Changes in empowerment and anxiety of patients and parents during genetic counselling for epilepsy

Danique R M Vlaskamp, Patrick Rump, Petra M C Callenbach, Eva H Brilstra, Mary E Velthuizen, Oebele F Brouwer, Adelita V Ranchor, Conny M A van Ravenswaaij-Arts*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
29 Downloads (Pure)

Abstract

Genetic testing and counselling are increasingly important in epilepsy care, aiming at finding a diagnosis, understanding aetiology and improving treatment and outcome. The psychological impact of genetic counselling from patients' or parents & rsquo; perspectives is, however, unknown. We studied the counseleereported outcome of genetic counselling before and after genetic testing for epilepsy by evaluating empowerment - a key outcome goal of counselling reflecting cognitive, decisional and behavioural control, emotional regulation and hope - and anxiety. We asked patients or their parents (for those

(c) 2021 The Author(s). Published by Elsevier Ltd on behalf of European Paediatric Neurology Society. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

Original languageEnglish
Pages (from-to)128-135
Number of pages8
JournalEuropean Journal of Paediatric Neurology
Volume32
Early online date2-Apr-2021
DOIs
Publication statusPublished - May-2021

Keywords

  • Genetic counselling
  • Empowerment
  • Epilepsy
  • Genetic testing
  • Outcome
  • CLINICAL GENETICS
  • IMPACT
  • INDIVIDUALS
  • INVENTORY
  • DIAGNOSIS
  • OUTCOMES
  • NORMS
  • SCALE
  • CARE

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