Early vs Late Diagnosis: Psy. Impact on Parents of Children w/ CF

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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

E. Mérelle, MD, PhD*, Jaap Huisman, PhD, 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

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

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.

Key Words: cystic fibrosis • diagnosis • parents • children •

prediagnostic period • neonatal screeningAbbreviations: CF, cystic

fibrosis • BHS, Beck Hopelessness Scale • OR, odds ratio • CI, confidence

intervalReceived for publication Jan 22, 2002; accepted Aug 8, 2002.

Becki

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