title: Haemangioma family burden: creation of a specific questionnaire.
abstract: To develop and validate a specific questionnaire to assess burden on families of children with infantile haemangioma (IH): the Haemangioma Family Burden questionnaire (HFB). Items were generated from a literature review and a verbatim report from parents. Subsequently, a study was implemented at the Necker Hospital and the Pellegrin Children's Hospital for psychometric analysis. The HFB was refined via item reduction according to inter-question correlations, consensus among experts and exploratory factor analysis. A 20-item questionnaire, grouped into 5 dimensions, was obtained. Construct validity was demonstrated and HFB showed good internal coherence (Cronbach's α: 0.93). The HFB was significantly correlated with the mental dimension of the Short-Form-12 (r = -0.75), and the Psychological General Well-Being Index (r = -0.61). HFB scores differed significantly according to the size and localization of the IH. A validated tool for assessing the burden on families of children with IH is now available.
authors.affiliation: Department of Dermatology, Hopital Universitaire Necker-Enfants Malades, FR-75000 Paris, France. olivia.boccara@nck.aphp.fr.
authors.forename: Olivia
authors.initials: O
authors.lastname: Boccara
authors.forename: Cecile
authors.initials: C
authors.lastname: Méni
authors.forename: Christine
authors.initials: C
authors.lastname: Léauté-Labreze
authors.forename: Christine
authors.initials: C
authors.lastname: Bodemer
authors.forename: Jean-Jacques
authors.initials: JJ
authors.lastname: Voisard
authors.forename: Hélène
authors.initials: H
authors.lastname: Dufresne
authors.forename: Sébastien
authors.initials: S
authors.lastname: Brauchoux
authors.forename: Charles
authors.initials: C
authors.lastname: Taieb
mesh_terms: D000041:Absenteeism; D002675:Child, Preschool; D017281:Cost of Illness; D004644:Emotions; D004651:Employment; D005163:Factor Analysis, Statistical; D005195:Family Relations; D005260:Female; D005602:France; D006391:Hemangioma / Q000175:diagnosis / Q000523:psychology*; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D011237:Predictive Value of Tests; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires