Out-of-pocket expenses reported by families of children with medical complexity

Christina Belza; Eyal Cohen; Julia Orkin; Nora Fayed; Nathalie Major; Samantha Quartarone; Myla Moretti

doi:10.1093/pch/pxad040

Out-of-pocket expenses reported by families of children with medical complexity

Paediatr Child Health. 2023 Jul 19;29(4):216-223. doi: 10.1093/pch/pxad040. eCollection 2024 Jul.

Authors

Christina Belza^{1

2

3}, Eyal Cohen^{1

2

4

5}, Julia Orkin^{1

4

5}, Nora Fayed⁶, Nathalie Major⁷, Samantha Quartarone¹, Myla Moretti^{1

8

9}

Affiliations

¹ Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
² Edwin S.H. Leong Centre for Healthy Children, Toronto, Ontario, Canada.
³ Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁴ Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁵ Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
⁶ School of Rehabilitation Therapy, Queen's University, Kingston, Ontario, Canada.
⁷ Division of Pediatric Medicine, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
⁸ Ontario Child Health Support Unit, The Hospital for Sick Children, Toronto, Ontario, Canada.
⁹ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.

Abstract

Objectives: Due to their medical and technology dependence, families of children with medical complexity (CMC) have significant costs associated with care. Financial impact on families in general have been described, but detailed exploration of expenses in specific categories has not been systematically explored. Our objective was to describe out-of-pocket (OOP) expenses incurred by caregivers of CMC and to determine factors associated with increased expenditures.

Methods: This is a secondary observational analysis of data primary caregiver-reported OOP expenses as part of a randomized control trial conducted in Ontario, Canada. Caregivers completed questionnaires reporting OOP costs. Descriptive statistics were utilized to report OOP expenses and a linear regression model was conducted.

Results: 107 primary caregivers of CMC were included. The median (IQR) age of participants was 34.5 years (30.5 to 40.5) and 83.2% identified as the mother. The majority were married or common-law (86.9%) and 50.5% were employed. The participant's children [median (IQR) age 4.5 (2.2 to 9.7); 57.9% male] most commonly had a neurological/neuromuscular primary diagnosis (46.1%) and 88% utilized medical technology. Total OOP expenses were $8,639 CDN annually (IQR = $4,661 to $31,326) with substantial expenses related to childcare/homemaking, travel to appointments, hospitalizations, and device costs. No factors associated with greater likelihood of OOP expenses were identified. A P-value of <0.05 was considered significant.

Conclusion: Caregivers of CMC incur significant OOP expenses related to the care of their children resulting in financial burden. Future exploration of the financial impact on caregiver productivity, employment, and identification of resources to mitigate OOP expenses will be important for this patient population.

Keywords: Children with medical complexity; Out; Paediatrics; of; pocket.

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