Abstract
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.
Abbreviations
- HD:
-
Huntington’s disease
- QoL:
-
Quality of life
References
Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: reliability and validity. Clinical Genetics, 71(5), 434–445.
Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.
Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.
Imarisio, S., Carmichael, J., Korolchuk, V., Chen, C.-W., Saiki, S., Rose, C., et al. (2008). Huntington’s disease: From pathology and genetics to potential therapies. Journal of Biochemistry, 412, 191–209.
Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.
Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.
Williams, J. K., Schutte, D. L., Holkup, P. A., Evers, C., & Muilenburg, A. (2000). Psychosocial impact of predictive testing for Huntington’s disease on support persons. American Journal of Medical Genetics, 96, 353–359.
Hartelius, L., Jonsson, M., Rickeberg, A., & Laakso, K. (2010). Communications and Huntington’s disease: Qualitative interviews and focus groups with persons with Huntington’s disease, family members and carers. International Journal of Language and Communication Disorders, 45(3), 381–393.
Ready, R. E., Mathews, M., Leserman, A., & Paulsen, J. S. (2008). Patient and caregiver quality of life in Huntington’s disease. Movement Disorders, 23(5), 721–726.
Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.
Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.
Aubeeluck, A., & Buchanan, H. (2006). Capturing the Huntington’s disease spousal carer experience: A preliminary investigation using the ‘photovoice’ method. Dementia: The international Journal of Social Research and Practice, 5(1), 95–116.
Hayden, M. R., Ehrlich, R., Parker, H., & Ferera, S. J. (1980). Social perspectives in Huntington’s chorea. South African Medical Journal, 58, 201–203.
Tyler, A., Harper, P. S., Davies, K., & Newcome, R. G. (1983). Family break-down and stress in Huntington’s chorea. Journal of Biosocial Science, 15, 127–138.
Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s chorea on family life. British Journal of Social Work, 15, 581–597.
Shakespeare, J., & Anderson, J. (1993). Huntington’s disease—falling through the net. Heath Trends (England), 25(1), 19–23.
Williams, J. K., Skirton, H., Paulsen, J. S., Tripp-Reimer, T., Jarmon, L., McGonigal Kenny, M., & Birrer, E, et al. (2009). Journal of Advanced Nursing, 65(4), 789–798.
Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoL-A5) manual. Toorak: Deakin University.
Aubeeluck, A. (2005). The development and validation of a scale to measure the impact of Huntington’s disease on the quality of life of Spousal carers. Unpublished PhD Thesis, University of Derby.
Euro-HDB (2009). The first large, comprehensive European Study on the burden of Huntington’s disease. 09 Nov 21.
Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill.
Zumbo, B. D. (1999). A handbook on the theory and methods of differential item functioning (DIF): logistic regression modeling as a unitary framework for Binaryand Likert-Type (ordinal) item scores. Ottawa, ON: Directorate of Human ResourcesResearch and Evaluation, Department of National Defense.
Skirton, H., Williams, J., Jackson Barnette, J., & Paulsen, J. S. (2010). Huntington’s disease: Families’ experiences of healthcare services. Journal of Advanced Nursing, 66(3), 500–519.
Skirton, H., & Glendinning, N. (2007). Using research to develop care for patients with Huntington’s disease. British Journal of Nursing, 6(2), 83–90.
US Department of Health and Human Services Food and Drug Administration (2009, December). Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims.
Wild, D., Grove, A., Martin, M., et al. (2005). Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR task force for translating adaptation. Value in Health, 2, 94–104.
Adam, P., & Herzlich, C. (2007). Sociologie de la maladie et de la médecine. Armand Colin.
Acknowledgments
Thanks are given to the family caregivers who gave up their limited time to take part in this research as well as the patient association “ASSOCIATION HUNTINGTON FRANCE.” We would like to thank both reviewers for their constructive feedback and expertise, in particular (XXXX) for their efforts in reconstructing elements of the validation section.
Conflicts of interest
The University of Lyon received an educational grant for the survey from Neurosearch.
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Aubeeluck, A., Dorey, J., Squitieri, F. et al. Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations. Qual Life Res 22, 1093–1098 (2013). https://doi.org/10.1007/s11136-012-0227-2
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DOI: https://doi.org/10.1007/s11136-012-0227-2