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Keywords: endometriosis; community-based participatory research; patient-centered care; evidence-based medicine; healt services; health policy Corresponding author: Catherine Allaire, callaire2@cw.bc.ca * See Acknowledgements. Disclosures: This work is supported by the University of British Columbia Office of Community Engagement (CUES_Exp_023). The authors report potential conflicts of interest outside of this wo Dr. Allen reports personal fees from AbbVie. Dr. Belland reports personal fees from AbbVie, Allergan, Bayer, and Olympus and grants from AbbVie and Allergan. Dr. Kroft reports personal fees from AbbVie, Allergan, Bayer, and Hologic. Dr. Maksymowicz reports personal fees from AbbVie and Hologic. Dr. Randle repor personal fees from Allergan and Hologic. Dr. Singh reports perso fees and grants from AbbVie and Bayer. Dr. Wessels reports a licensing agreement and patent PCT/CA2014/000742 pending w Exeltis. Dr. Yong reports a nonfinancial letter of support from Abb for a grant application currently under review. Dr. Allaire reports personal fees from AbbVie and Allergan. All authors have indicated that they meet the journal’s requireme for authorship. Received on April 6, 2020 Accepted on May 13, 2020 Available online on June 2, 2020 88 � JANUARY JOGC JANVIER 2021 BRIEF COMMUNICATION � BR�EVES Endometriosis in Canada: It Is Time for Collaboration to Advance Patient- Oriented, Evidence-Based Policy, Care, and Research K.J. Wahl Kate J. Wahl, MSc;1 Paul J. Yong, MD, PhD;1 Philippa Bridge-Cook, PhD;2 Catherine Allaire, MD1 on behalf of EndoAct Canada * 1Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC 2The Endometriosis Network Canada, Toronto, ON Résumé Abstract Endometriosis is an enigmatic, painful, complex disease that affects approximately 1 million people in Canada. The disease can involve multiple organ systems, often resulting in debilitating chronic pain and infertility. Social, medical, geographic, and other factors are implicated in years-long diagnostic delays and may limit access to care. An integrated approach from bench to bedside to community is urgently required. A pan-Canadian collaboration among patients, clinicians and researchers will improve endometriosis awareness, provide best practices, and link research across Canada. h rk. ts nal ith Vie nts L’endom�etriose est une maladie �enigmatique, douloureuse et complexe qui touche environ 1 million de personnes au Canada. La maladie peut atteindre de multiples organes. Elle est souvent source de douleurs chroniques d�ebilitantes et d’infertilit�e. Des facteurs sociaux, m�edicaux, g�eographiques et autres entrent en compte dans les ann�ees qu’il faut parfois pour poser le diagnostic et peuvent limiter l’acc�es aux soins. Il est urgent de trouver une strat�egie int�egr�ee allant du banc d’essai au chevet �a la communaut�e. La collaboration pancanadienne entre patientes, cliniciens et chercheurs contribuera �a la sensibilisation �a l’endom�etriose, indiquera les pratiques exemplaires et reliera la recherche d’un bout �a l’autre du pays. © 2020 The Society of Obstetricians and Gynaecologists of Canada/La Société des obstétriciens et gynécologues du Canada. Published by Elsevier Inc. All rights reserved. J Obstet Gynaecol Can 2021;43(1):88−90 https://doi.org/10.1016/j.jogc.2020.05.009 Endometriosis is a complex disease that affects approx-imately 1 million people in Canada. There is neither a definitive cause nor a known cure for endometriosis. The variable nature of the disease poses a therapeutic challenge to both patients and clinicians. Endometriosis also repre- sents an important societal burden, carrying an estimated annual cost of $1.8 billion.1 The objectives of this com- mentary are to offer current perspectives on the problem of endometriosis in Canada and to propose a collabora- tive approach to identifying evidence-informed, patient- oriented solutions. Those of us with lived experience of endometriosis (P.B.C., M.A., L.P.) understand the challenges of having this disease in Canada, and we are not alone. Every year, The https://doi.org/10.1016/j.jogc.2020.05.009 mailto:callaire2@cw.bc.ca Endometriosis in Canada Endometriosis Network Canada, a patient-led, not-for- profit organization, interacts with thousands of people who describe diagnostic delays that can exceed 20 years and lead to progressive physical disability and significant mental health challenges. Many have had their symp- toms dismissed by loved ones and health professionals as “just part of being a woman,” driving them towards isolation and hopelessness and even leading some to consider suicide. After diagnosis, effective treatment is not easy to access for multiple reasons. Many regions of Canada have few or no clinicians trained to treat the advanced stages of endome- triosis or to identify and treat contributors to complex pain symptoms. Those living in underserviced areas without resources to travel to visit experts can suffer severe conse- quences, including debilitating daily pain, or radical surgery such as hysterectomy, with or without bilateral salpingo- oophorectomy, at a young age. Geographic inequalities are not the only issue; Black, Indigenous and people of colour, LGBTQ2S+ individuals, and members of already margin- alized groups often face additional barriers to optimal care. From across Canada, we repeatedly hear about the losses that result from diagnostic delays and ineffective treatment: loss