Skip to main content
main-content
Top

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in: Quality of Life Research 5/2016

01-05-2016

Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes

Auteurs: Joyce P. Yi-Frazier, Marisa E. Hilliard, Nora F. Fino, Michelle J. Naughton, Angela D. Liese, Christine W. Hockett, Korey K. Hood, Catherine Pihoker, Michael Seid, Wei Lang, Jean M. Lawrence

Gepubliceerd in: Quality of Life Research | Uitgave 5/2016

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

Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self- and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 diabetes (T2D) and to evaluate associations between discrepancies, PedsQL scores, and glycemic control (HbA1c).

Methods

Youth and parents in the SEARCH for Diabetes in Youth Study (T1D: age 5–18, n = 3402; T2D: age 8–18, n = 353) completed the PedsQL Generic and Diabetes Modules, and youth provided a blood sample to assess HbA1c. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbA1c were evaluated.

Results

Discrepancies existed between youth and parent-proxy reports of generic and diabetes PedsQL scores in T1D and T2D (all p values < 0.01). Higher (more favorable) ratings were reported by youth except for those 5–7-years old, where parents’ scores were higher. When parent-proxy scores were higher, discrepancies were largest when the child reported low PedsQL scores. Higher HbA1c was associated with larger discrepancies (youth scores higher) for adolescents with T1D.

Conclusions

Discrepant PedsQL ratings suggest that parents may often underestimate youths’ HRQOL except in the youngest children. Although examining both reports is optimal, the youth report should be prioritized, particularly for young children with T1D and for adolescents with either T1D or T2D.

Met onderstaand(e) abonnement(en) heeft u direct toegang:

BSL Podotherapeut Totaal

Binnen de bundel kunt u gebruik maken van boeken, tijdschriften, e-learnings, web-tv's en uitlegvideo's. BSL Podotherapeut Totaal is overal toegankelijk; via uw PC, tablet of smartphone.

