HEMANGIOMA FAMILY BURDEN- CREATION OF A SPECIFIC QUESTIONNAIRE

Author(s)

Taieb C*1, Boccara O2 1CREES PFSA, Paris, France, 2Necker Hospital, Paris, France

OBJECTIVES: The notion of individual burden, associated with the disease, has been introduced recently to determine the “disability” caused by the pathology in the broadest sense of the word (psychological-social-economic-physical).  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, The score increases with the heaviness of the burden. It was distributed accompanied by 2 validated QoL questionnaires (SF12 and PGWBI) to obtain internal and external validation RESULTS: 58 evaluable Q were returned. One parent from each family described how they perceived the effects of the disease, which led to the creation of 6 severity groups, paired together for size reasons: “not-very-far-reaching” and “somew-hat-far-reaching”; “quite-far-reaching” and “far-reaching”; “very far-reaching” and “extremely far-reaching”. Internal validity was measured by Cronbach’s alpha, which is equal to 0.95, reflecting a good homogeneity of the 22 Q items. The mean scores of the physical and mental components are 54.93±5.12 and 40.49±11.28 respectively. 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:  During the evaluation, 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

2013-11, ISPOR Europe 2013, The Convention Centre Dublin

Value in Health, Vol. 16, No. 7 (November 2013)

Code

PSS41

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Sensory System Disorders

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