CROSS-CULTURAL VALIDATION OF THE HUNTINGTON'S DISEASE QUALITY OF LIFE BATTERY FOR CARERS IN FRANCE AND ITALY
Author(s)
Dorey J1, Aubeeluck A2, Squitieri F3, Clay E4, Stupple EJN5, De Nicola N3, Buchanan H6, Martino T7, Toumi M81Creativ Ceutical, Paris, France, 2University of Nottingham, Derby, United Kingdom, 3Neurogenetics and Rare Disease Centre, Pozzi, Italy, 4Creativ-Ceutical, Paris, France, 5University of Derby, Derby , United Kingdom, 6University of Nottingham, Nottingham, United Kingdom, 7AICH-Neuromed onlus, Pozzilli, Italy, 8University Claude Bernard Lyon 1, Lyon, France
OBJECTIVES: Huntington’s disease (HD) is a neurodegenerative disease that causes movement disorders, and cognitive and psychological deterioration; leading to considerable burden for patients and their families. The paucity of research into the impact of HD on the quality of life (QoL) of family carers led Aubeeluck and Buchanan to develop and validate a disease-specific QoL measure to evaluate caregivers’ QoL, and assess the efficacy of therapeutic interventions. This current study aimed to validate a shortened version of the HD QoL Battery for Carers (HDQoL-C) in France and Italy. METHODS: The shortened version of the HDQoL-C comprised two components: the satisfaction with life component (3 items) and the feelings about living with HD(17 items). It was translated forwards and backwards by native speakers. 301 family carers completed the questionnaire. While face validity was studied through item completion, internal validity was evaluated using factorial structure and internal consistency. Differential item functioning (DIF) analyses were also performed to test whether all items behaved in the same manner among the country subgroups. External validation was tested using known-group comparison analyses between three severity subgroups, according to dependence, global clinical severity and motor severity. RESULTS: The translated short version showed satisfactory face validity with few missing data (up to 6%) and a good reliability despite the item reduction (Cronbach's alpha coefficients of around 0.8 for both components). The factor analysis was comparable to the original version, with the variable distribution according to the two factors being the same. No significant DIF between France and Italy was detected. Carers who cared for patients with less clinically severe symptoms of HD reported significantly better QoL than carers of patients with more clinically severe symptoms. CONCLUSIONS: These findings indicate that the HDQoL-C is multi-lingual, multi-cultural and easily applicable in other languages.
Conference/Value in Health Info
2012-11, ISPOR Europe 2012, Berlin, Germany
Value in Health, Vol. 15, No. 7 (November 2012)
Code
PND59
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders, Respiratory-Related Disorders
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