JOGC

Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research

      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.

      Résumé

      L'endométriose est une maladie énigmatique, 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 débilitantes et d'infertilité. Des facteurs sociaux, médicaux, géographiques et autres entrent en compte dans les années qu'il faut parfois pour poser le diagnostic et peuvent limiter l'accès aux soins. Il est urgent de trouver une stratégie intégrée allant du banc d'essai au chevet à la communauté. La collaboration pancanadienne entre patientes, cliniciens et chercheurs contribuera à la sensibilisation à l'endométriose, indiquera les pratiques exemplaires et reliera la recherche d'un bout à l'autre du pays.

      Keywords

      Endometriosis is a complex disease that affects approximately 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 represents an important societal burden, carrying an estimated annual cost of $1.8 billion.
      • Levy AR
      • Osenenko KM
      • Lozano-Ortega G
      • et al.
      Economic burden of surgically confirmed endometriosis in Canada.
      The objectives of this commentary are to offer current perspectives on the problem of endometriosis in Canada and to propose a collaborative 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 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 symptoms 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 endometriosis 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 consequences, 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 marginalized 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 diagnosed.
      • Dun EC
      • Kho KA
      • Morozov VV
      • et al.
      Endometriosis in adolescents.
      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 appointment and up to another 12 months for surgery or interdisciplinary pain care, depending on the site. For some patients, the challenges of the Canadian system are significant 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 recognize that the disease is not simply ectopic endometrium that mimics eutopic endometrium, but rather a complex disease with heterogeneous symptom expression and phenotypes 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.
      • Leonardi M
      • Lam A
      • Abrão MS
      • et al.
      Ignored because it is benign–it is time to treat endometriosis as if it were cancer.
      • Allaire C
      • Aksoy T
      • Bedaiwy M
      • et al.
      An interdisciplinary approach to endometriosis-associated persistent pelvic pain.
      • Vilasagar S
      • Bougie O
      • Singh SS
      A practical guide to the clinical evaluation of endometriosis-associated pelvic pain.
      Better care and outcomes for patients with endometriosis hinge on greater understanding 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 biomedical, clinical, population health, and health services research on endometriosis can advance high-quality treatment 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.

      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.

      Other countries are mobilizing to take action for those living 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 challenges faced by people with endometriosis.
      Like their international counterparts, people with endometriosis 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 individuals. We recognize that several factors may limit capacity 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 persistent gaps” in women's health research.

      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.

      Such commitments 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 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-oriented research described by the Canadian Institutes of Health Research (CIHR).

      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.

      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 demonstrated in both the Australian example and recent work highlighting patient priorities for research in the United Kingdom and Ireland.
      • Horne AW
      • Saunders PT
      • Abokhrais IM
      • et al.
      Top ten endometriosis research priorities in the UK and Ireland.
      ,
      • Brady PC
      • Horne AW
      • Saunders PT
      • et al.
      Research priorities for endometriosis differ among patients, clinicians, and researchers.
      In our collaboration, equal partnership 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.”

      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.

      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, Québec, 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 integration 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 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 Maksymowicz, 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 grateful 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.

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