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An adapted scale to evaluate insight in Prader-Willi Syndrome

Jesus Cobo1, Ramón Coronas2, Esther Pousa3

  • 1Mental Health Department, Corporació Sanitària Parc Taulí - Universitat Autònoma de Barcelona - Institut d'Investigació i Innovació Parc Taulí (I3PT), CIBERSAM, Sabadell, Spain; Department of Psychiatry and Forensic Medicine, Universitat Autònoma de Barcelona, Bellaterra, Spain; Insight Barcelona Research Group, Societat Catalana de Psiquiatria i Salut Mental, Barcelona, Spain.

Medicina Clinica
|October 26, 2021
PubMed

Insights

A new scale, the Adapted Prader-Willi Syndrome Scale of Unawareness of Mental Disorder (APW-SUD), effectively measures insight in Prader-Willi Syndrome patients. This tool aids in understanding awareness of the disorder and its symptoms.

Area of Science:

  • Neuroscience
  • Psychiatry
  • Genetics

Background:

  • Prader-Willi Syndrome (PWS) is a complex neurodevelopmental disorder associated with significant psychopathological and behavioral challenges.
  • Assessing insight, or self-awareness, is crucial for managing PWS and its associated symptoms, yet specific tools for this population were lacking.

Observation:

  • A study evaluated 36 PWS patients using an adapted Scale of Unawareness of Mental Disorder (SUMD).
  • The adapted scale assessed general insight dimensions (awareness of PWS, medication effects, social consequences) and specific symptom awareness (obesity, appetite, food intake).

Findings:

  • The final six-item scale, the APW-SUD, demonstrated adequate internal consistency (Cronbach's alpha 0.857 for caregivers, 0.798 for clinicians).
  • External validation using the Analytical-Visual Insight Scale was adequate, supporting its reliability.
  • A high inter-rater variability was noted, indicating a need for standardized administration.

Implications:

  • The APW-SUD is a psychometrically sound and easily administered tool for assessing insight in individuals with PWS.
  • Improved insight assessment can lead to more tailored interventions and better management of PWS symptoms and associated challenges.
  • This scale can facilitate clinical research and improve patient care by providing a standardized measure of self-awareness in PWS.
Abstract

Keywords:
AwarenessCaregiversConcienciaCuidadoresGeneticalGenéticaInsightPrader-Willi SyndromeSíndrome de Prader-Willi

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