Article2008

Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions

Arieke J. Janse · Gerben Sinnema · Cuno S.P.M. Uiterwaal · Jan L. L. Kimpen · Reinoud J. B. J. Gemke

59 citations0/0 files storedActa Paediatrica

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Abstract

AIM: Quality of life assessments can be helpful to estimate the well-being of chronically ill children. The aim of this study was to investigate the differences in perception of health-related quality of life (HRQoL) among children, parents and paediatricians at the time of diagnosis and after initial treatment in four chronic diseases. METHODS: HRQoL was assessed with the Health Utilities Index mark 3 (HUI3). The HUI3 consists of eight attributes (vision, hearing, speech, ambulation, dexterity, emotion, cognition and pain). RESULTS: Nineteen paediatricians and 60 patients (aged 10-17 years) and their parents with newly diagnosed acute lymphoblastic leukaemia, juvenile idiopathic arthritis, asthma or with cystic fibrosis admitted for pneumonia participated in the study. Health and well-being perceptions were clearly different among paediatricians, parents and patients, both at diagnosis and after initial treatment. Perception differences were more prominent in the subjective attributes, emotion and pain. The agreement for these attributes was 23% and 5%, respectively. Paediatricians assessed the patients to have less pain than the patients and parents did. The reverse was true for the attribute emotion. At follow-up, the agreement was higher for the attributes ambulation and pain. CONCLUSION: At the onset of a chronic disease and after initial treatment, paediatricians, parents and children have different perceptions of the child's quality of life, particularly as to the subjective attributes pain and emotion. In view of these differences in perception among patients, their caregivers and paediatricians, this study suggests that whenever possible, multi-respondent assessment of HRQoL should be considered.

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1977The Measurement of Observer Agreement for Categorical Data 2002Multiattribute and Single-Attribute Utility Functions for the Health Utilities Index Mark 3 System 2001Can parents rate their child's health-related quality of life? Results of a systematic review 2004Quality of life: patients and doctors don't always agree: a meta-analysis 1994A MULTIATTRIBUTE APPROACH TO HEALTH-STATUS MEASUREMENT AND CLINICAL MANAGEMENT ILLUSTRATED BY AN APPLICATION TO BRAIN-TUMORS IN CHILDHOOD 1999Applicability of the Health Utilities Index to a Population of Childhood Survivors of Central Nervous System Tumours in the U.K.2001Measuring health status using the Health Utilities Index

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