J Pediatr Health Care. 2020 Jul-Aug;34(4):304-314. doi: 10.1016/j.pedhc.2019.11.009. Epub 2020 Feb 25.
Children with chronic illnesses and medical complexity (CIMC) require frequent health-care use, thereby increasing medical care costs. We evaluated parent-child perceptions of self-management, self-efficacy, and health-related quality of life (HRQOL) in children with CIMC.
Parent-children pairs (n = 32) completed three measures before discharge from the hospital (Patient Activation Measure, Self-Efficacy Scale, and Acute Care-Pediatric Quality of Life for Children 8-12 and 13-17 years).
Parents (56.3%) and children (40.6%) reported moderate levels of self-management. HRQOL was correlated with both self-management (r = .441, p = .12) and self-efficacy (r = .464, p = .008). At least 25% to 50% reported low PedsQL subscale scores (< 70), which indicate problems with physical, emotional, social, and mental domains.
Our findings support the assessment of not only physical but also mental, emotional, and social needs in children with CIMC. We recommend development and testing strategies promoting self-management and self-efficacy to maximize HRQOL and improve health outcomes in children with CIMC.
患有慢性病和医疗复杂性（CIMC）的儿童需要频繁的医疗保健，从而增加医疗保健费用。我们评估了患有 CIMC 的儿童及其父母对自我管理、自我效能感和健康相关生活质量（HRQOL）的看法。
在出院前，家长-儿童配对（n=32）完成了三项措施（患者激活量表、自我效能量表和急性护理-儿科生活质量量表 8-12 岁和 13-17 岁）。
父母（56.3%）和儿童（40.6%）报告自我管理水平中等。HRQOL 与自我管理（r=0.441，p=0.12）和自我效能（r=0.464，p=0.008）相关。至少有 25%至 50%的儿童报告 PedsQL 子量表得分较低（<70），这表明在身体、情感、社会和心理领域存在问题。
我们的研究结果支持对患有 CIMC 的儿童进行身体、心理、情感和社会需求的评估。我们建议制定和测试促进自我管理和自我效能的策略，以最大限度地提高患有 CIMC 的儿童的 HRQOL 并改善健康结果。
