Title: 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
Version: 2 Date: 23 Apr 2022
Reviewer:  Paolo Vercellini
Reviewer's report:
Omtvedt and coworkers conducted a survey among members of the Norwegian Patient’s
Endometriosis Society (NPES) with the objective of defining patients and relatives’ preferences
and expectations regarding the best possible care within a multidisciplinary center for
endometriosis and adenomyosis.
A total of 938 participants (873 with a self-reported diagnosis of endometriosis and/or
adenomyosis) replied to an electronic questionnaire developed by NPES and gynecologists
specializing in endometriosis and adenomyosis
The main patients’ and relatives’ preferences/expectations were better information, long-term
therapeutic plans, and integration of their partners into their care.
The topic is important and timely, the study well-conducted, the data correctly presented, and
the manuscript clearly and concisely written. The methodological drawbacks associated with
this type of study, including a potential selection bias and the generalizability of the results, are
adequately addressed.
It seems crucial to convey the message that complete and detailed evidence-based information
constitutes the basis for a true patient-centered care and shared-decision making also for women
with endometriosis. Moreover, this means patient respect and should be a cornerstone of medical
practice in general.
In this regard, it would be interesting to address in the Discussion section whether, based
on available data, similarities and differences exist in priorities, preferences, and expectations
regarding quality of care between patients with endometriosis and patients with other chronic
disorders.
Moreover, the authors should cite and comment also the study by Lukas I et al. Satisfaction with
medical support in women with endometriosis. PLoS One. 2018 Nov 29;13(11):e0208023. In
their report, the authors concluded “Altogether, 54.6% of the study participants were satisfied
with medical support and 45.4% were not. Feeling adequately informed, taking women’s mental
troubles seriously and supporting women in handling their pain were significantly associated
with satisfaction”. In addition, Lukas et al. found adequate information to be the most distinctive
indicator for patient satisfaction with medical support. Therefore, these findings seem in line
with those here presented by Omtvedt and coworkers (see also page 10, lines 220-221).
In the opinion of this reviewer, one important issue that should have been included in the
questionnaire is whether and how much do the participants agree on the importance that in
multidisciplinary referral center all possible treatments should be equally available for any
clinical conditions. In other words, for the participants’ values, preferences, and needs to be
respected, no imbalance should exist in expertise and availability regarding effective and safe
medical versus surgical treatments in women with pain symptoms or between surgery and ART
for women with infertility. Patients and relative should have the right to know the level of
expertise offered in each therapeutic field by any multidisciplinary endometriosis referral center.
Please comment.
About two thirds of the participants agreed that consultations can also be carried out as
video consultations (page 9, lines 209-211). This is interesting and could partially aid in
overcoming the issue of the limited available resources that could interfere with the development
of a multidisciplinary approach (page 13, lines 292-296). As an example, psychological
consultations and support group meetings could be organized online, and the organization of
video consultations could facilitate the conduction of follow-up by the same doctor.
Interesting is also the finding that less than half of the patients “reported that just one (n = 372;
44%) or that a few (n = 385; 45%) sessions with a sex therapist would be sufficient to meet
their needs” and that only “a minority (n = 99; 11,6%) stated to need a more long-term follow-
up” (page 10, lines 234-237). This may appear somewhat unexpected, because deep dyspareunia
is the symptom most difficult to treat and potentially associated with major consequences on
self-esteem and couple intimacy. Could the authors add a comment?
Nearly all participants considered important that research is undertaken in multidisciplinary
referral centers and expressed commitment to contribute to this (page 11, lines 259-261). This
is reassuring, but it would have been interesting to know to what extent the participants would
agree to participate specifically in randomized controlled trials. The lack of adequately designed
RCTs constitutes a major problem in several areas of endometriosis management. Unfortunately,
in addition to the well-known general difficulties in conducting RCTs, patients do not seem to be
always easily available in participating in this type of study (see Vercellini et al. BMC Womens
Health. 2015 Oct 22;15:89. doi: 10.1186/s12905-015-0248-4).
The fact that nearly all participants highlighted the need for a long-term treatment plan is very
important. When also all gynecologists caring for women with endometriosis will agree on this
point, one of major problems related to management of this disease could be overcome.
“Many patients feel that they are left on their own, without easily accessible help from
competent health care providers” (page 13, lines 308-309). Acknowledging psychological
distress and supporting women in handling their symptoms not only positively affect patient
satisfaction with medical support (PLoS One. 2018;13(11):e0208023), but should be considered
an indispensable part of treatment. A multidisciplinary referral center should systematically
pursue the psychological support of women with endometriosis through listening, explanation,
and reassurance. All too often women are scared regarding their overall prognosis, including
pain symptoms, infertility, and type of surgical procedures needed.
This reviewer suggests briefly developing also the concept of the “burden of
treatment” (avoiding excessive or uselessly costly diagnostic procedures; reserving the least
tolerated and most expensive drugs only for non-responders to first-line medications; suggesting
complex and risky surgical procedures only when clearly supported by indisputable evidence;
planning cost-effective and reasonable follow-up procedures; etc.) in addition to the “burden of
disease”. A multidisciplinary referral center should pursue a “minimally invasive” endometriosis
therapeutic approach with the specific aim of reducing the burden of treatment. It is a pity that
this aspect has not been included in the electronic questionnaire but, if the authors agree, it could
be suggested for future studies of this type.
The questionnaire did not address the potential issue of  conflicts of interest. Do the authors
believe that it could have been of interest to assess whether patients and relatives agree on
the need to obtain information of financial conflicts of interest of physicians working in a
multidisciplinary endometriosis referral center? This is a debated issue in general medicine and
has to do with the patients' right to know whether the indications provided could theoretically
be influenced by economic implications.
Minor comment
At page 7, line 147, the authors write “a total of 938 participants answered the questionnaire
within five days. 873 women with a self-reported diagnosis of endometriosis and/or
adenomyosis and relatives participated”. This should mean that the remaining 65 participants
were relatives, but it is not formally stated here. Please, specify.