Follow-up care by a genetic counsellor for relatives at risk for cardiomyopathies is cost-saving and well-appreciated: A randomised comparison

Karin Nieuwhof*, Erwin Birnie, Maarten P. van den Berg, Rudolf A. de Boer, Paul L. van Haelst, J. Peter van Tintelen, Irene M. van Langen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

3 Citations (Scopus)

Abstract

Increasing numbers of patient relatives at risk of developing dilated or hypertrophic cardiomyopathy (DCM/HCM) are being identified and followed up by cardiologists according to the ACC/ESC guidelines. However, given limited healthcare resources, good-quality low-cost alternative approaches are needed. Therefore, we have compared conventional follow-up by a cardiologist with that provided at a cardiogenetic clinic (CGC) led by a genetic counsellor. Phenotype-negative first-degree relatives at risk for DCM/HCM were randomly assigned to see either a cardiologist or to attend a CGC. Uptake and resource use were recorded. For 189 participants, we evaluated quality of care experienced, patient satisfaction and perceived personal control (PPC) using validated questionnaires and estimated the average cost difference of these two modes of care. Maximum patient satisfaction scores were achieved more frequently at the CGC (86% vs 45%, P

Original languageEnglish
Pages (from-to)169-175
Number of pages7
JournalEuropean Journal of Human Genetics
Volume25
DOIs
Publication statusPublished - 2017

Keywords

  • HEART-FAILURE CLINICS
  • PERSONAL CONTROL PPC
  • HYPERTROPHIC CARDIOMYOPATHY
  • DILATED CARDIOMYOPATHY
  • PRACTICE GUIDELINES
  • TASK-FORCE
  • QUESTIONNAIRE

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