The Landscape for Recruitment of Pre-School Aged Children with Neurodevelopmental Conditions in Scotland.

Background: Recruitment of children with neurodevelopmental conditions presents a challenge in research. Many caregivers, educators and clinicians can be protective and have excessive time demands. This can create barriers to recruitment. In Scotland, despite a unified health service ethics system and complementary university ethics board, many local approval processes are additionally required. Different processes with different values and expectations are required, and these are not readily apparent.

Objectives: We sought to determine the most efficient recruitment pathways for children with neurodevelopmental conditions to aid the development of recruitment strategies in future research in Scotland.

Methods: This work is part of a Phase III diagnostic trial to assess the sensitivity of iPad games to detect autism spectrum disorder in preschool aged children (Clinical trials Gov. ID NCT03438994). Groups included: typically developing (TD), diagnosis of autism spectrum disorder (ASD) and diagnosis of another neurodevelopmental condition that is not autism (OND). Each health board, clinician, local authority, nursery, and educational team lead approached was recorded and approval rate calculated. For those approved, the number of information packs distributed was noted by pathway (NHS health board, local authority council, or private nursery) and site. Returned consent forms and final participant participation was recorded. These data were stratified by pathway and local authority within each pathway.

Results: 5 NHS health boards, 10 local authorities and 14 private nurseries were approached for approval; of which, 3, 6 and 13, respectively, gave approval. Percentage return was best in private nurseries (37%), however was limited to TD participants. Results demonstrated that the council pathway yielded the highest number of participants across all groups (171). Stratified by pathway, NHS yielded 17 ASD from 10 sites; local authority yielded 112 TD, 16 OND and 43 ASD from 17 sites and private yielded 159 TD from 13 sites. In all cases the number of consent forms returned matched the number of assessments which took place.

Conclusions: These results indicate that successful recruitment is more likely to occur via local council pathways. Although the return of participants was low in comparison to the number of information packs distributed, this may be due to the high volume of packs distributed in this pathway. The high percentage return from private nurseries is likely due to good relationships between staff and parents. The lowest return was observed in the NHS pathway, this may be due to high time pressures on clinicians, leaving them unable to dedicate time to research or time to the clinical assessment pathway for neurodevelopmental conditions. Until pressure on clinicians is lifted and local health boards develop a unified method for assessment and treatment of children, recruitment in NHS facilities will remain an undesirable option for research studies. While local authority and private nurseries remain the most effective route to recruitment, development of effective strategies is hindered by the lack of transparency and over complication of differing values between local authorities, nurseries, and schools. A consistent, cohesive application process within the NHS and local authority pathways would be of great benefit.