INFANTILE HEMANGIOMA ON FAMILIES,CREATION OF A SPECIFIC BURDEN QUESTIONNAIRE

Author(s)

Boccara O1, Meni C1, Labreze C2, Bodemer C3, Voisard JJ4, Taieb C51Necker Hospital, Paris, France, 2Hospital Pellegrin, Bordeaux, France, 3René Descartes University, Paris, France, 4PFD, Lavaur, France, 5CREES PFSA, Boulogne , France

OBJECTIVES: Infantile hemangioma (IH) is the most common form of benign vascular tumor in children, with an estimated incidence of between 3 and 10% of Caucasian children. The aim of our study is to develop a specific questionnaire for assessing the burden on families of children with HI. METHODS: A “Hemangioma Family Burden” questionnaire (HFB) consisting of 22 items. It was distributed  accompanied by SF12 and PGWBI, to obtain internal and external validation. RESULTS: Fifty-eight evaluable questionnaires were returned, completed by either the mother (63.27%) or the father (36.7%). At the time of the survey, the average age of the child with IH was 9.34±4.75months.  Internal validity was measured by Cronbach’s-alpha (0.95), reflecting a good homogeneity of the 22 items.While the score of the physical component does not vary with the expressed extent of the hemangioma (p=0.2931), the burden scores of the SF12 mental component and the PGWBI “wellness” component increase with “severity”, as perceived by the parents and expressed in terms of extent. Hence, the HFB score is correlated with these 2 components, thus confirming external validity.The mean score calculated from the HFB is 23.42±19.93. The score increases with the “severity score” of the parents. In fact, a statistically significant difference is observed between the 3 severity groups: 5.28±6.8 for those reporting the smallest extent to 41.0±18.71 for those reporting the greatest extent, and 27.7±16.96 for a moderate extent. This confirms the sensitivity of the HFB. CONCLUSIONS: Internal and external validity were confirmed. The HFB is correlated with the extent felt by parents, a feeling deemed relevant because it is often the cause of consultation and demand for treatment. We now have an easy-to-use, validated IH tool for assessing the disability caused. Following cultural and linguistic validation, the HFB is now available in US English, Spanish, German and Italian.

Conference/Value in Health Info

2012-11, ISPOR Europe 2012, Berlin, Germany

Value in Health, Vol. 15, No. 7 (November 2012)

Code

PRM93

Topic

Methodological & Statistical Research

Topic Subcategory

PRO & Related Methods

Disease

Pediatrics

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