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Quality of Life Research

Erschienen in:

01.11.2011

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

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

Erschienen in: Quality of Life Research | Ausgabe 9/2011

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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.

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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

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

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.

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

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.

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

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

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Cohen, J. (1988). Statistical power analysis for the behavioural sciences. N Y: Academic Press.

31.

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.

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.

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.

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.

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.

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

Titel: Measuring health and well-being effects in family caregivers of children with craniofacial malformations
verfasst von: Nalin Payakachat
J. Mick Tilford
Werner BF Brouwer
N. Job van Exel
Scott D. Grosse
Publikationsdatum: 01.11.2011
Verlag: Springer Netherlands
Erschienen in: Quality of Life Research / Ausgabe 9/2011
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-011-9870-2

Live-Webinar "Urologie und Sexualmedizin in der Praxis"

Springer Medizin

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

Abstract

Purpose

Methods

Results

Conclusions

Live-Webinar "Urologie und Sexualmedizin in der Praxis"

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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An appreciation of Dr. Stephen M. Haley, PT, PhD, FAPTA