Self-Management, Self-Efficacy, and Health-Related Quality of Life in Children With Chronic Illness and Medical Complexity

Abstract

Introduction: 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.

Method: 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).

Results: 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.

Discussion: 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.

Keywords: Chronic illness; health-related quality of life; medical complexity; self-efficacy; self-management.