Complexity of healthcare needs of children and adolescents with complex chronic illnesses and primary caregiver burden

Abstract

Introduction. Assessing the complexity of health needs (CN) and frailty (F) in children and adolescents with complex clinical conditions (CCC) who are attended at a tertiary-level hospital enables their care to be optimized. Recognizing the overload of caregivers enables the improvement of family accompaniment. Objectives. To determine the proportion of patients with CCC in the Clinical Follow-up Clinic (CFC), evaluate their CN and F, and analyze their caregivers’ overload, establishing their relationship with CN and F. Population and methods. A prospective observational study in children under 18 years of age with at least one year of follow-up in a third-level pediatric hospital, attended at the CFC between January and March of 2023. They were classified according to CN and F, and the Zarit scale was applied to their caregivers. Results. Of the 220 patients seen, 181 (82%) had CCC. A total of 158 (87%) patients were evaluated, comprising 77.8% with low-complexity CN and 76.6% with high frailty. Of the caregivers, 54.4% presented overload, associated with lack of social support, need for rehabilitation, age over 45, and use of non-invasive monitoring. Conclusions. Most patients present CCC with CN of low-medium complexity and high frailty. More than half of caregivers experience burnout or overload.