Pediatric complex chronic and life-limiting conditions in the Basque public health system: cross-sectional prevalence study.

Abstract

Background: The survival of children and adolescents with complex chronic conditions (CCCs) and/or life-limiting or life-threatening conditions (LLCs) is increasing, while estimating their prevalence is complex and limited. This study aims to describe the prevalence of CCCs and/or LLC in children and adolescents and their profile in a European public health system.

Methods: This was a descriptive cross-sectional study of the whole pediatric population (< 19 years) registered in the Basque Public Health System (BPHS) in May 2022. Sociodemographic data and active diagnoses were extracted from the electronic medical records. The Pediatric Medical Complexity Algorithm v3.2 was used to identify children and adolescents with CCC and the Hain Directory of Life-Limiting Conditions, modified ad hoc for patients with LLC.

Results: A total of 377,349 children and adolescents were detected in the BPHS. The prevalence of children and adolescents with CCC was 681 per 10,000. It was higher in males and increased progressively with age. The most affected systems were neurological (39.9%), respiratory (37.2%), mental health (28.1%), musculoskeletal (20.7%) and metabolic (19.7%) systems. The prevalence of children and adolescents with LLC was 90.7 per 10,000. It was the highest in children under one year of age and was slightly higher among males. The most common conditions were congenital malformations and chromosomal anomalies (37.7%), oncological (18.3%), neurological (16.1%) and metabolic diseases (6.5%). Among children and adolescents with LLC, 72% also had CCC. The prevalence of LCC and/or CCC was greater in children and adolescent patients with lower socioeconomic status.

Conclusions: The prevalence of CCC and/or LLC in children with BPHS was high. A considerable proportion of children with LLC also met the criteria for CCC. These findings may help allocate available healthcare resources equitably and efficiently to provide comprehensive care for patients and their families.