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. 2005 May;90(5):486–491. doi: 10.1136/adc.2004.051722

Quality of life in chronic illness: perceptions of parents and paediatricians

A Janse 1, G Sinnema 1, C Uiterwaal 1, J Kimpen 1, R Gemke 1
PMCID: PMC1720390  PMID: 15851430

Abstract

Aims: To investigate the differences in perception of quality of life between parents of chronically ill children and paediatricians at diagnosis and follow up. Quality of life was assessed using the (HUI3).

Methods: Longitudinal study (July 1999–January 2002) of 37 paediatricians and 181 parents of patients (children aged 1–17 years) with cystic fibrosis admitted for a pneumonia or patients with newly diagnosed acute lymphatic leukaemia, juvenile idiopathic arthritis, or asthma. Main outcome measure was percentage agreement on the attributes of the HUI3 between parents and paediatricians.

Results: Differences in perception of health and wellbeing between paediatricians and parents of children with a chronic disease were found, not only at diagnosis but also after a period of follow up. Differences were particularly clear in the subjective attributes emotion (range of agreement 28–68%) and pain/discomfort (range of agreement 11–33%). In all patient groups, at baseline and follow up, the paediatrician assessed the patient to have less pain/discomfort in comparison to the parents. Despite a prolonged patient- paediatrician relationship, differences at follow up did not decrease compared to baseline.

Conclusion: At the onset of a chronic disease, but also after a period of follow up, quality of life of paediatric patients may be misunderstood by healthcare professionals, especially in the subjective attributes. Systematic assessment of quality of life may contribute to better understanding between physicians and parents.

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Figure 1.

Figure 1

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 Percentage agreement between paediatricians and parents of chronically ill children (ALL, asthma, CF, and JIA) for each HUI3 attribute at baseline and follow up.

Figure 2.

Figure 2

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 Number of pairs of disagreement between paediatricians and parents of chronically ill children (ALL, asthma, CF, and JIA) for the HUI3 attributes speech, ambulation, emotion, and pain/discomfort. The HUI3 attribute levels of the parents were subtracted from the levels of the paediatricians. The positive bars represent the number of pairs for each attribute where the paediatrician scored a higher level of impairment within attributes than the parent at baseline (1; black) and at follow up (2; dark grey). The negative bars represent the number of pairs where the parent scored a higher level of disturbances within attributes than the paediatrician at baseline (1; grey) and at follow up (2; white).

Selected References

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