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Burden of Infantile Hemangioma on Family: An International Observational Cross‐Sectional Study
Author(s) -
Cazeau Christine,
Blei Francine,
Gonzáles Hermosa María del Rosario Fátima,
Cavalli Riccardo,
Boccara Olivia,
FölsterHolst Regina,
Berdeaux Gilles,
Delarue Alain,
Voisard JeanJacques
Publication year - 2017
Publication title -
pediatric dermatology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.542
H-Index - 73
eISSN - 1525-1470
pISSN - 0736-8046
DOI - 10.1111/pde.13133
Subject(s) - medicine , cross sectional study , infantile hemangioma , observational study , pediatrics , hemangioma , propranolol , family medicine , surgery , pathology
Background/Objectives Infantile hemangioma ( IH ) is the most frequent benign tumor of infancy resulting from vascular proliferation. Data regarding the burden on families of children with IH s are limited. This study aimed to characterize IH s and provide a comprehensive evaluation of the burden of IH s on parents of children requiring systemic treatment in the United States and Europe. Methods This noninterventional cross‐sectional study included infants with newly diagnosed IH requiring systemic treatment. A parent or family member completed two questionnaires (Family Member questionnaire; Hemangioma Family Burden [ HFB ] questionnaire). Results A total of 693 individuals were evaluable in five countries. IH s were observed in more girls than boys (66%–83% female) and the mean age at inclusion was 0.44 to 1.4 years. Approximately half of patients had superficial IH s, approximately 70% of cases affected the head, and approximately 80% of cases were moderate or severe. Most patients received propranolol treatment. Their child's IH affected more than 70% of parents in each country, but fewer than 10% were offered psychological support. Approximately half of all parents reported that their child's IH affected their professional life. The global HFB score was significantly (p < 0.001) greater with greater IH severity. More than 90% of parents in each country were satisfied with the care of their child's disease. Conclusions This international study using the validated HFB questionnaire provides further insight into the burden of IH and highlights potential areas for future focus in assisting families with affected children.