PURPOSE: To explore the impact of childhood limb loss on families in terms of healthcare utilisation, schooling and parental labour supply.

METHODS: Data were obtained from a cross-sectional, retrospective pilot survey of 123 parents or caregivers of children with limb loss selected randomly after stratification by aetiology (i.e. trauma, malignancy and congenital limb deficiency) from among eligible families identified by the Amputee Coalition of America. Healthcare utilisation, school (child) and labour market (parents) participation were examined.

RESULTS: Children with limb loss use health services frequently and miss school for limb loss-related concerns. Over half of all parents adjusted their work participation in response to their child's limb loss. The use of prostheses may increase direct and indirect costs of limb loss. Children with acquired limb loss (amputation following trauma or cancer) were more likely than those with a congenital limb deficiency to use a prosthesis.

CONCLUSIONS: Our data suggest that the impact of limb loss on families of affected children may include substantial costs, particularly when school and work effects are taken into account. Further research is needed to identify the full household- and societal-level costs of childhood limb loss and suggest interventions to reduce the burden experienced by families.