Skip to main content
Top
Gepubliceerd in:

01-06-2013 | Brief Communication

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

Auteurs: Aimee Aubeeluck, Julie Dorey, Ferdinando Squitieri, Emilie Clay, Edward J. N. Stupple, Annunziata De Nicola, Heather Buchanan, Tiziana Martino, Mondher Toumi

Gepubliceerd in: Quality of Life Research | Uitgave 5/2013

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
1.
go back to reference Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: reliability and validity. Clinical Genetics, 71(5), 434–445.PubMedCrossRef Aubeeluck, A., & Buchanan, H. (2007). The Huntington’s disease quality of life battery for carers: reliability and validity. Clinical Genetics, 71(5), 434–445.PubMedCrossRef
2.
go back to reference Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press. Bates, G., Harper, P., & Jones, L. (2002). Huntington’s disease (3rd ed.). Oxford: Oxford University Press.
3.
go back to reference Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press. Quarrell, O. (2008). Huntington’s disease: The facts (2nd ed.). Oxford: Oxford University Press.
4.
go back to reference 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.CrossRef 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.CrossRef
5.
go back to reference Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.PubMedCrossRef Veenhuizen, R. B., & Tibben, A. (2009). Coordinated multidisciplinary care for Huntington’s disease. A outpatient department. Brain Research Bulletin, 80, 192–195.PubMedCrossRef
6.
go back to reference Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.PubMedCrossRef Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145–150.PubMedCrossRef
7.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
8.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
9.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
10.
go back to reference Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.CrossRef Hans, M. B., & Koeppen, A. H. (1980). Huntington’s Chorea: Its impact on the spouse. Journal of Nervous and Mental Disorders, 168, 209–214.CrossRef
11.
go back to reference Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.PubMed Semple, O. D. (1995). The experiences of family members of persons with Huntington’s disease. Perspectives, 19(4), 4–10.PubMed
12.
go back to reference 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.CrossRef 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.CrossRef
13.
go back to reference 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 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
14.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
15.
go back to reference Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s chorea on family life. British Journal of Social Work, 15, 581–597. Korer, J., & Fitzsimmons, J. S. (1985). The effect of Huntington’s chorea on family life. British Journal of Social Work, 15, 581–597.
16.
go back to reference Shakespeare, J., & Anderson, J. (1993). Huntington’s disease—falling through the net. Heath Trends (England), 25(1), 19–23. Shakespeare, J., & Anderson, J. (1993). Huntington’s disease—falling through the net. Heath Trends (England), 25(1), 19–23.
17.
go back to reference 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. 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.
go back to reference Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoL-A5) manual. Toorak: Deakin University. Cummins, R. A. (1997). The comprehensive quality of life scale (CoMQoL-A5) manual. Toorak: Deakin University.
19.
go back to reference 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. 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.
go back to reference Euro-HDB (2009). The first large, comprehensive European Study on the burden of Huntington’s disease. 09 Nov 21. Euro-HDB (2009). The first large, comprehensive European Study on the burden of Huntington’s disease. 09 Nov 21.
21.
go back to reference Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory (3rd ed.). New York, NY: McGraw-Hill.
22.
go back to reference 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. 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.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
24.
go back to reference Skirton, H., & Glendinning, N. (2007). Using research to develop care for patients with Huntington’s disease. British Journal of Nursing, 6(2), 83–90. Skirton, H., & Glendinning, N. (2007). Using research to develop care for patients with Huntington’s disease. British Journal of Nursing, 6(2), 83–90.
25.
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
27.
go back to reference Adam, P., & Herzlich, C. (2007). Sociologie de la maladie et de la médecine. Armand Colin. Adam, P., & Herzlich, C. (2007). Sociologie de la maladie et de la médecine. Armand Colin.
Metagegevens
Titel
Further evidence of reliability and validity of the Huntington’s disease quality of life battery for carers: Italian and French translations
Auteurs
Aimee Aubeeluck
Julie Dorey
Ferdinando Squitieri
Emilie Clay
Edward J. N. Stupple
Annunziata De Nicola
Heather Buchanan
Tiziana Martino
Mondher Toumi
Publicatiedatum
01-06-2013
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 5/2013
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-012-0227-2