Skip to main content

Advertisement

SpringerLink
Log in

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

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

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.

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

Similar content being viewed by others

Abbreviations

CFM:

Craniofacial malformation

CarerQol-7D:

7-Dimension carerqol instrument

CarerQol-VAS:

Visual analogue scale section of the carerqol instrument

CES-D:

The center for epidemiologic studies depression scale

HRQL:

Health-related quality of life

HUI3:

The health utilities index mark 3

PHS:

The US public health service

QALY:

Quality-adjusted life year

QWB-SA:

The quality of well-being self-administered scale

SF-6D:

6-Dimension short-form

SRB:

Self-rated burden scale

References

  1. 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.

    Article  PubMed  CAS  Google Scholar 

  2. 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.

    Article  CAS  Google Scholar 

  3. 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.

    Google Scholar 

  4. 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.

    Article  CAS  Google Scholar 

  5. 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. 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.

    Chapter  Google Scholar 

  7. 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.

    Article  PubMed  Google Scholar 

  8. 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.

    Article  Google Scholar 

  9. 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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

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

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

Parts of this study have been presented previously at the 16th International Society for Quality of Life Research, the 8th European Conference on Health Economics, and the International Society for Pharmacoeconomics and Outcomes Research 4th Asia–Pacific Conference. This study was supported by the Centers for Disease Control and Prevention, Grant # U50/CCU613236-10.

Author information

Authors and Affiliations

  1. Division of Pharmaceutical Evaluation and Policy, Department of Pharmacy Practice, University of Arkansas for Medical Sciences, 4301 W. Markham St., #522, Little Rock, AR, 72205, USA

    Nalin Payakachat

  2. Department of Health Policy and Management, University of Arkansas for Medical Sciences, Little Rock, AR, USA

    J. Mick Tilford

  3. Institute of Health Policy and Management, Erasmus University, Rotterdam, The Netherlands

    Werner BF Brouwer & N. Job van Exel

  4. Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA

    Scott D. Grosse

Authors
  1. Nalin Payakachat
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. J. Mick Tilford
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Werner BF Brouwer
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. N. Job van Exel
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Scott D. Grosse
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Nalin Payakachat.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 1 (PDF 31 kb)

Rights and permissions

Reprints and permissions

About this article

Cite this article

Payakachat, N., Tilford, J.M., Brouwer, W.B. et al. Measuring health and well-being effects in family caregivers of children with craniofacial malformations. Qual Life Res 20, 1487–1495 (2011). https://doi.org/10.1007/s11136-011-9870-2

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-011-9870-2

Keywords

Search

Navigation