Department of Pediatrics (A Vasan, CC Kenyon, and AG Fiks), Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pa; PolicyLab and Center for Pediatric Clinical Effectiveness (A Vasan, CC Kenyon, and AG Fiks), Children's Hospital of Philadelphia, Pa; Leonard Davis Institute of Health Economics (A Vasan, AS Venkataramani, CC Kenyon, and AG Fiks), University of Pennsylvania, Philadelphia, Pa.
Department of Health Care Policy (MA Kyle), Harvard Medical School and Dana Farber Cancer Institute, Boston, Mass.
Acad Pediatr. 2023 Nov-Dec;23(8):1526-1534. doi: 10.1016/j.acap.2023.03.002. Epub 2023 Mar 12.
In the United States, caregivers of children and youth with special health care needs (CYSHCN) must navigate complex, inefficient health care and insurance systems to access medical care. We assessed for sociodemographic inequities in time spent coordinating care for CYSHCN and examined the association between time spent coordinating care and forgone medical care.
This cross-sectional study used data from the 2018-2020 National Survey of Children's Health, which included 102,740 children across all 50 states. We described the time spent coordinating care for children with less complex special health care needs (SHCN) (managed through medications) and more complex SHCN (resulting in functional limitations or requiring specialized therapies). We examined race-, ethnicity-, income-, and insurance-based differences in time spent coordinating care among CYSHCN and used multivariable logistic regression to examine the association between time spent coordinating care and forgone medical care.
Over 40% of caregivers of children with more complex SHCN reported spending time coordinating their children's care each week. CYSHCN whose caregivers spent ≥ 5 h/wk on care coordination were disproportionately Hispanic, low-income, and publicly insured or uninsured. Increased time spent coordinating care was associated with an increasing probability of forgone medical care: 6.7% for children whose caregivers spent no weekly time coordinating care versus 9.4% for< 1 hour; 11.4% for 1 to 4 hours; and 15.8% for ≥ 5 hours.
Reducing time spent coordinating care and providing additional support to low-income and minoritized caregivers may be beneficial for pediatric payers, policymakers, and health systems aiming to promote equitable access to health care for CYSHCN.
在美国，儿童和青少年特殊医疗需求（CYSHCN）的照顾者必须在复杂、低效的医疗保健和保险系统中寻找医疗服务。我们评估了 CYSHCN 照顾者在协调护理方面的社会人口不公平现象，并研究了协调护理时间与放弃医疗之间的关联。
本横断面研究使用了 2018-2020 年全国儿童健康调查的数据，该调查包括来自全美 50 个州的 102740 名儿童。我们描述了患有较少复杂特殊医疗需求（通过药物治疗管理）和更复杂特殊医疗需求（导致功能受限或需要专门治疗）的儿童的照顾者在协调护理方面花费的时间。我们检查了 CYSHCN 中基于种族、族裔、收入和保险的协调护理时间差异，并使用多变量逻辑回归来研究协调护理时间与放弃医疗之间的关联。
超过 40%的患有更复杂特殊医疗需求的儿童照顾者报告每周花费时间协调他们孩子的护理。每周在护理协调上花费≥5 小时的 CYSHCN 中，西班牙裔、低收入、公共保险或无保险的比例不成比例。增加协调护理时间与放弃医疗的概率增加相关：每周不花时间协调护理的儿童为 6.7%，每周花费 1 小时以下的为 9.4%，每周花费 1 至 4 小时的为 11.4%，每周花费≥5 小时的为 15.8%。
减少协调护理时间并为低收入和少数族裔照顾者提供额外支持，可能对儿科支付者、政策制定者和医疗保健系统有益，旨在促进 CYSHCN 公平获得医疗保健。