of social ties, loss of relationships, loss of jobs, and loss of the ability to have children. Clinicians, patients, and patients’ families are keenly aware of the inadequacies of the current system. Patients often resort to accessing care in emergency departments and may see a dozen health care providers before being diag- nosed.2 At the few Canadian tertiary endometriosis centres, we struggle to meet the need for timely care, with wait times between 3 and 9 months for an initial appoint- ment and up to another 12 months for surgery or interdis- ciplinary pain care, depending on the site. For some patients, the challenges of the Canadian system are signifi- cant enough that they seek care outside of the country. The utility of history, physical examination, and targeted imaging for endometriosis has improved greatly but is not standardized; as such, we are far from realizing an optimal diagnostic and treatment clinical pathway. We now recog- nize that the disease is not simply ectopic endometrium that mimics eutopic endometrium, but rather a complex disease with heterogeneous symptom expression and phe- notypes including superficial endometriosis, invasive deep- infiltrating endometriosis, and ovarian endometriomas. Given the significant and unique impact of the disease on the physical and mental well-being of patients, as well as the potential iatrogenic effects of less than ideal medical care, an interdisciplinary approach and advanced surgical skill set are required.3−5 Better care and outcomes for patients with endometriosis hinge on greater understand- ing of the similarities and differences among phenotypes, as well as factors affecting individual responses to various treatments and equitable access to appropriate care. Researchers are seeking to answer questions about the dynamics of endometriosis from the cellular to the societal level. Despite our differences in focus, we agree that bio- medical, clinical, population health, and health services research on endometriosis can advance high-quality treat- ment of this disease. Unfortunately, efforts to advance endometriosis research in Canada have historically been siloed and uncoordinated. Moreover, improvements in care may be stymied by underfunding in this area; a recent search of the Canadian Institutes of Health Research Funding Decision Database showed that endometriosis- related projects received only $7.3 million in the past 20 years—just $7.30 per person estimated to be living with endometriosis in Canada today.6 Other countriesare mobilizing to take action for those liv- ing with endometriosis. In 2017, the Australian minister of health apologized for Australia’s historic neglect of people with the disease. This apology was followed by a National Action Plan for Endometriosis, with the objectives of increasing awareness of endometriosis, improving clinical management and care, and driving research. Similarly, in the United Kingdom, members of Parliament recently launched an inquiry to investigate and address the chal- lenges faced by people with endometriosis. Like their international counterparts, people with endome- triosis in Canada deserve to receive the right care in the right place and at the right time. However, there have been no policy initiatives to address the suffering of these indi- viduals. We recognize that several factors may limit capac- ity for action. As with other women’s health conditions, general awareness of endometriosis is low, and systemwide mobilization on any health issue is complicated by shared federal and provincial responsibilities for health care. We therefore appreciate new government commitments to ensure access to reproductive services and to “tackle per- sistent gaps” in women’s health research.7 Such commit- ments align with the need we have identified for pan- Canadian action on endometriosis. Given the present challenges and opportunities, we have launched EndoAct Canada: an independent collaboration of patients, clinicians, and researchers dedicated to JANUARY JOGC JANVIER 2021 � 89 BRIEF COMMUNICATION � BR�EVES catalyzing action on endometriosis, similar to what has been achieved in countries such as Australia. The specific objectives of the group are to raise awareness of endometriosis, define current gaps in care, and partner with health system decision- makers to generate the knowledge required for evidence- informed policy. This approach is centred on the principles of patient-ori- ented research described by the Canadian Institutes of Health Research (CIHR).8 A patient-oriented approach requires that people with lived experience of the disease be involved in all aspects of the work to ensure that it addresses relevant priorities and outcomes. The value of this approach for the endometriosis community is demon- strated in both the Australian example and recent work highlighting patient priorities for research in the United Kingdom and Ireland.9,10 In our collaboration, equal part- nership is formalized by co-chair positions that are held by patient and clinician experts. Moreover, a priority for our work will be to learn from people with endometriosis about their patient journeys and needs. According to the CIHR Strategy for Patient-Oriented Research, patient-oriented work should encompass “the breadth of clinical settings, health professions/disciplines, and constituent voices across Canada.”8 In the context of endometriosis, our collaboration includes people with lived experience of