Skip to main content
Top
Gepubliceerd in:

01-11-2011

Measuring health and well-being effects in family caregivers of children with craniofacial malformations

Auteurs: Nalin Payakachat, J. Mick Tilford, Werner BF Brouwer, N. Job van Exel, Scott D. Grosse

Gepubliceerd in: Quality of Life Research | Uitgave 9/2011

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

Purpose

This research explores the sensitivity of three generic instruments for preference-weighting health states of family caregivers of children with craniofacial malformations (CFM). We also examine the construct validity of the new CarerQol instrument measuring caregiver burden and general quality of life.

Methods

Caregivers of children born with CFM were identified through the Arkansas Reproductive Health Monitoring System. A mailed survey included the HUI3, the SF-6D, the QWB-SA to measure health-related quality of life; the CES-D measuring depressive symptoms as well as the SRB scale, and the CarerQol. The HUI3, the SF-6D, and the QWB-SA were examined in relation to the CES-D the SRB, the CarerQol, and each other.

Results

A total of 65 (63%) parents of children (≤17 years) responded. The mean SF-6D, HUI3, and QWB-SA scores were 0.81 (SD = 0.13), 0.84 (SD = 0.23), and 0.67 (SD = 0.14), respectively. The mean CES-D score was 13.3 (SD = 13.4) and 28.6% of the sample met a threshold for depressive symptoms (CES-D ≥ 16). The mean CarerQol-VAS and SRB scores were 7.5 (SD = 2.3) and 15.1 (SD = 23.5), respectively. The Spearman correlations (ρ) of the HUI3 and the SF-6D with the CES-D were similar (−0.81 and −0.76) while the ρ was lower (−0.57) for the QWB-SA. Preference-weighted scores of caregivers with CES-D scores ≥ 16 differed significantly for both the SF-6D and the HUI3, but not the QWB-SA. All three generic instruments showed moderate to strong relationships with the CarerQol.

