Increasing trend in patients with life-limiting and complex chronic conditions

Introduction and objectives

To estimate the frequency of patients with diagnoses associated with life-limiting conditions (LLCs) or complex chronic conditions (CCCs).

Methods

Retrospective mixed population-based and hospital-based cohort study. Study universe consisted of the population aged less than 18 years of an autonomous community in Spain in the 2001–2021 period; the cases were patients admitted to hospital with a diagnosis associated with LLC or CCC during this period. We estimated age-adjusted annual prevalences and analysed changes in trends using joinpoint regression.

Results

The prevalence of LLCs increased significantly from 20.7 per 10 000 inhabitants under 18 years in 2001 to 51.3 per 10 000 in 2019. There was also a significant increase in CCCs from 39.9 per 10 000 in 2001 to 54.4 per 10 000 in 2019. The prevalence of patients with any of these conditions rose from 45 per 10 000 in 2001 to 86.8 per 10 000 in 2019; 30.3% of these patients had conditions of both types. There was a turning point in this increasing trend between 2019 and 2020, coinciding with the COVID-19 pandemic.

Conclusions

The prevalence of patients requiring specialized care has increased progressively in the last 20 years, similar to what has happened in other countries. The magnitude of the affected population must be taken into account when planning specialized paediatric palliative care and complex chronic care services.