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

[Guest guest]

This was an interesting article. Our daughter was in and out of hospitals

until she was 11 when an intern in the middle of the night suggested testing

for CF. If we had known all those years prior our attitudes would have been

very different.

G

Early vs Late Diagnosis: Psy. Impact on Parents of

Children w/ CF

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

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> 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.

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> Becki

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