Feasibility of the ICF CoreSets for Autism Strengths and Needs Assessment in NHS diagnostic services in England: protocol for a randomised pilot trial.
Day Marianne, Scargill Kelly, Poole Daniel, Kellar Ian, Young Tracey Anne, Bölte Sven, Clarke Sally, Lodge Keri-Michèle, Woods Andrea, Freeth M
What this study means for families
Researchers are testing a new way to assess the strengths and support needs of adults who have just been diagnosed with autism. Currently, many people receive an autism diagnosis but don't get enough information about what support they might need. This study will test whether a detailed assessment tool can help identify what support newly diagnosed autistic adults need. 72 people will take part across three NHS services in England, with some receiving the new assessment and others receiving usual care.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Research summary
This is a protocol for a randomised pilot trial evaluating the feasibility of using ICF CoreSets for Autism Strengths and Needs Assessment in NHS adult diagnostic services in England. The study will recruit 72 newly diagnosed autistic adults across three sites, randomising them to receive either the strengths and needs assessment plus standard care, or standard care only. The assessment is based on WHO's International Classification of Functioning, Disability and Health CoreSet for Autism and aims to provide better information for planning post-diagnostic support. Primary outcomes focus on feasibility and acceptability, with secondary measures including mental health and quality of life assessments at baseline and 3-month follow-up.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Key findings
- 1
This is a study protocol - no results are available yet
Confidence: Not applicableRelevance: The study addresses a gap in post-diagnostic support planning for autistic adults
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Clinical implications
If successful, this assessment tool could standardise and improve post-diagnostic support planning for autistic adults in NHS services. The study addresses current inequities in care planning that may arise from lack of validated tools for assessing strengths and needs following autism diagnosis.
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Limitations
This is a protocol paper with no results reported. The study is a pilot trial with a relatively small sample size (72 participants) and short follow-up period (3 months).
Summary by AutismInsights from published abstract. This is not a substitute for reading the original paper.
Original abstract
There are approximately 700 000 autistic people in the UK, and autism is increasingly being diagnosed in adulthood. Diagnosis on its own does not provide adequate information to plan post-diagnostic support for autistic people, and clinicians often plan support without the use of validated standardised tools which may exacerbate inequities in care. This study will evaluate a novel strengths and needs assessment, based on the WHO's International Classification of Functioning, Disability and Health CoreSet for Autism, for use in adult diagnostic services immediately on receipt of an autism diagnosis. Potential issues, including the length of the assessment, timing of delivery and selection bias, will be explored as part of the trial process evaluation.
A two-arm, multisite, randomised pilot trial design will be used to evaluate the ICF CoreSets for Autism Strengths and Needs Assessment in three diagnostic services in England. A total of 72 newly diagnosed autistic adults will be recruited across the three sites over a 6-month period and randomised into an assessment group (strengths and needs assessment plus standard care) and a treatment as usual group (standard care only). The assessment group will receive a summary report of their strengths and needs on completion of the assessment. Both groups will complete measures of mental health and quality of life at baseline and 3 months follow-up (Patient Health Questionnaire-9, Generalised Anxiety Disorder questionnaire-7, Recovering Quality of Life questionnaire-10, EuroQoL-5D).
Acceptability and feasibility will be measured for the strengths and needs assessment and for trial procedures using standardised measures, progression criteria and qualitative data from clinician focus groups and interviews with a subsample of autistic participants. The study design and procedures are being co-produced with an autistic advisor/patient and public involvement lead and with a steering group of autistic adults. This study was reviewed by the East Midlands-Nottingham 2 Research Ethics Committee and was given Health Research Authority approval on 18 March 2025 (REC reference:25/EM/0041). The results will be disseminated via reports to the funder (NIHR), a peer-reviewed journal paper and academic conferences.
We will email a summary report of findings to study participants and will invite participants to an information dissemination event at the end of the study. Links to reports and a lay summary will be provided on the research group's website: https://sharl.sites.sheffield.ac.uk/home TRIAL REGISTRATION NUMBER: ISRCTN10283350.
Evidence Grade
emerging
Grade assigned by AutismInsights based on study type and published abstract.
Study Details
- Type
- Clinical Trial
- Journal
- BMJ open
- Year
- 2026
- PMID
- 41775479
- DOI
- 10.1136/bmjopen-2025-103303
MeSH Terms