Literatuur
1.
go back to reference Cameron, F. J. (2003). The impact of diabetes on health-related quality of life in children and adolescents. Pediatric Diabetes, 4, 132–136. CrossRefPubMed Cameron, F. J. (2003). The impact of diabetes on health-related quality of life in children and adolescents. Pediatric Diabetes, 4, 132–136. CrossRefPubMed
2.
go back to reference Allan, C. L., Flett, B., & Dean, H. J. (2008). Quality of life in First Nation youth with Type 2 diabetes. Maternal and Child Health Journal, 12, 103–109. CrossRefPubMed Allan, C. L., Flett, B., & Dean, H. J. (2008). Quality of life in First Nation youth with Type 2 diabetes. Maternal and Child Health Journal, 12, 103–109. CrossRefPubMed
3.
go back to reference Lawrence, J. M., Yi-Frazier, J. P., Black, M. H., et al. (2012). Demographic and clinical correlates of diabetes-related quality of life among youth with type 1 diabetes. Journal of Pediatrics, 161, 201–207. CrossRefPubMedPubMedCentral Lawrence, J. M., Yi-Frazier, J. P., Black, M. H., et al. (2012). Demographic and clinical correlates of diabetes-related quality of life among youth with type 1 diabetes. Journal of Pediatrics, 161, 201–207. CrossRefPubMedPubMedCentral
4.
go back to reference de Wit, M., Winterdijk, P., Aanstoot, H. J., et al. (2012). Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: The MIND Youth Questionnaire (MY-Q). Pediatric Diabetes, 13, 638–646. CrossRefPubMed de Wit, M., Winterdijk, P., Aanstoot, H. J., et al. (2012). Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: The MIND Youth Questionnaire (MY-Q). Pediatric Diabetes, 13, 638–646. CrossRefPubMed
5.
go back to reference Varni, J. W., Burwinkle, T. M., Jacobs, J. R., et al. (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. CrossRefPubMed Varni, J. W., Burwinkle, T. M., Jacobs, J. R., et al. (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. CrossRefPubMed
6.
go back to reference Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health & Quality of Life Outcomes, 5, 2. CrossRef Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related quality of life: an analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health & Quality of Life Outcomes, 5, 2. CrossRef
7.
go back to reference Sattoe, J. N., van Staa, A., & Moll, H. A. (2012). On your own feet research group: The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents. Health & Quality of Life Outcomes, 10, 10. CrossRef Sattoe, J. N., van Staa, A., & Moll, H. A. (2012). On your own feet research group: The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents. Health & Quality of Life Outcomes, 10, 10. CrossRef
8.
go back to reference Eiser, C., Varni, J.W. (2013). Health-related quality of life and symptom reporting: Similarities and differences between children and their parents. European Journal of Pediatrics, 172(10), 1299–1304. Eiser, C., Varni, J.W. (2013). Health-related quality of life and symptom reporting: Similarities and differences between children and their parents. European Journal of Pediatrics, 172(10), 1299–1304.
9.
go back to reference Theunissen, N.C., Vogels, T.G., Koopman, H.M., et al. (1998). The proxy problem: child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397. Theunissen, N.C., Vogels, T.G., Koopman, H.M., et al. (1998). The proxy problem: child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397.
10.
go back to reference Nansel, T. R., Weissberg-Benchell, J., Wysocki, T., et al. (2008). Quality of life in children with Type 1 diabetes: A comparison of general and diabetes-specific measures and support for a unitary diabetes quality-of-life construct. Diabetic Medicine, 25, 1316–1323. PubMedPubMedCentral Nansel, T. R., Weissberg-Benchell, J., Wysocki, T., et al. (2008). Quality of life in children with Type 1 diabetes: A comparison of general and diabetes-specific measures and support for a unitary diabetes quality-of-life construct. Diabetic Medicine, 25, 1316–1323. PubMedPubMedCentral
11.
go back to reference Hilliard, M. E., Mann, K. A., Peugh, J. L., & Hood, K. K. (2013). How poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control. Patient Education and Counseling, 91, 120–125. CrossRefPubMedPubMedCentral Hilliard, M. E., Mann, K. A., Peugh, J. L., & Hood, K. K. (2013). How poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control. Patient Education and Counseling, 91, 120–125. CrossRefPubMedPubMedCentral
12.
go back to reference Silva, N., Crespo, C., Carona, C., Bullinger, M., & Canavarro, M. C. (2015). Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma. Child: Care, Health and Development, 41, 112–121. Silva, N., Crespo, C., Carona, C., Bullinger, M., & Canavarro, M. C. (2015). Why the (dis)agreement? Family context and child-parent perspectives on health-related quality of life and psychological problems in paediatric asthma. Child: Care, Health and Development, 41, 112–121.
13.
go back to reference Pan, R., Egberts, M. R., Nascimento, L. C., et al. (2015). Health-related quality of life in adolescent survivors of burns: Agreement on self-reported and mothers’ and fathers’ perspectives. Burns, 41, 1107–1113. CrossRefPubMed Pan, R., Egberts, M. R., Nascimento, L. C., et al. (2015). Health-related quality of life in adolescent survivors of burns: Agreement on self-reported and mothers’ and fathers’ perspectives. Burns, 41, 1107–1113. CrossRefPubMed
14.
go back to reference Murray, C. B., Holmbeck, G. N., Ros, A. M., et al. (2015). A longitudinal examination of health-related quality of life in children and adolescents with spina bifida. Journal of Pediatric Psychology, 40, 419–430. CrossRefPubMed Murray, C. B., Holmbeck, G. N., Ros, A. M., et al. (2015). A longitudinal examination of health-related quality of life in children and adolescents with spina bifida. Journal of Pediatric Psychology, 40, 419–430. CrossRefPubMed
15.
go back to reference Hamman, R. F., Bell, R. A., Dabelea, D., et al. (2014). The SEARCH for diabetes in youth study: Rationale, findings, and future directions. Diabetes Care, 37, 3336–3344. CrossRefPubMedPubMedCentral Hamman, R. F., Bell, R. A., Dabelea, D., et al. (2014). The SEARCH for diabetes in youth study: Rationale, findings, and future directions. Diabetes Care, 37, 3336–3344. CrossRefPubMedPubMedCentral
16.
go back to reference SEARCH Study Group. (2004). SEARCH for Diabetes in Youth: a multicenter study of the prevalence, incidence and classification of diabetes mellitus in youth. Controlled Clinical Trials, 25, 458–471. CrossRef SEARCH Study Group. (2004). SEARCH for Diabetes in Youth: a multicenter study of the prevalence, incidence and classification of diabetes mellitus in youth. Controlled Clinical Trials, 25, 458–471. CrossRef
17.
go back to reference Paris, C. A., Imperatore, G., Klingensmith, G., et al. (2009). Predictors of insulin regimens and impact on outcomes in youth with type 1 diabetes: The SEARCH for diabetes in youth study. Journal of Pediatrics, 155, 183–189. CrossRefPubMed Paris, C. A., Imperatore, G., Klingensmith, G., et al. (2009). Predictors of insulin regimens and impact on outcomes in youth with type 1 diabetes: The SEARCH for diabetes in youth study. Journal of Pediatrics, 155, 183–189. CrossRefPubMed
18.
go back to reference Hilliard, M. E., Monaghan, M., Cogen, F. R., & Streisand, R. (2011). Parent stress and child behaviour among young children with type 1 diabetes. Child: Care, Health and Development, 37, 224–232. Hilliard, M. E., Monaghan, M., Cogen, F. R., & Streisand, R. (2011). Parent stress and child behaviour among young children with type 1 diabetes. Child: Care, Health and Development, 37, 224–232.
19.
go back to reference de Wit, M., Delemarre-van de Waal, H. A., Bokma, J. A., et al. (2008). Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: a randomized controlled trial. Diabetes Care, 31, 1521–1526. CrossRefPubMedPubMedCentral de Wit, M., Delemarre-van de Waal, H. A., Bokma, J. A., et al. (2008). Monitoring and discussing health-related quality of life in adolescents with type 1 diabetes improve psychosocial well-being: a randomized controlled trial. Diabetes Care, 31, 1521–1526. CrossRefPubMedPubMedCentral
Metagegevens
Titel
Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes
Auteurs
Joyce P. Yi-Frazier
Marisa E. Hilliard
Nora F. Fino
Michelle J. Naughton
Angela D. Liese
Christine W. Hockett
Korey K. Hood
Catherine Pihoker
Michael Seid
Wei Lang
Jean M. Lawrence
Publicatiedatum
01-05-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-1158-5