Objective: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members.
Design: Cross-sectional survey.
Setting: Bath Clinical Area (total population 411,800).
Subjects: Children aged 0-19 years.
Results: One hundred and twenty-three children were identified, giving a prevalence of 1.2/1000 children. Morbidity assessed in 93 children showed 60% in pain or discomfort, 35% unable to walk and 25% with severe cognitive impairment. Mental health problems were found in 54% of mothers and 30% of fathers, and significant emotional and behavioural problems in 24% of healthy siblings.
Conclusions: Non-malignant life-threatening illness is more prevalent than reported in previous studies. Considerable morbidity is experienced by the child and their family. An individual and family approach is required. Key messages (1) The prevalence of non-malignant life-threatening illness is four times greater than previous estimates. (2) This group of conditions have significant implications for all family members. (3) Early comprehensive assessment and access to effective interventions may pre-empt later problems.