Development and validation of PHTS specific neurobehavioural evaluation tools

Introduction

PHTS can affect people in different ways, and some people with PHTS have developmental, learning, or behavioural symptoms or autism spectrum disorder (ASD).

Current tools to measure these key behaviours and thinking skills in PHTS were not developed with PHTS in mind, so it can be both complex and time consuming to track symptoms, compare experiences across families, or tell whether an intervention or drug is helping. Any new measures being developed should also be easy to use so they do not cause undue burden on families and individuals with PHTS. Therefore, having tools that can be completed at home over the internet is preferred over those that require travel to a hospital.

Project goals

To develop and validate tools that can assess the broad range of symptoms associated with developmental delay and autism spectrum disorder experienced by some people with PHTS, which can be used in the family home and do not take a long time to complete.

Project overview

In this project, Prof Thomas Frazier’s team developed and validated web-based tools designed specifically for people with PHTS.

One of the tools is a questionnaire that is completed by someone who knows the person with PHTS very well, such as a parent or guardian. The other is a webcam tool which shows researchers how the person with PHTS is performing various tasks. Both of these measures can be completed at home on a normal computer with a webcam, instead of having to go to a hospital appointment.

First the researchers talked to expert PHTS doctors and families to understand the most important problems in PHTS that should be measured by the tools.

Once the tools had been developed and tested, a larger study including 112 pairs of individuals with PHTS and their caregiver took part in a study to test if the new tool captured relevant PHTS symptoms and to confirm that the tool was suitable to use by families at home.