ABSTRACT
BACKGROUND: The impact of the COVID-19 pandemic on young people with eating disorders (EDs) and their families was profound, with surging rates of hospitalizations and referrals reported internationally. This paper provides an account of the additional health and social costs of ED care for young people living in Canada incurred during the COVID-19 pandemic, drawing attention to the available data to inform these estimates while noting gaps in data capacities to account for a full view of the ED system of care. METHODS: Three methodologies were used to capture costs: (1) provincial administrative data holdings available at the Canadian Institute of Health Information (CIHI) were used by Deloitte Access Economics to conduct analyses on costs related to hospitalizations, emergency room visits, outpatient visits with physicians and loss of well-being from being on a waitlist. These were examined across three fiscal years (April 1 to March 31, 2019-2022) to compare costs from one year before to two years after the onset of the pandemic, (2) data collected on support-based community ED organizations and, (3) costs identified by young people, caregivers and health care professionals. RESULTS: Estimates of additional health care costs and social costs arising from ED care waitlists were estimated to have increased by 21% across the two years after the onset of the pandemic and is likely to represent an underestimate of costs. Costs related to some standard ED care services (e.g. day treatment programs) and support-based community ED organizations that saw a 118% increase in services during this time, are some examples of costs not captured in the current cost estimate. CONCLUSIONS: This paper provides a first account of the additional health and social ED care costs associated with the pandemic, which indicate at minimum, a 21% increase. The results invite discussion for more investments in ED services for young people in Canada, as it is unclear if needs are expected to remain elevated. We suggest a call for a national surveillance strategy to improve data holdings to aid in managing services and informing policy. A robust strategy could open the door for much-needed, data-informed, system transformation efforts that can improve ED care for youth, families and clinicians.
The impact of the COVID-19 pandemic on young people with eating disorders and their families was profound, incurring substantial costs to youth, families, health professionals, eating disorder systems of care, and society. This study looks to draw on available data in Canada to estimate the additional health and social costs experienced during the pandemic. Using available national data holdings on eating disorder health system use, survey and discussion groups with individuals who provided or received eating disorder care during the pandemic, and data from support-based community eating disorder organizations, we attempted to capture the fulsomeness of these costs and demonstrate gaps that are likely leading to an incomplete picture. Available data across Canada on hospitalizations, emergency room visits, outpatient visits and loss of wellbeing while on a waitlist were looked at across three fiscal years (April 2019 to March 2022). Overall, an average increase of 21% of additional health care and social costs was seen across the two years after the onset of the pandemic, although this is considered an underestimation. Additional costs such as those for other standard eating disorder treatment options (e.g. day treatment programs) were not captured in these estimates. Additionally, costs related to services received through support-based community eating disorder organizations that saw a 118% increase in services during the pandemic, and private services (e.g. psychologist, dietitian) are some further examples of costs not captured in the current cost estimate. The results of this study highlight that needs and costs related to ED care rose during the pandemic and provides the first account of by how much. Given data limitations, there is a need to revisit national surveillance strategies for eating disorders to help increase accuracy of these estimates and aid in managing services and informing policies related to eating disorder care.
ABSTRACT
BACKGROUND: The onset of the COVID-19 pandemic has had an adverse impact on children, youth, and families with eating disorders (EDs). The COVID-19 pandemic exacerbated pre-existing personal and financial costs to youth, caregivers, and health professionals accessing or delivering ED services. The objectives of this mixed methods study were to (1) understand the indirect, direct medical and non-medical costs reported by youth, caregivers, and clinicians; (2) understand how the COVID-19 pandemic may have impacted these costs, and (3) explore implications of these costs with regards to barriers and resources to inform future decisions for the ED system of care. METHODS: Youth (aged 16-25 years) with lived/living experience, primary caregivers, clinicians, and decision-makers were recruited with support from various partners across Canada to complete group specific surveys. A total of 117 participants responded to the survey. From those respondents, 21 individuals volunteered to further participate in either a discussion group or individual interview to provide additional insights on costs. RESULTS: Youth and primary caregivers reported costs relating to private services, transportation and impacts of not attending school or work. Additionally, primary caregivers reported the top direct medical cost being special food or nutritional supplements (82.8%). In discussion groups, youth and caregivers elaborated further on the challenges with long waitlists and cancelled services, impact on siblings and effect on family dynamics. Clinicians and decision-makers reported increased work expectations (64.3%) and fear/isolation due to COVID-19 in the workplace (58.9%). Through discussion groups, clinicians expanded further on the toll these expectations took on their personal life. Approximately 1 in 3 health professionals reported contemplating leaving their position in 1-2 years, with greater than 60% of this group stating this is directly related to working during the pandemic. CONCLUSIONS: Findings demonstrate the need for increased support for youth and caregivers when accessing ED services both during crisis and non-crisis times. Additionally, attention must be given to acknowledging the experience of health professionals to support better retention and resource management as they continue to navigate challenges in the health care system.
The COVID-19 pandemic has had significant impacts for children, youth and families with eating disorders (EDs) and those who care for them. The objective of this study was to understand the impacts on financial and personal costs to youth, caregivers and clinicians when either accessing or delivering ED services during the pandemic. This study consisted of an online survey and discussion groups with youth (16-25 years old) with lived experience of an ED, primary caregivers, clinicians and decision-makers delivering ED services to understand the costs they experienced. Although many reported costs were financial, including direct medical costs (i.e. private therapy) and direct non-medical costs (i.e. transportation, accommodation costs), there were also significant personal costs to individuals and their families. Healthcare professionals also reported extensive challenges with resources and increased work expectations due to the pandemic context. Acknowledging the costs experienced by young people, families and healthcare professionals during the pandemic allows for the discussion of how we can better support those accessing or delivering ED services in times of crisis and non-crisis.
