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

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

doi:10.1007/s11136-015-1158-5

- Add this to...
- Twitter
- Facebook
- Google Bookmarks
- LinkedIn

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

Published Date:

Oct 14 2015

Publisher's site:

http://dx.doi.org/10.1007/s11136-015-1158-5 New Site Icon

Source:

Qual Life Res. 25(5):1113-1121.

[PDF-136.48 KB]

Details:

Personal Authors:

Yi-Frazier, Joyce P. ; Hilliard, Marisa E. ; Fino, Nora F. ; Naughton, Michelle J. ; Liese, Angela D. ; ... More ▼

Keywords:

[+]

Pubmed ID:

26466834

Pubmed Central ID:

PMC4936832

Description:

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.

Document Type:

Journal Article

Collection(s):

CDC Public Access

Funding:

Supporting Files:

nihms-797817.nxml

application/octet-stream

No Related Documents.

You May Also Like:

Health survey research methods; conference proceedings

Personal Author:

Warnecke, Richard B.

Corporate Author:

Conference on Health Survey Research Methods, (6th : 1995 : Breckenridge, Colo.). National Center for Health Statistics (U.S.).

Published:

April 1996

Series:

DHHS publication ; no. (PHS) 96-1013

Description:

"Proceedings of the Sixth Conference on Health Survey Research Methods, held in Breckenridge, Colorado, June 24-26, 1995"--Foreword.

File Type:

[PDF - 3.09 MB]
A Partnered Approach for Structured Observation to Assess the Environment of a Neighborhood With High Diabetes Rates

Personal Author:

Kleinman, Lawrence C.; Lutz, David; Plumb, Ellen J.; Barkley, Pearl; Nazario, Hector R.; Ramos, Michelle A.; Horowitz, Carol R.;

Published:

2011

Source:

Prog Community Health Partnersh. 2011; 5(3):249-259.

Description:

Background : The Communities IMPACT Diabetes Center uses partnered methods to address diabetes-related conditions among African Americans and Latinos in East Harlem, New York. : Objectives : To describe a novel, partnered approach that integrates sim...

File Type:

[PDF - 3.31 MB]
Identification of Minimal Clinically Important Difference Scores of the PedsQL in Children, Adolescents, and Young Adults With Type 1 and Type 2 Diabetes

Personal Author:

Hilliard, Marisa E.; Lawrence, Jean M.; Modi, Avani C.; Anderson, Andrea; Crume, Tessa; Dolan, Lawrence M.; Merchant, Anwar T.; Yi-Frazier, Joyce P.; Hood, Korey K.;

Corporate Author:

for the SEARCH for Diabetes in Youth Study Group*

Published:

Jan 22 2013

Source:

Diabetes Care. 2013; 36(7):1891-1897.

Description:

OBJECTIVE : To establish minimal clinically important difference (MCID) scores representing the smallest detectable change in quality of life (QOL), using the Pediatric Quality of Life Inventory (PedsQL) Generic Core and Diabetes Module among youth w...

File Type:

[PDF - 135.52 KB]
SaludABLEOmaha: Improving Readiness to Address Obesity Through Healthy Lifestyle in a Midwestern Latino Community, 2011–2013

Personal Author:

Frerichs, Leah; Brittin, Jeri; Robbins, Regina; Steenson, Sharalyn; Stewart, Catherine; Fisher, Christopher; Huang, Terry T-K;

Published:

Feb 12 2015

Source:

Prev Chronic Dis. 12.

Description:

Background : A community’s readiness for change is a precursor to the effective application of evidence-based practices for health promotion. Research is lacking regarding potential strategies to improve readiness to address obesity-related health ...

File Type:

[PDF - 445.78 KB]
Adolescent distinctions between quality of life and self-rated health in quality of life research

Personal Author:

Zullig, Keith J; Valois, Robert F; Drane, J Wanzer;

Published:

Oct 25 2005

Source:

Health Qual Life Outcomes. 2005; 3:64.

Description:

Background : In adult quality of life (QOL) research, the QOL construct appears to differ from self-rated health status. Although increased QOL continues to be recognized as an important outcome in health promotion and medical intervention, little re...

File Type:

[PDF - 280.06 KB]