
Another important finding was that almost all participants emphasized the need for a long-term treatment plan. This finding was underscored by the pattern of responses indicating lack of information about long-term management of endometriosis and lack of follow-up, especially after surgery. Chapon et al. stated in their review that it is “time for a paradigm shift” on the management of endometriosis. First, endometriosis should be considered a chronic inflammatory disease and therefore efforts should be made to optimize the management plan throughout an individual’s life, focusing more on patient symptoms, their perspectives and their “life of endometriosis” .
In the same review, the authors stated that “a multidisciplinary approach should be the current standard”, with specialized referral centers being the gold standard. . The responses to our survey confirm the need for a multidisciplinary approach, including a physiotherapist, psychologist, nutritionist, sex therapist and help with necessary lifestyle changes. Prompt diagnosis, knowledgeable endometriosis healthcare professionals, and up-to-date information were also emphasized. The absence of these parameters is likely to alter the optimal management of these patients. On the one hand, the employment of several disciplines is costly and therefore impossible for many units. On the other hand, it was emphasized by the patients that in many cases a single or a few consultations would have a significant impact on their care. A reorganization and effectivization of care could eventually free up resources without additional costs to be able to respond to the relevant aspects of patient needs. Other measures, such as patient support groups, require a relatively low level of resources with a large potential impact, and more effort to organize and study the relevance of this should be undertaken. The fact that around two-thirds of participants agreed that consultations can also be conducted as video consultations is a particularly interesting finding in this regard. The use of video consultations could help overcome the problem of limited resources interfering with the development of a multidisciplinary approach. For example, psychological consultations and support group meetings could be organized online, and this could also facilitate the continuity of doctors during follow-up.
An important aspect of a multidisciplinary center is to have the clinical expertise, but also to lead research in the field . Almost all participants stressed the importance for the endometriosis center to conduct research and ensure the quality of their results. Survey indicates patients are more than willing to complete questionnaires about their health before and after treatments and during follow-up, which can be used to assess improvement in patient-centered care and management of endometriosis . These results are reassuring, however, we have not explored the willingness to participate in randomized controlled trials which are very important but may struggle to recruit patients with endometriosis. .
Another important finding was responses indicating the lack of integrated care that provides continuity between different healthcare professionals, particularly before getting a diagnosis and after surgery. Many patients feel left on their own, without readily available help from knowledgeable healthcare providers. Recognizing psychological distress and helping women manage their symptoms not only positively affects patient satisfaction with medical support , but should be considered an indispensable part of the treatment. A multidisciplinary reference center must systematically pursue the psychological support of women with endometriosis through listening, explanation and reassurance. Too often, women are afraid of their overall prognosis, including pain symptoms, fertility, and the type of surgeries needed.
Since endometriosis and adenomyosis are very common, a single multidisciplinary center cannot treat all patients with endometriosis and/or adenomyosis. Therefore, efforts should be made to strengthen the overall level of competence for the management of endometriosis and adenomyosis nationwide. This can be facilitated by the development of interdisciplinary communication and integrated patient care between an endometriosis center and referring healthcare professionals.
Although the main objective of this survey was to describe perspectives on the best possible care in terms of the development of a multidisciplinary center for adenomyosis and endometriosis, the responses to this survey indicate that patients with endometriosis and adenomyosis need more than effective and safe care. One main area of focus has emerged that should receive particular attention, such as respect for and trust in patients, which in the ECQ is tagged under “respect for patient values, preferences and needs” , seems to be an unmet need. This finding is also consistent with a systematic review on patient-centeredness in endometriosis care . However, this also seems to be valid for other chronic diseases. In a qualitative study interviewing rheumatoid arthritis stakeholders, Barber et al.  made similar findings with respect to needs and preferences, where multidisciplinary care and respect for patients were essential. Respect for the patient must be a cornerstone of medical practice in general and the specific training of health professionals caring for this group of patients must therefore be a priority.
For future research, it would also be relevant to investigate possible discrepancies between self-reported patient-centeredness and healthcare professionals’ beliefs, and to investigate and improve markers of quality of care. . A possible marker of quality of care could be the measure of “treatment burden” . For patients with endometriosis, this could mean, for example, care that avoids excessive or unnecessary diagnostic and therapeutic procedures, reserving the least tolerated and most expensive drugs only for non-responders to first-line drugs, planning a cost-effective and reasonable follow-up, and soon . In our opinion, a multidisciplinary endometriosis referral center is much better suited to provide this to patients with endometriosis, than unorganized care. However, reducing the burden of treatment should also be a central goal for endometriosis centers and, although this aspect was not included in our survey, we suggest investigating it in future studies of this type.
The survey has several limitations, including the lack of demographic data that could have complemented both quantitative and qualitative data. The survey was administered by the Norwegian Patient Endometriosis Society using an open, anonymous questionnaire, and there is no check for the specific diagnosis of endometriosis or adenomyosis in the patients. NPES had 607 members at the time the survey was conducted, which is lower than the number of patients participating in the survey (n=938). NPES has been an active group for the past two years and their numbers are currently growing and just surpassed 1000 members in October 2021.
A strength of this survey, especially in the context of Norway, is the high number of participants and its originality with the complement of a qualitative approach with open-text responses. The question is whether the results of this national survey are transferable to other countries and cultural contexts. We believe this is the case because the symptoms and challenges described by people with endometriosis, as expressed through questionnaires and quality of life tools, were still internationally valid. [28, 29].
The survey is based on the ECQ, a questionnaire specific to endometriosis and validated, which reinforces the relevance of the data collected . At this time, there is no questionnaire specific to adenomyosis, and it could be that people with adenomyosis have other unmet needs. However, in our experience, the overlap in prevalence and symptoms between conditions is significant.
Our survey provides unique insight into patient and family perspectives on the best possible care of endometriosis management, in a population, when today a centralized, multidisciplinary endometriosis center does not yet exist. . When developing such a center, efforts should be made to include the patient as a parameter of quality of care, to continuously improve health care services for this group of patients nationwide and also to be able to learn from them. other endometriosis clinics outside Norway.