Developing the Clinical Anxiety Screen for people with Severe to Profound Intellectual Disabilities (CIASP-ID)

Study ID: 42285
Short Title: ClASP-ID
Organisation: Isle of Wight NHS Trust
Location: St Mary's Hospital
Condition: Learning disorders
Main Specialty: Mental Health
Expected End Date: 31/10/2023
Postcode: PO30 5TG
Contact Name: R&D department
Contact Email:
Active: Yes

Inclusion criteria, exclusion criteria and study summary

Given that we are conducting such a large scale survey stud, we have very few inclusion/exclusion criteria. Instead, we are recruiting parents/carers of children (aged 4years +), young people and adults with moderate to profound intellectual disability (with and without autism).

There are no other exclusion criteria but participants will need to have sufficient English to be able to read and interpret the questionnaires.

Many minimally verbal children and young people and adults with intellectual disabilities (ID) cannot easily report on internal feelings and experiences; therefore, clinicians need to focus on changes in a person’s behaviour, when making a diagnosis of an anxiety disorder. However, existing assessment tools of anxiety often include questions about behaviours that could also indicate pain. These challenges make diagnosis of anxiety in individuals with ID very complicated. Ineffective identification of mental health difficulties may prevent children and young people with ID from accessing appropriate care-pathways and interventions. This study focuses on designing a practical and effective assessment tool for anxiety in children and young people and adults with ID. The tool will be piloted to evaluate its potential impact in clinical services. The methodology applied in the development of the tool will include a) semi-structured interviews to identify potential behavioural indicators of anxiety b) a large-scale questionnaire study to establish the tool’s structure, reliability and validity c) observations of people with intellectual disability to determine if behaviours shown by children and young people agree with scores on the tool, d) comparing the young person's score on the tool with the assessment made by an independent clinician. It is hoped that this tool will eventually be used to streamline care pathways, improving the efficiency of services for children and young people with intellectual disabilities.

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