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PEDIATRICS Vol. 111 No. 2 February 2003, pp. 346-350

Early Versus Late Diagnosis: Psychological Impact on Parents of Children With Cystic Fibrosis

Objectives. To explore the relationship between the period preceding diagnosis and the way parents of children with cystic fibrosis (CF) experience and handle their child’s disease.

Design. A retrospective study.

Setting. CF Center "Noordwest Nederland," the Netherlands.

Participants. Participants were the parents of children <13 years old with CF who were treated at the CF Center "Noordwest Nederland." The participants were divided into 2 groups according to the duration of prediagnostic period: <3 months (defined as early diagnosis) and ≥3 months (defined as late diagnosis).

Main Outcome Measures. Experience of the prediagnostic period, contact with the medical profession, coping, future perspective, and attitudes toward neonatal screening for CF.

Results. Parents of 55 children were eligible for study participation; 45 were enrolled. Retrospectively, the period preceding an early diagnosis was less negatively experienced by parents than the period preceding a late diagnosis. Parents of children with an early diagnosis had retrospectively more confidence in the medical profession before confirmation of diagnosis. In general, parents in this study used adaptive coping styles. Duration of prediagnostic period was not significantly related to future perspective. Hopelessness seemed to be mainly determined by a severe course of disease as experienced by the parents. Ninety-eight percent of all parents were in favor of neonatal screening for CF.

Conclusions. A short prediagnostic period is associated with less negative feelings and increased confidence in the medical profession among parents of children with CF. Neonatal screening for CF may be of benefit to parents by removing the stress of a delayed diagnosis.

Maria E. Mérelle, MD, PhD*, Jaap Huisman, PhD{ddagger}, Angélika Alderden-van der Vecht, MS*, Froukje Taat, MS*, Dick Bezemer, PhD§, Rupino W. Griffioen, MD||, Govert Brinkhorst, MD and Jeannette E. Dankert-Roelse, MD, PhD*

* Cystic Fibrosis Center "Noordwest Nederland", Departments of Paediatrics
{ddagger} Medical Psychology, Vrije Universiteit Medical Center Amsterdam, the Netherlands
§ Department of Clinical Epidemiology and Biostatistics, Vrije Universiteit, Amsterdam, the Netherlands
|| Department of Paediatrics, Emma Children’s Hospital, Academic Medical Center, Amsterdam, the Netherlands
Department of Paediatrics, Medical Center Alkmaar, the Netherlands

Key Words: cystic fibrosis • diagnosis • parents • children • prediagnostic period • neonatal screening

Abbreviations: CF, cystic fibrosis • BHS, Beck Hopelessness Scale • OR, odds ratio • CI, confidence interval

Received for publication Jan 22, 2002; Accepted Aug 8, 2002.




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