Skip to main content
Top
Published in: Quality of Life Research 1/2009

Open Access 01-02-2009

Impact of family income and sickle cell disease on the health-related quality of life of children

Authors: Julie A. Panepinto, Nicholas M. Pajewski, Lisa M. Foerster, Svapna Sabnis, Raymond G. Hoffmann

Published in: Quality of Life Research | Issue 1/2009

Login to get access

Abstract

Purpose

The objective of this study was to determine the impact of family income and sickle cell disease on the health-related quality of life (HRQL) of children.

Methods

This was a cross-sectional study of children with and without sickle cell disease. Participants completed the PedsQL™ generic core scales parent-proxy or child self-report questionnaire during a routine clinic visit. HRQL was the primary outcome measured. Family income and sickle cell disease were the primary independent variables of interest.

Results

A total of 104 children with sickle cell disease and 74 without disease participated in the study. After adjusting for family income, patient age, and the presence of co-morbidities, children with severe sickle cell disease had increased odds of worse overall HRQL (parent-proxy HRQL report odds ratio [OR] 4.0) and physical HRQL (parent-proxy report OR 5.67, child self-report OR 3.33) compared to children without sickle cell disease.

Conclusions

Children with sickle cell disease have significantly impaired HRQL, even after considering the potential detrimental effect of family income on HRQL. Targeted interventions to improve these children’s HRQL are warranted.
Literature
1.
go back to reference Guyatt, G. H., Ferrans, C. E., Halyard, M. Y., Revicki, D. A., Symonds, T. L., Varricchio, C. G., et al. (2007). Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. Mayo Clinic Proceedings, 82, 1229–1239.PubMedCrossRef Guyatt, G. H., Ferrans, C. E., Halyard, M. Y., Revicki, D. A., Symonds, T. L., Varricchio, C. G., et al. (2007). Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. Mayo Clinic Proceedings, 82, 1229–1239.PubMedCrossRef
2.
go back to reference Kater, A. P., Heijboer, H., Peters, M., Vogels, T., Prins, M. H., & Heymans, H. S. (1999). Quality of life in children with sickle cell disease in Amsterdam area. Nederlands Tijdschrift voor Geneeskunde, 143, 2049–2053.PubMed Kater, A. P., Heijboer, H., Peters, M., Vogels, T., Prins, M. H., & Heymans, H. S. (1999). Quality of life in children with sickle cell disease in Amsterdam area. Nederlands Tijdschrift voor Geneeskunde, 143, 2049–2053.PubMed
3.
9.
go back to reference Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329–341. doi:0.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329–341. doi:0.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2.PubMedCrossRef
10.
go back to reference Varni, J. W., Burwinkle, T. M., Jacobs, J. R., Gottschalk, M., Kaufman, F., & Jones, K. L. (2003). The PedsQL in type 1 and type 2 diabetes: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and type 1 Diabetes Module. Diabetes Care, 26, 631–637. doi:10.2337/diacare.26.3.631.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Jacobs, J. R., Gottschalk, M., Kaufman, F., & Jones, K. L. (2003). The PedsQL in type 1 and type 2 diabetes: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and type 1 Diabetes Module. Diabetes Care, 26, 631–637. doi:10.​2337/​diacare.​26.​3.​631.PubMedCrossRef
11.
go back to reference Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090–2106. doi:10.1002/cncr.10428.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090–2106. doi:10.​1002/​cncr.​10428.PubMedCrossRef
12.
go back to reference Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory generic core scales and Asthma Module. Journal of Behavioral Medicine, 27, 297–318. doi:10.1023/B:JOBM.0000028500.53608.2c.PubMedCrossRef Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory generic core scales and Asthma Module. Journal of Behavioral Medicine, 27, 297–318. doi:10.​1023/​B:​JOBM.​0000028500.​53608.​2c.PubMedCrossRef
13.
go back to reference Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J., & Szer, I. S. (2002). The PedsQL in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis and Rheumatism, 46, 714–725. doi:10.1002/art.10095.PubMedCrossRef Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J., & Szer, I. S. (2002). The PedsQL in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis and Rheumatism, 46, 714–725. doi:10.​1002/​art.​10095.PubMedCrossRef
14.
15.
16.