Conclusions

The HUI3 and SF-6D were more sensitive predictors of depressive symptoms in this caregiver sample than was the QWB-SA. The CarerQol showed good construct validity and may be useful for measuring well-being effects associated with caregiving.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference Wehby, G. L., & Cassell, C. H. (2010). The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Diseases, 16(1), 3–10.PubMedCrossRef Wehby, G. L., & Cassell, C. H. (2010). The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Diseases, 16(1), 3–10.PubMedCrossRef
2.
go back to reference Weiss, J., Kotelchuck, M., Grosse, S. D., Manning, S. E., Anderka, M., Wyszynski, D. F., et al. (2009). Hospital use and associated costs of children aged 0–2 years with craniofacial malformations in Massachusetts. Birth Defects Research (Part A), 85, 925–934.CrossRef Weiss, J., Kotelchuck, M., Grosse, S. D., Manning, S. E., Anderka, M., Wyszynski, D. F., et al. (2009). Hospital use and associated costs of children aged 0–2 years with craniofacial malformations in Massachusetts. Birth Defects Research (Part A), 85, 925–934.CrossRef
3.
go back to reference Boulet, S. L., Grosse, S. D., Honein, M. A., & Correa-Villasenor, A. (2009). Children with orofacial clefts: Health-care use and costs among a privately insured population. Public Health Report, 124, 447–453. Boulet, S. L., Grosse, S. D., Honein, M. A., & Correa-Villasenor, A. (2009). Children with orofacial clefts: Health-care use and costs among a privately insured population. Public Health Report, 124, 447–453.
4.
go back to reference Cassell, C. H., Meyer, R., & Daniels, J. (2008). Health care expenditures among medicaid enrolled children with and without orofacial clefts in North Carolina, 1995–2002. Birth Defects Research (Part A), 82, 785–794.CrossRef Cassell, C. H., Meyer, R., & Daniels, J. (2008). Health care expenditures among medicaid enrolled children with and without orofacial clefts in North Carolina, 1995–2002. Birth Defects Research (Part A), 82, 785–794.CrossRef
5.
go back to reference World Health Organization. (2006). Addressiong the global challenges of craniofacial anomalies: Report of a WHO meeting on international collaborative research on craniofacial anomalies. Report no Geneva, December 2–4, 2004. World Health Organization. (2006). Addressiong the global challenges of craniofacial anomalies: Report of a WHO meeting on international collaborative research on craniofacial anomalies. Report no Geneva, December 2–4, 2004.
6.
go back to reference Brouwer, W. B., van Exel, N. J., & Tilford, J. M. (2009). Incorporating caregiver and family effects in economic evaluations of child health. In W. J. Ungar (Ed.), Economic evaluation in child health (pp. 55–76). N Y: Oxford Publisher Press.CrossRef Brouwer, W. B., van Exel, N. J., & Tilford, J. M. (2009). Incorporating caregiver and family effects in economic evaluations of child health. In W. J. Ungar (Ed.), Economic evaluation in child health (pp. 55–76). N Y: Oxford Publisher Press.CrossRef
7.
go back to reference Tilford, J. M., Robbins, J. M., & Hobbs, C. A. (2001). Improving estimates of caregiver time cost and family impact associated with birth defects. Teratology, 64(Suppl 1), S37–S41.PubMedCrossRef Tilford, J. M., Robbins, J. M., & Hobbs, C. A. (2001). Improving estimates of caregiver time cost and family impact associated with birth defects. Teratology, 64(Suppl 1), S37–S41.PubMedCrossRef
8.
go back to reference Grosse, S. (2010). Sociodemographic characteristics of families of children with down syndrome and the economic impacts on families of child disability. International Review of Research in Mental Retardation, 39, 257–294.CrossRef Grosse, S. (2010). Sociodemographic characteristics of families of children with down syndrome and the economic impacts on families of child disability. International Review of Research in Mental Retardation, 39, 257–294.CrossRef
9.
go back to reference Persson, C., Ostlund, U., Wennman-Larsen, A., Wengstrom, Y., & Gustavsson, P. (2008). Healthrelated quality of life in significant others of patients dying from lung cancer. Palliative Medicine, 22(3), 239–247.PubMedCrossRef Persson, C., Ostlund, U., Wennman-Larsen, A., Wengstrom, Y., & Gustavsson, P. (2008). Healthrelated quality of life in significant others of patients dying from lung cancer. Palliative Medicine, 22(3), 239–247.PubMedCrossRef
10.
go back to reference McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36(10), 2181–2186.PubMedCrossRef McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36(10), 2181–2186.PubMedCrossRef
11.
go back to reference Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. The Journal of the American Medical Association, 282, 2215–2219.CrossRef Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. The Journal of the American Medical Association, 282, 2215–2219.CrossRef
12.
go back to reference Schulz, R., Beach, S. R., Lind, B., Martire, L. M., Zdaniuk, B., Hirsch, C., et al. (2001). Involvement in caregiving and adjustment to death of a spouse: Findings from the caregiver health effects study. The Journal of the American Medical Association, 285(24), 3123–3129.CrossRef Schulz, R., Beach, S. R., Lind, B., Martire, L. M., Zdaniuk, B., Hirsch, C., et al. (2001). Involvement in caregiving and adjustment to death of a spouse: Findings from the caregiver health effects study. The Journal of the American Medical Association, 285(24), 3123–3129.CrossRef
