Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy and healthcare professional-proxy reports

Article


Constantinou, C., Payne, N. and Inusa, B. 2015. Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy and healthcare professional-proxy reports. British Journal of Health Psychology. 20 (2), pp. 290-304. https://doi.org/10.1111/bjhp.12099
TypeArticle
TitleAssessing the quality of life of children with sickle cell anaemia using self-, parent-proxy and healthcare professional-proxy reports
AuthorsConstantinou, C., Payne, N. and Inusa, B.
Abstract

Objectives
The quality of life (QoL) of children with sickle cell anaemia (SCA) in the United Kingdom has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether (1) child self-reports of QoL using a discrepancy measure (the Generic Children's QoL Measure; GCQ) are lower than those from healthy children, (2) proxy reports from parents and health care professionals are lower than child self-reports, and (3) demographic and disease severity indicators are related to QoL.
Design and methods
An interdependent groups, cross-sectional design was implemented. Seventy-four children with SCA, their parent, and members of their health care team completed the GCQ. Demographic and disease severity indicators were recorded. GCQ data from healthy children were obtained from the UK Data Archive.
Results
Contrary to past research, when examining generic discrepancy QoL, children with SCA did not report a lower QoL than healthy children, and parent- and health care professional-proxy reports were not lower than child self-reports. Few of the demographic and disease severity indicators were related to QoL.
Conclusions
Proxy reports may be used to gain a more complete picture of QoL, but should not be a substitute for self-reports. The explanation for the relatively high levels of QoL reported is not clear, but children with SCA may have realistic expectations about their ideal-self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL.

Research GroupApplied Health Psychology group
PublisherThe British Psychological Society
JournalBritish Journal of Health Psychology
ISSN1359-107X
Electronic2044-8287
Publication dates
Online23 Apr 2014
PrintMay 2015
Publication process dates
Deposited26 Apr 2016
Accepted17 Mar 2014
Submitted19 Jun 2013
Output statusPublished
Accepted author manuscript
File Access Level
Open
Copyright Statement

This is the peer reviewed version of the following article: Constantinou, C., Payne, N. and Inusa, B. (2015), Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports. British Journal of Health Psychology, 20: 290–304. doi: 10.1111/bjhp.12099, which has been published in final form at http://dx.doi.org/10.1111/bjhp.12099 . This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-828039.html#terms).

Digital Object Identifier (DOI)https://doi.org/10.1111/bjhp.12099
LanguageEnglish
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