endometriosis, clinicians who provide care across various health settings, and researchers seeking to generate basic and applied knowledge about the disease. Given regional differences in Canadian health care systems, geographic diversity is vitally important, and we have representation from Newfoundland and Labrador, Nova Scotia, Qu�ebec, Ontario, Manitoba, Saskatchewan, Alberta, and British Columbia. Because access to care is determined by intersecting identities and experiences, the success of this patient-oriented approach will depend on building an inclusive perspective on endometriosis that reflects Canada’s multicultural character, geography and unique governmental structure. The time has come to make endometriosis a health care priority in Canada. We believe that bringing together patients, clinicians, researchers, and other stakeholders will promote the generation of relevant evidence and its inte- gration into policy and practice. We are grateful for this opportunity to introduce our patient-oriented approach to the Canadian obstetrical and gynaecological community, and we welcome insight on how to strengthen this 90 � JANUARY JOGC JANVIER 2021 endeavour. Together, we can help improve the care and quality of life of people living with endometriosis in Canada. Acknowledgements The EndoAct Canada authors are Lisa M. Allen, MD, FRCSC; Michelle Avery; Krisztina Bajzak, MD, FRCSC, MS; Liane Belland, MD, MSc; Jamie Kroft, MD, MSc, FRCSC; Nicholas Leyland, MD, MHCM, FRCSC; Sarah Maheux-Lacroix, MD, FRCSC, MSc, PhD; Anet Maksy- mowicz, MD, FRCSC; Natasha L. Orr, MSc; Laura Pencer; Elizabeth Randle, MD, FRCSC; Sukhbir S. Singh, MD, FRCSC; John A. Thiel, MSc, MD; Jocelyn M. Wessels, MSc, PhD; and Colleen Miller, PhD. The authors are grate- ful for the expertise and enthusiasm of new members who continue to join EndoAct Canada and additionally wish to thank members Nelly Faghani, PT, MCPA, and Arthur Leader, MD FRCSC, who offered inspiration and insight for the commentary. REFERENCES 1. Levy AR, Osenenko KM, Lozano-Ortega G, et al. Economic burden of surgically confirmed endometriosis in Canada. J Obstet Gynaecol Can 2011;33:830–7. 2. Dun EC, Kho KA, Morozov VV, et al. Endometriosis in adolescents. J Soc Laparoscopic Robotic Surgery 2015;19:e2015.00019. 3. Leonardi M, Lam A, Abr~ao MS, et al. Ignored because it is benign−it is time to treat endometriosis as if it were cancer. J Obstet Gynaecol Can 2020;42:507–9. 4. Allaire C, Aksoy T, Bedaiwy M, et al. An interdisciplinary approach to endometriosis-associated persistent pelvic pain. J Endometr Pelvic Pain Disord 2017;9:77–86. 5. Vilasagar S, Bougie O, Singh SS. A practical guide to the clinical evaluation of endometriosis-associated pelvic pain. J Minim Invasive Gynecol 2020;27:270–9. 6. Canadian Institutes of Health Research. Funding decisions database. Available at: http://webapps.cihr-irsc.gc.ca/decisions/p/main.html? lang=en#sort=namesort%20asc&start=0&rows=20. Accessed on February 6, 2020. 7. Prime Minister of Canada. Minister of health mandate letter. Available at: https://pm.gc.ca/en/mandate-letters/2019/12/13/minister-health- mandate-letter. Accessed on February 11, 2020. 8. Canadian Institutes of Health Research. Canada’s strategy for patient- oriented research. Available at: https://cihr-irsc.gc.ca/e/documents/ P-O_Research_Strategy-eng.pdf. Accessed on March 15, 2020. 9. Horne AW, Saunders PT, Abokhrais IM, et al. Top ten endometriosis research priorities in the UK and Ireland. Lancet 2017;389:2191–2. 10. Brady PC, Horne AW, Saunders PT, et al. Research priorities for endometriosis differ among patients, clinicians, and researchers. Am J Obstet Gynecol 2020;222:630–2. http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0001 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0001 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0001 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0002 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0002 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0003 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0003 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0003 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0003 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0004 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0004 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0004 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0005 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0005 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0005 http://webapps.cihr-irsc.gc.ca/decisions/p/main.html?lang=en#sort=namesort%20asc&start=0&rows=20 http://webapps.cihr-irsc.gc.ca/decisions/p/main.html?lang=en#sort=namesort%20asc&start=0&rows=20 http://webapps.cihr-irsc.gc.ca/decisions/p/main.html?lang=en#sort=namesort%20asc&start=0&rows=20 https://pm.gc.ca/en/mandate-letters/2019/12/13/minister-health-mandate-letter https://pm.gc.ca/en/mandate-letters/2019/12/13/minister-health-mandate-letter https://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdfhttps://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0006 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0006 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0007 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0007 http://refhub.elsevier.com/S1701-2163(20)30472-2/sbref0007 Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research Acknowledgements REFERENCES
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