13.
go back to reference Schulz, R., Belle, S. H., Czaja, S. J., McGinnis, K. A., Stevens, A., & Zhang, S. (2004). Long-term care placement of dementia patients and caregiver health and well-being. The Journal of the American Medical Association, 292(8), 961–967.CrossRef Schulz, R., Belle, S. H., Czaja, S. J., McGinnis, K. A., Stevens, A., & Zhang, S. (2004). Long-term care placement of dementia patients and caregiver health and well-being. The Journal of the American Medical Association, 292(8), 961–967.CrossRef
14.
go back to reference Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12(3), 240–249.PubMed Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12(3), 240–249.PubMed
15.
go back to reference Bobinac, A., van Exel, N. J. A., Rutten, F. F. H., Brouwer, W. B. F. (2010). Health effects in significant others: Separating family and caregiving effects. Medical Decision Making. doi:10.1177/0272989X10374212. Bobinac, A., van Exel, N. J. A., Rutten, F. F. H., Brouwer, W. B. F. (2010). Health effects in significant others: Separating family and caregiving effects. Medical Decision Making. doi:10.​1177/​0272989X10374212​.
16.
go back to reference Bobinac, A., van Exel N. J. A., Rutten, F. F. H., Brouwer, W. B. F. (2010). Caring for and caring about: Disentangling the family effect and the caregiving effect. Journal of Health Economics, 29(4), 549–556.PubMedCrossRef Bobinac, A., van Exel N. J. A., Rutten, F. F. H., Brouwer, W. B. F. (2010). Caring for and caring about: Disentangling the family effect and the caregiving effect. Journal of Health Economics, 29(4), 549–556.PubMedCrossRef
17.
go back to reference Neumann, P. J., Kuntz, K. M., Leon, J., Araki, S. S., Hermann, R. C., Hsu, M. A., et al. (1999). Health utilities in Alzheimer’s disease: A cross-sectional study of patients and caregivers. Medical Care, 37(1), 27–32.PubMedCrossRef Neumann, P. J., Kuntz, K. M., Leon, J., Araki, S. S., Hermann, R. C., Hsu, M. A., et al. (1999). Health utilities in Alzheimer’s disease: A cross-sectional study of patients and caregivers. Medical Care, 37(1), 27–32.PubMedCrossRef
18.
go back to reference Bell, C. M., Araki, S. S., & Neumann, P. J. (2001). The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 15(3), 129–136.PubMedCrossRef Bell, C. M., Araki, S. S., & Neumann, P. J. (2001). The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 15(3), 129–136.PubMedCrossRef
19.
go back to reference Tilford, J. M., Grosse, S. D., Robbins, J. M., Pyne, J. M., Cleves, M. A., & Hobbs, C. A. (2005). Health state preference scores of children with spina bifida and their caregivers. Quality of Life Research, 14(4), 1087–1098.PubMedCrossRef Tilford, J. M., Grosse, S. D., Robbins, J. M., Pyne, J. M., Cleves, M. A., & Hobbs, C. A. (2005). Health state preference scores of children with spina bifida and their caregivers. Quality of Life Research, 14(4), 1087–1098.PubMedCrossRef
20.
go back to reference Pyne, J. M., Sieber, W. J., David, K., Kaplan, R. M., Hyman, R. M., & Keith, W. D. (2003). Use of the quality of well-being self-administered version (QWB-SA) in assessing health-related quality of life in depressed patients. Journal of Affective Disorders, 76(1–3), 237–247.PubMedCrossRef Pyne, J. M., Sieber, W. J., David, K., Kaplan, R. M., Hyman, R. M., & Keith, W. D. (2003). Use of the quality of well-being self-administered version (QWB-SA) in assessing health-related quality of life in depressed patients. Journal of Affective Disorders, 76(1–3), 237–247.PubMedCrossRef
21.
go back to reference Brouwer, W. B., van Exel, N. J., van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021.PubMedCrossRef Brouwer, W. B., van Exel, N. J., van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021.PubMedCrossRef
22.
go back to reference Hoefman, R. J., van Exel, N. J., Looren de, J. S., Redekop, W. K., Brouwer, W. B. (2011). A new test of the construct validity of the CarerQol instrument: Measuring the impact of informal care giving. Quality of Life Research. doi:10.1007/s11136-010-9829. Hoefman, R. J., van Exel, N. J., Looren de, J. S., Redekop, W. K., Brouwer, W. B. (2011). A new test of the construct validity of the CarerQol instrument: Measuring the impact of informal care giving. Quality of Life Research. doi:10.​1007/​s11136-010-9829.
23.
go back to reference Damiano, P., Tyler, M., Romitti, P. A., Druschel, C., Austin, A. A., Burnett, W., et al. (2009). Demographic characteristics, care, and outcomes for children with oral clefts in three states using participants from the national birth defects prevention study. The Cleft Palate-Craniofacial Journal, 46(6), 575–582.PubMedCrossRef Damiano, P., Tyler, M., Romitti, P. A., Druschel, C., Austin, A. A., Burnett, W., et al. (2009). Demographic characteristics, care, and outcomes for children with oral clefts in three states using participants from the national birth defects prevention study. The Cleft Palate-Craniofacial Journal, 46(6), 575–582.PubMedCrossRef
24.
go back to reference Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Medical Care, 40(2), 113–128.PubMedCrossRef Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Medical Care, 40(2), 113–128.PubMedCrossRef
25.
