Belza Christina, Cohen Eyal, Orkin Julia, Fayed Nora, Major Nathalie, Quartarone Samantha, Moretti Myla
Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
Edwin S.H. Leong Centre for Healthy Children, Toronto, Ontario, Canada.
Paediatr Child Health. 2023 Jul 19;29(4):216-223. doi: 10.1093/pch/pxad040. eCollection 2024 Jul.
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.
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.
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.
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.
由于对医疗和技术的依赖，患有复杂医疗状况（CMC）儿童的家庭承担着与护理相关的巨额费用。虽然总体上已描述了对家庭的经济影响，但尚未对特定类别费用进行详细的系统探讨。我们的目的是描述CMC儿童照料者的自付费用（OOP），并确定与支出增加相关的因素。
这是一项对数据的二次观察性分析，主要照料者报告的OOP费用是在加拿大安大略省进行的一项随机对照试验的一部分。照料者完成了报告OOP成本的问卷。使用描述性统计来报告OOP费用，并进行了线性回归模型分析。
纳入了107名CMC儿童的主要照料者。参与者的年龄中位数（四分位间距）为34.5岁（30.5至40.5岁），83.2%为母亲。大多数人已婚或处于同居关系（86.9%），50.5%有工作。参与者的孩子[年龄中位数（四分位间距）为4.5岁（2.2至9.7岁）；57.9%为男性]最常见的主要诊断为神经/神经肌肉疾病（46.1%），88%使用医疗技术。每年的OOP总费用为8639加元（四分位间距 = 4661至31326加元），其中与儿童照料/家务、就医交通、住院和设备成本相关的费用较高。未发现与OOP费用可能性增加相关的因素。P值<0.05被认为具有统计学意义。
CMC儿童的照料者因照料孩子产生了巨额OOP费用，导致经济负担。未来探讨对照料者生产力、就业的经济影响以及确定减轻OOP费用的资源，对这一患者群体至关重要。
