Psychological test usage in duchenne muscular dystrophy: An EU multi-centre study

Pien Weerkamp, Daniela Pia Rosaria Chieffo, Philippe Collin, Federica Moriconi, Andriani Papageorgiou, Isabella Vainieri, Ruben Miranda, Catherine Hankinson, Asmus Vogel, Sarah Poncet, Catherine Moss, Francesco Muntoni, Eugenio Maria Mercuri, Jos Hendriksen

Research output: Contribution to journalArticle

Abstract

Aim: During the last two decades brain related comorbidities of Duchenne have received growing scientific and clinical interest and therefore systematic assessment of cognition, behaviour and learning is important. This study aims to describe the instruments currently being used in five neuromuscular clinics in Europe as well as the diagnoses being made in these clinics.Method: A Delphi based procedure was developed by which a questionnaire was sent to the psychologist in five of the seven participating clinics of the Brain Involvement In Dystrophinopathy (BIND) study. Instruments and diagnoses being used were inventoried for three domains of functioning (cognition, behaviour and academics) and three age groups (3-5 years, 6-18 years and adulthood 18+ years).Results: Data show wide diversity of tests being used in the five centres at different age groups and different domains. For the intelligence testing there is consensus in using the Wechsler scales, but all other domains such as memory, attention, behavioural problems and reading are tested in very different ways by different instruments in the participating centres.Conclusion: The heterogeneity of tests and diagnoses being used in current clinical practice underlines the importance for developing a Standard Operating Procedure (SOP) to improve both clinical practice and scientific research over different countries and improve comparative work.
Original languageEnglish
Pages (from-to)42-47
Number of pages6
JournalEuropean Journal of Paediatric Neurology
Volume46
DOIs
Publication statusPublished - 2023

Keywords

  • Duchenne muscular dystrophy
  • Multicentre
  • Neuropsychology
  • Test-usage

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