• Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations

      Aubeeluck, Aimee; Dorey, Julie; Squitieri, Ferdinando; Clay, Emilie; Stupple, Edward J. N.; De Nicola, Annunziata; Buchanan, Heather; Martino, Tiziana; Toumi, Mondher; University of Derby (2012-07-21)
      Background Existing research suggests that family caregivers of persons with Huntington’s disease (HD) face a distinct series of problems, linked to the complex nature of the disease. Aubeeluck and Buchanan (Clin Genet, 71(5):434–445, 2007) developed and validated a disease-specific measure used to explore caregivers quality of life and assess the efficacy of therapeutic interventions. This current study builds on this research through the validation of French and Italian translations of the Huntington’s disease quality of life battery for carers (HDQoL-C). Method A total of 301 family carers completed the HDQoL-C. Participants were recruited through the “Euro-HDB” study which is measuring the burden in HD across Europe and the USA. Results Factor analysis demonstrated good internal consistency, reliability and congruent validity. Carers who cared for patients with less clinically severe symptoms reported significantly better QoL than carers of patients with more clinically severe symptoms. Discussion Findings indicate the HDQoL-C is multi-lingual, multi-cultural and easily applicable in other languages.