Survival in children and adolescents with life-limiting conditions-a nationwide cohort study

There is an increasing prevalence of children and adolescents with life-limiting conditions (LLC) with potential need for supportive and palliative care, but their survival has never been investigated. We aimed to investigate the survival of children and adolescents with LLC and potential factors for poor prognosis through a registry-based nationwide cohort study. We included all patients aged 0-21 years, born in Denmark and diagnosed with an LLC between January 1, 1995 and December 31, 2021. Kaplan-Meier survival curves were plotted across disease groups. Regression models with 1-year and 10-year restricted mean survival time as outcomes were used to investigate factors for poor prognosis including child sex, age, parental education and diagnostic period. We identified 102,793 children and adolescents with a total of 116,599 LLC (10.8% had >1 diagnosis). Median follow-up time was 9.85 years (interquartile range 5.15, 16.05) with 5728 deaths. Most deaths occurred within one year of diagnosis. Overall 1-year and 10-year survival rates were 95.6% and 94.5% respectively. In children <1 year, the poorest overall survival was seen in children with metabolic diseases before 2010 and neurologic diseases after 2010. In children ≥1 year, the poorest overall survival was seen in those with malignancy diseases regardless of diagnostic period. Children <1 year, with multiple concurrent diagnoses, parents with shorter educations, and diagnosed before 2010 had the shortest survival times. Most children and adolescents with LLC live for many years with illness. Thus, it is important to clarify their need for supportive and palliative care, along the illness trajectory.