go back to reference Brazier, J. E., & Roberts, J. (2004). The estimation of a preference-based measure of health from the SF-12. Medical Care, 42, 851–859.PubMedCrossRef Brazier, J. E., & Roberts, J. (2004). The estimation of a preference-based measure of health from the SF-12. Medical Care, 42, 851–859.PubMedCrossRef
26.
go back to reference Brazier, J., Roberts, J., & Deverill, M. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21, 271–292.PubMedCrossRef Brazier, J., Roberts, J., & Deverill, M. (2002). The estimation of a preference-based measure of health from the SF-36. Journal of Health Economics, 21, 271–292.PubMedCrossRef
27.
go back to reference Seiber, W. J., Groessl, E. J., Ganiats, T. G., & Kaplan, R. M. (2008). Quality of well being self-administered (QWB-SA) scale: User’s manual. San Diego, CA: Health Services Research Center, University of California. Seiber, W. J., Groessl, E. J., Ganiats, T. G., & Kaplan, R. M. (2008). Quality of well being self-administered (QWB-SA) scale: User’s manual. San Diego, CA: Health Services Research Center, University of California.
28.
go back to reference Radloff, L. S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.CrossRef Radloff, L. S. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.CrossRef
29.
go back to reference van Exel, N. J., Scholte op Reimer, W. J., Brouwer, W. B., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. (2004). Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: A comparison of CSI, CRA, SCQ and self-rated burden. Clinical Rehabilitation, 18, 203–214.PubMedCrossRef van Exel, N. J., Scholte op Reimer, W. J., Brouwer, W. B., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. (2004). Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: A comparison of CSI, CRA, SCQ and self-rated burden. Clinical Rehabilitation, 18, 203–214.PubMedCrossRef
30.
go back to reference Cohen, J. (1988). Statistical power analysis for the behavioural sciences. N Y: Academic Press. Cohen, J. (1988). Statistical power analysis for the behavioural sciences. N Y: Academic Press.
31.
go back to reference Basu, A., & Meltzer, D. (2005). Implications of spillover effects within the family for medical costeffectiveness analysis. Journal of Health Economics, 24(4), 751–773.PubMedCrossRef Basu, A., & Meltzer, D. (2005). Implications of spillover effects within the family for medical costeffectiveness analysis. Journal of Health Economics, 24(4), 751–773.PubMedCrossRef
32.
go back to reference Kelly, A. E., Haddix, A. C., Scanlon, K. S., Helmick, C. G., & Mulinar, J. (1996). Cost-effectiveness of strategies to prevent neural tube defects. In J. E. Siegel, L. B. Russell, M. C. Weinstein, & M. R. Gold (Eds.), Cost-effectiveness in health and medicine (pp. 312–349). N Y: Oxford University Press. Kelly, A. E., Haddix, A. C., Scanlon, K. S., Helmick, C. G., & Mulinar, J. (1996). Cost-effectiveness of strategies to prevent neural tube defects. In J. E. Siegel, L. B. Russell, M. C. Weinstein, & M. R. Gold (Eds.), Cost-effectiveness in health and medicine (pp. 312–349). N Y: Oxford University Press.
33.
go back to reference Basu, A., Dale, W., Elstein, A., Meltzer, D. (2010). A time tradeoff method for eliciting partner’s quality of life due to patient’s health states in prostate cancer. Medical Decision Making, 30(3), 355–365.PubMedCrossRef Basu, A., Dale, W., Elstein, A., Meltzer, D. (2010). A time tradeoff method for eliciting partner’s quality of life due to patient’s health states in prostate cancer. Medical Decision Making, 30(3), 355–365.PubMedCrossRef
34.
go back to reference Prosser, L. A., Ray, G. T., O’Brien, M., Kleinman, K., Santoli, J., & Lieu, T. A. (2004). Preferences and willingness to pay for health states prevented by pneumococcal conjugate vaccine. Pediatrics, 113, 283–290.PubMedCrossRef Prosser, L. A., Ray, G. T., O’Brien, M., Kleinman, K., Santoli, J., & Lieu, T. A. (2004). Preferences and willingness to pay for health states prevented by pneumococcal conjugate vaccine. Pediatrics, 113, 283–290.PubMedCrossRef
35.
go back to reference Prosser, L., Bridges, C., Uyeki, T., Rego, V., Ray, G. T., Meltzer, M., et al. (2005). Values for preventing influenza-related morbidity and vaccine adverse events in children. Health and Quality of Life Outcomes, 3(1), 18.PubMedCrossRef Prosser, L., Bridges, C., Uyeki, T., Rego, V., Ray, G. T., Meltzer, M., et al. (2005). Values for preventing influenza-related morbidity and vaccine adverse events in children. Health and Quality of Life Outcomes, 3(1), 18.PubMedCrossRef
36.
go back to reference van den Berg, B., Bleichrodt, H., & Eeckhoudt, L. (2005). The economic value of informal care: A study of informal caregivers’ and patients’ willingness to pay and willingness to accept for informal care. Health Economics, 14(4), 363–376.PubMedCrossRef van den Berg, B., Bleichrodt, H., & Eeckhoudt, L. (2005). The economic value of informal care: A study of informal caregivers’ and patients’ willingness to pay and willingness to accept for informal care. Health Economics, 14(4), 363–376.PubMedCrossRef
Metagegevens
Titel
Measuring health and well-being effects in family caregivers of children with craniofacial malformations
Auteurs
Nalin Payakachat
J. Mick Tilford
Werner BF Brouwer
N. Job van Exel
Scott D. Grosse
Publicatiedatum
01-11-2011
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 9/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9870-2

Andere artikelen Uitgave 9/2011

Quality of Life Research 9/2011 Naar de uitgave