Background Recent research has shown that behavioural symptoms in Huntington’s disease (HD) have a significant impact on patients’ quality of life and function. Accurate assessment of behavioural symptoms is important in both HD research and clinical care of HD families. The short version of the Problem Behaviours Assessment for HD (PBA-s) was developed by the EHDN’s Behavioural Working Group for use in longitudinal observational and interventional studies of HD. The PBA-s is a semi structured clinical interview measuring the presence, severity and frequency of 11 key behavioural symptoms. Detailed severity scoring criteria are provided for each item in order to facilitate good levels of inter-rater reliability.
The PBA-s is currently in use in international observational studies such as REGISTRY and Enroll-HD as well as multicentre RCTs. In order to ensure consistency of PBA-s data collected in HD studies, it is necessary for anyone administering the PBA-s to undergo training. The Behavioural working group has developed a standardised training package for the PBA-s which can be delivered in person or online.
Aims This introductory training session aims to provide a taster of the PBA-s and its general principles. It is not intended to be a full training and potential raters will still need to complete a full training session before carrying out the assessment.
Methods The training session will consist of a short explanation of the general principles of PBA-s administration. Video clips of real PBA-s interviews with HD patients will be shown and participants at the training session are invited to consider the scoring criteria and apply them to the video clips. Scores are reviewed via an open discussion before arriving at a consensus.
Outcome After the training session participants should have a basic understanding of the PBA-s and its use. Further training will be required before beginning to administer the assessment.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.