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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2007

Open Access 01-12-2007 | Research

Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands

Authors: Jennifer van Dijk, Jaap Huisman, Annette C Moll, Antoinette YN Schouten-van Meeteren, Pieter D Bezemer, Peter J Ringens, Peggy T Cohen-Kettenis, Saskia M Imhof

Published in: Health and Quality of Life Outcomes | Issue 1/2007

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Abstract

Background

To assess health-related quality of life (HRQoL) in children (8–11 years) and adolescents (12–18 years) who survived retinoblastoma (RB), by means of the KIDSCREEN self-report questionnaire and the proxy-report version.

Methods

This population-based cross-sectional study (participation rate 70%) involved 65 RB survivors (8–18 years) and their parents. Child/adolescents' and parents' perception of their youth's HRQoL was assessed using the KIDSCREEN, and the results were compared with Dutch reference data. Relations with gender, age, marital status of the parents, and visual acuity were analyzed.

Results

RB survivors reported better HRQoL than did the Dutch reference group on the dimensions "moods and emotions" and "autonomy". Increased ratings of HRQoL in RB survivors were mainly seen in perceptions of the younger children and adolescent girls. RB survivors with normal visual acuity scored higher on "physical well-being" than visually impaired survivors. Age was negatively associated with the dimensions "psychological well-being", "self-perception" (according to the child and parent reports) and "parent relations and home life" (according to the child). "Self-perception" was also negatively associated with visual acuity (according to the child). Only parents of young boys surviving RB reported lower on "autonomy" than the reference group, and parents of low visual acuity and blind RB survivors reported higher on "autonomy" than parents of visually unimpaired survivors. Survivors' perceptions and parents' perceptions correlated poorly on all HRQoL dimensions.

Conclusion

RB survivors reported a very good HRQoL compared with the Dutch reference group. The perceptions related to HRQoL differ substantially between parents and their children, i.e. parents judge the HRQoL of their child to be relatively poorer. Although the results are reassuring, additional factors of HRQoL that may have more specific relevance, such as psychological factors or coping skills, should be explored.
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Metadata
Title
Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands
Authors
Jennifer van Dijk
Jaap Huisman
Annette C Moll
Antoinette YN Schouten-van Meeteren
Pieter D Bezemer
Peter J Ringens
Peggy T Cohen-Kettenis
Saskia M Imhof
Publication date
01-12-2007
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2007
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-5-65

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