An observational study of individual child journeys through autism diagnostic pathways, and associated costs, in the UK National Health Service.

Background: Demand for diagnostic assessment in children with possible autism has recently increased significantly. Services are under pressure to deliver timely and high-quality diagnosis, following National Institute and Care Excellence multidisciplinary assessment guidelines. This UK National Health Service study aimed to answer: how many hours of health professional time are required to deliver autism diagnostic assessment, and how much does this cost?. Method: Case notes of 20 children (1-16 yrs.) from 27 NHS trusts, assessed through an autism diagnostic pathway in the previous year, were examined retrospectively. Data included: hours of professional time, diagnostic outcome. Assessment costs calculated using standardised NHS tariffs. Results: 488 children (aged 21-195 months, mean 82.9 months, SD 39.36) from 22 Child Development Services (CDS), four Child and Adolescent Mental Health Services (CAMHS) and one tertiary centre; 87% were either under 5 (36%) or 5 to 11 years (51%). Children seen by CDS were younger than CAMHS (mean (SD) 6.10 (2.72) vs. 10.39 (2.97) years, p < 0.001). Mean days to diagnosis were 375 (SD 235), with large variation (range 41-1553 days). Mean hours of professional time per child was 11.50 (SD 7.03) and varied substantially between services and individuals. Mean cost of assessment was £846.00 (SD 536.31). 339 (70.0%) children received autism diagnosis with or without comorbidity; 54 (11%) received no neurodevelopmental diagnosis; 91 (19%) received alternative neurodevelopmental diagnoses. Children with one or more coexisting conditions took longer to diagnose, and assessment was more costly, on average 117 days longer, costing £180 more than a child with no neurodevelopmental diagnosis. Age did not predict days to diagnosis or assessment costs. Conclusion: Typical assessment took 11 h of professional time and over 12-months to complete, costing GB£850 per child. Variation between centres and children reflect differences in practice and complexity of diagnostic presentation. These results give information to those delivering/planning autism assessments using multi-disciplinary team approach, in publicly funded health systems. Planning of future diagnostic services needs to consider growing demand, the need for streamlining, enabling context appropriate services, and child/family complexity.

Cost of assessing a child for possible autism spectrum disorder? An observational study of current practice in child development centres in the UK.

OBJECTIVE: UK guidelines recommend that diagnosis of autism in children requires assessment by a multidisciplinary team. With growing numbers of referrals for assessment, diagnostic services have been under increasing pressure to meet the level of need. This study aimed to explore the number of hours of professional time required to complete such an assessment based on current practice in secondary care child development centres across the UK, and from this we calculate the cost of assessment. DESIGN: An online questionnaire, using SurveyMonkey.com, was sent to 20 child development centres asking them to retrospectively record team members involved at each stage of assessment and time taken, including report writing and administration for a typical assessment. Costs were estimated based on the hourly rate for each team member, including salary, on-costs and trust overheads. RESULTS: 12 questionnaires (60%) were returned. 10 centres adopted a two-stage approach to assessment with an initial 'screening' clinic determining whether the child needed to proceed to full multidisciplinary assessment. Median professional time involved was 13 hours (IQR 9.6-15.5 hours). This resulted in a median cost of £809 ($1213, based on conversion rate £1 equal to US$1.5 (November 2015)), (IQR £684-£925) ($1026-$1388)). IMPLICATIONS: This study confirms that multidisciplinary diagnostic assessment of a child with possible autism requires significant professional time, with staff costs of approximately £800 ($1200) per child. This does not include costs of intervention, parent psychological education, investigation and assessment and management of comorbidities. If growing waiting times for diagnostic assessment are to be avoided, funding for diagnostic services needs to reflect the human resources required and the resulting costs of that assessment.