ORIGINAL ARTICLE

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

A J Janse¹, G Sinnema², C S P M Uiterwaal³, J L L Kimpen¹, R J B J Gemke⁴

¹ Department of Paediatrics, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Netherlands
² Department of Paediatric Psychology, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, Netherlands
³ Julius Centre for Health Sciences and Primary Care, University Medical Centre Utrecht, Netherlands
⁴ Department of Paediatrics, VU University Medical Centre, Amsterdam, Netherlands

Correspondence to:
Correspondence to:
Dr G Sinnema
Department of Paediatric Psychology, KA.00.004.0, Wilhelmina Children’s Hospital, University Medical Centre Utrecht, PO Box 85090, 3508 AB Utrecht, Netherlands; G.Sinnema{at}wkz.azu.nl

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.

Abbreviations: ALL, acute lymphoblastic leukaemia; CF, cystic fibrosis; CF-adm, children with CF admitted for pneumonia; HUI3, Health Utilities Index mark 3; JIA, juvenile chronic arthritis; QoL, quality of life

Keywords: Health Utilities Index; chronically ill; longitudinal; quality of life

CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?

Relevant Article

Atoms

Howard Bauchner
Arch. Dis. Child. 2005 90: 441a. [Extract] [Full Text] [PDF]

This article has been cited by other articles:

• Marino, B. S., Tomlinson, R. S., Drotar, D., Claybon, E. S., Aguirre, A., Ittenbach, R., Welkom, J. S., Helfaer, M. A., Wernovsky, G., Shea, J. A. (2009). Quality-of-Life Concerns Differ Among Patients, Parents, and Medical Providers in Children and Adolescents With Congenital and Acquired Heart Disease. Pediatrics 123: e708-e715 [Abstract] [Full Text]  
• Oberdorfer, P., Louthrenoo, O., Puthanakit, T., Sirisanthana, V., Sirisanthana, T. (2008). Quality of Life Among HIV-Infected Children in Thailand. J Int Assoc Physicians AIDS Care (Chic Ill) 7: 141-147 [Abstract]  
• Morrow, A M, Quine, S, Loughlin, E V O, Craig, J C (2008). Different priorities: a comparison of parents' and health professionals' perceptions of quality of life in quadriplegic cerebral palsy. Arch. Dis. Child. 93: 119-125 [Abstract] [Full Text]  
• de Cassia Xavier Balda, R., Guinsburg, R. (2007). Perceptions of Neonatal Pain. NeoReviews 8: e533-e542 [Abstract] [Full Text]  
• Moorthy, L., Peterson, M., Harrison, M., Onel, K., Lehman, T. (2007). Review: Quality of life in children with systemic lupus erythematosus: a review. Lupus 16: 663-669 [Abstract]  
• Mussaffi, H, Omer, R, Prais, D, Mei-Zahav, M, Weiss-Kasirer, T, Botzer, Z, Blau, H (2007). Computerised paediatric asthma quality of life questionnaires in routine care. Arch. Dis. Child. 92: 678-682 [Abstract] [Full Text]