go back to reference Valenzuela, J. M., Patino, A. M., McCullough, J., Ring, C., Sanchez, J., Eidson, M., et al. (2006). Insulin pump therapy and health-related quality of life in children and adolescents with type 1 diabetes. Journal of Pediatric Psychology, 31, 650–660. doi:10.1093/jpepsy/jsj088.PubMedCrossRef Valenzuela, J. M., Patino, A. M., McCullough, J., Ring, C., Sanchez, J., Eidson, M., et al. (2006). Insulin pump therapy and health-related quality of life in children and adolescents with type 1 diabetes. Journal of Pediatric Psychology, 31, 650–660. doi:10.​1093/​jpepsy/​jsj088.PubMedCrossRef
18.
go back to reference Charache, S., Terrin, M. L., Moore, R. D., Dover, G. J., Barton, F. B., Eckert, S. V., et al. (1995). Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of hydroxyurea in sickle cell anemia. The New England Journal of Medicine, 332, 1317–1322. doi:10.1056/NEJM199505183322001.PubMedCrossRef Charache, S., Terrin, M. L., Moore, R. D., Dover, G. J., Barton, F. B., Eckert, S. V., et al. (1995). Effect of hydroxyurea on the frequency of painful crises in sickle cell anemia. Investigators of the Multicenter Study of hydroxyurea in sickle cell anemia. The New England Journal of Medicine, 332, 1317–1322. doi:10.​1056/​NEJM199505183322​001.PubMedCrossRef
20.
22.
go back to reference von Rueden, U., Gosch, A., Rajmil, L., Bisegger, C., & Ravens-Sieberer, U. (2006). Socioeconomic determinants of health related quality of life in childhood and adolescence: Results from a European study. Journal of Epidemiology and Community Health, 60, 130–135. doi:10.1136/jech.2005.039792.CrossRef von Rueden, U., Gosch, A., Rajmil, L., Bisegger, C., & Ravens-Sieberer, U. (2006). Socioeconomic determinants of health related quality of life in childhood and adolescence: Results from a European study. Journal of Epidemiology and Community Health, 60, 130–135. doi:10.​1136/​jech.​2005.​039792.CrossRef
23.
go back to reference Felder-Puig, R., Baumgartner, M., Topf, R., Gadner, H., & Formann, A. K. (2008). Health-related quality of life in Austrian elementary school children. Medical Care, 46, 432–439.PubMed Felder-Puig, R., Baumgartner, M., Topf, R., Gadner, H., & Formann, A. K. (2008). Health-related quality of life in Austrian elementary school children. Medical Care, 46, 432–439.PubMed
24.
go back to reference Erickson, S. R., Munzenberger, P. J., Plante, M. J., Kirking, D. M., Hurwitz, M. E., & Vanuya, R. Z. (2002). Influence of sociodemographics on the health-related quality of life of pediatric patients with asthma and their caregivers. The Journal of Asthma, 39, 107–117. doi:10.1081/JAS-120002192.PubMedCrossRef Erickson, S. R., Munzenberger, P. J., Plante, M. J., Kirking, D. M., Hurwitz, M. E., & Vanuya, R. Z. (2002). Influence of sociodemographics on the health-related quality of life of pediatric patients with asthma and their caregivers. The Journal of Asthma, 39, 107–117. doi:10.​1081/​JAS-120002192.PubMedCrossRef
25.
go back to reference Van Dellen, Q. M., Stronks, K., Bindels, P. J., Ory, F. G., Bruil, J., & Van Aalderen, W. M. (2007). Health-related quality of life in children with asthma from different ethnic origins. The Journal of Asthma, 44, 125–131. doi:10.1080/02770900601182459.PubMedCrossRef Van Dellen, Q. M., Stronks, K., Bindels, P. J., Ory, F. G., Bruil, J., & Van Aalderen, W. M. (2007). Health-related quality of life in children with asthma from different ethnic origins. The Journal of Asthma, 44, 125–131. doi:10.​1080/​0277090060118245​9.PubMedCrossRef
26.
go back to reference Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43. doi:10.1186/1477-7525-5-43.PubMedCrossRef Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43. doi:10.​1186/​1477-7525-5-43.PubMedCrossRef
27.
go back to reference Sprangers, M. A., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743–760. doi:10.1016/0895-4356(92)90052-O.PubMedCrossRef Sprangers, M. A., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743–760. doi:10.​1016/​0895-4356(92)90052-O.PubMedCrossRef
29.
go back to reference Krieger, N. (1992). Overcoming the absence of socioeconomic data in medical records: Validation and application of a census-based methodology. American Journal of Public Health, 82, 703–710.PubMedCrossRef Krieger, N. (1992). Overcoming the absence of socioeconomic data in medical records: Validation and application of a census-based methodology. American Journal of Public Health, 82, 703–710.PubMedCrossRef
Metadata
Title
Impact of family income and sickle cell disease on the health-related quality of life of children
Authors
Julie A. Panepinto
Nicholas M. Pajewski
Lisa M. Foerster
Svapna Sabnis
Raymond G. Hoffmann
Publication date
01-02-2009
Publisher
Springer Netherlands
Published in
Quality of Life Research / Issue 1/2009
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-008-9412-8

Other articles of this Issue 1/2009

Quality of Life Research 1/2009 Go to the issue