Leaving the country for care: A descriptive study of those seeking care for suspected or confirmed endometriosis outside of Canada

OBJECTIVE: Canadians with endometriosis experience significant delays in access to care within our national health care system. This study aims to discern the factors leading individuals with suspected and/or confirmed endometriosis to seek care outside of Canada. METHODS: An anonymous electronic questionnaire was shared online through social media. Respondents were required to be at least 18 years of age, have suspected and/or confirmed endometriosis, Canadian citizens or permanent residents, and have considered/obtained care abroad for endometriosis. RESULTS: There were 559 survey responses, of which 348 responses were included. Most respondents were aged 25-44 (83.6%, n = 291), identified as White (83.3%, n = 290), and had an education of bachelor's degrees or above (56.6%, n = 197). One-third of respondents (33.1%, n = 115) reported household incomes of ≥ $150,000 CAD. Most respondents (70.7%, n = 246) sought surgical endometriosis care abroad after being dissatisfied or very dissatisfied with their current care in Canada (80.5%, n = 280). Ninety-six respondents (27.6%) received surgical care abroad, mainly travelling to Romania (n = 34, 35.4%), and the USA (n = 32, 33.3%). Main reasons for seeking surgical care abroad included long wait times (n = 79, 82.3%) and belief that Canadian surgeons lack sufficient expertise (n = 67, 69.8%). Most respondents (89.6%, n = 86) were satisfied with their care abroad. Average direct and indirect costs for surgical care abroad were $24 395.55 CAD and $7211.11 CAD per respondent, respectively. CONCLUSIONS: Canadian patients are seeking care abroad, most often due to delays in care and a belief that there is a lack of available skills to appropriately manage this disease. Results can inform Canadian health policies to decrease barriers to treatment and improve access to care.