RESUMO
OBJECTIVE: To assess the quality-of-life (QOL) of children receiving home parenteral nutrition (HPN). STUDY DESIGN: A national multicenter study of 72 patients (median age 4 years) presenting with a digestive disease requiring HPN, and 90 siblings, 67 fathers, and 69 mothers of these children. Median duration of HPN was 2 years (3 months-18 years). QOL was measured using validated, nondisease-specific questionnaires appropriate to the children's ages. RESULTS: The QOL scores were high in patients of all ages and were not significantly different from scores in a reference population of healthy children and adolescents. Lower QOL scores were recorded in the domains related to hospital, health, doctors, medications, and obligations. The QOL was not affected in siblings but was significantly impaired in parents, especially in mothers, who showed a lower level of satisfaction than did fathers for items related to work, inner life, and freedom. Presence of an ileostomy was the only factor that influenced QOL, especially of adolescents. CONCLUSIONS: QOL of HPN-dependent children and siblings is not different from that of healthy children, suggesting that these children actively use effective coping strategies. In contrast, the QOL of parents of HPN-dependent children is low.