The Clinical Anxiety Screen for Intellectual Disabilities
Research type
Research Study
Full title
Developing the Clinical Anxiety Screen for people with Severe to Profound Intellectual Disabilities (ClASP-ID)
IRAS ID
240250
Contact name
Jane Waite
Contact email
Sponsor organisation
Aston University
Clinicaltrials.gov Identifier
10/H1210/1, REC Reference Number:
Duration of Study in the UK
6 years, 11 months, 30 days
Research summary
Research Summary
Many minimally verbal children and young people 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 children and young people with ID very complicated. Ineffective identification of mental health difficulties blocks children and young people with ID from accessing appropriate care-pathways and interventions.\n\nThis study focuses on designing a practical and effective assessment tool for anxiety in children and young people 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.\n\nIt 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.
Summary of Results
Many children, young people and adults with severe to profound intellectual disabilities (ID) experience high levels of anxiety. However, most existing anxiety questionnaires rely on self-report and cannot be used with people who speak few or no words. This study aimed to develop a new caregiver-completed questionnaire to help identify anxiety in this population and to distinguish it from other causes of distress such as low mood or pain. The new tool developed through this project is called the Clinical Anxiety Screen for People with Severe to Profound Intellectual Disabilities (ClASP-ID).
Stage 1 – Understanding how anxiety presents We first carried out interviews with parents, carers, and clinicians to understand how anxiety typically shows itself in people with severe to profound ID. Families described signs such as increased tension, restlessness, vocalisations, avoidance, and behaviours that challenge. Clinicians highlighted the importance of knowing an individual’s usual behaviour and considering other causes of distress. We combined information from these interviews with a review of existing questionnaires to create an initial list of possible items (questions) for the new tool.
Stage 2 – Developing and testing the questionnaire Next, 311 parents and carers completed the draft ClASP-ID alongside other standard questionnaires. This allowed us to examine how the items grouped together and whether the tool was measuring what we intended.
The analysis showed four distinct areas:
1. Anxiety
2. Pain
3. Low mood
4. Consolability (how easily a person can be comforted when distressed)
This was important because it showed that the questionnaire could help differentiate anxiety from other types of distress.
The questionnaire showed good reliability, meaning that scores were stable when repeated over time and similar when completed by two caregivers who knew the person well.Stage 3 – Validity and follow-up over time Further analysis showed that each part of the ClASP-ID had good internal consistency and related well to other established measures of anxiety, low mood, and pain. Because of delays caused by COVID-19, we used the large Stage 2 dataset to assess validity rather than running an additional separate study.
Stage 4 – Due to the pandemic and service level disruption, we found it difficult to recruit to our planned clinical validity study and this stage of the project was deferred. We have since received funding to complete a non-clinical validation study (covered by another REC approval) and those results will be reported separately.
Stage 5 - We followed up a group of families over three to four years and found that anxiety levels were generally stable over time for most individuals. This provided initial evidence that the ClASP-ID can capture a meaningful and consistent pattern of anxiety over the long term.
Overall findings
Across the project, we successfully developed a new measure that:
• Can be used with people who speak few or no words.
• Helps distinguish anxiety from low mood and pain.
• Works across a wide age range (4–83 years).
• Shows strong reliability and validity.
• Captures stable patterns of anxiety over several years.
This tool will support earlier identification of anxiety and help clinicians make more informed decisions about assessment and support. It also provides a foundation for future research and service improvement in this under-served population.REC name
Wales REC 3
REC reference
18/WA/0139
Date of REC Opinion
10 May 2018
REC opinion
Further Information Favourable Opinion