Skip to main content
SpringerLink
Log in

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

  • Brief Communication
  • Published:
Quality of Life Research Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Abbreviations

HD:

Huntington’s disease

QoL:

Quality of life

References

  1. Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: reliability and validity. Clinical Genetics, 71(5), 434–445.

    Article  PubMed  CAS  Google Scholar 

  2. Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.

    Google Scholar 

  3. Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.

    Google Scholar 

  4. 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.

    Article  CAS  Google Scholar 

  5. Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.

    Article  PubMed  Google Scholar 

  6. Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.

    Article  PubMed  CAS  Google Scholar 

  7. 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.

    Article  PubMed  CAS  Google Scholar 

  8. 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.

    Article  PubMed  Google Scholar 

  9. 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.

    Article  PubMed  Google Scholar 

  10. Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.

    Article  CAS  Google Scholar 

  11. Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.

    PubMed  CAS  Google Scholar 

  12. 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.

    Article  Google Scholar 

  13. Hayden, M. R., Ehrlich, R., Parker, H., & Ferera, S. J. (1980). Social perspectives in Huntington’s chorea. South African Medical Journal, 58, 201–203.

    PubMed  CAS  Google Scholar 

  14. 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.

    Article  PubMed  CAS  Google Scholar 

  15. Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s chorea on family life. British Journal of Social Work, 15, 581–597.

    Google Scholar 

  16. Shakespeare, J., & Anderson, J. (1993). Huntington’s disease—falling through the net. Heath Trends (England), 25(1), 19–23.

    CAS  Google Scholar 

  17. 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.

  18. Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoL-A5) manual. Toorak: Deakin University.

    Google Scholar 

  19. 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.

  20. Euro-HDB (2009). The first large, comprehensive European Study on the burden of Huntington’s disease. 09 Nov 21.

  21. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill.

    Google Scholar 

  22. 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.

  23. 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.

    Article  PubMed  Google Scholar 

  24. Skirton, H., & Glendinning, N. (2007). Using research to develop care for patients with Huntington’s disease. British Journal of Nursing, 6(2), 83–90.

    Google Scholar 

  25. 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.

  26. 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.

    Article  Google Scholar 

  27. Adam, P., & Herzlich, C. (2007). Sociologie de la maladie et de la médecine. Armand Colin.

Download references

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.

Author information

Authors and Affiliations

  1. Division of Nursing, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Royal Derby Hospital, Uttoxeter Road , Derby, DE22 3DT, UK

    Aimee Aubeeluck

  2. Creativ-Ceutical, Paris, France

    Julie Dorey & Emilie Clay

  3. Centre for Neurogenetics and Rare Diseases, IRCCS Neuromed, Pozzilli, Italy

    Ferdinando Squitieri, Annunziata De Nicola, Heather Buchanan & Tiziana Martino

  4. Department of Psychology, University of Derby, Derby, UK

    Edward J. N. Stupple

  5. Department of Health Psychology, Institute of Work, Health and Organisation, University of Nottingham, Nottingham, UK

    Heather Buchanan

  6. University Claude Bernard Lyon I, Villeurbanne, France

    Mondher Toumi

Authors
  1. Aimee Aubeeluck
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Julie Dorey
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Ferdinando Squitieri
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Emilie Clay
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Edward J. N. Stupple
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Annunziata De Nicola
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Heather Buchanan
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Tiziana Martino
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Mondher Toumi
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Aimee Aubeeluck.

Rights and permissions

Reprints and permissions

About this article

Cite this article

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

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-012-0227-2

Keywords

Search

Navigation