The feasibility of a strategy for the remote recruitment, consenting and assessment of recent referrals: a protocol for phase 1 of the On-Line Parent Training for the Initial Management of ADHD referrals (OPTIMA)

Katarzyna Kostyrka‐Allchorne ,James Shearer ,David Daley ,Cristine Glazebrook ,Johnny Downs ,Zina Ibrahim ,Ellen Hedstrom ,Jana Kreppner ,Charlotte L Hall ,Anna Morris ,Hanna Kovshoff ,Kimberley Goldsmith ,Madeleine J Groom ,Blandine French ,Walter Muruet Gutierrez ,Nancy Lean ,Sarah Byford ,Claire Ballard ,Samuele Cortese ,Lukasz Zalewski ,Christine Jarvis ,Emily Simonoff ,Kapil Sayal ,Margaret Thompson ,Edmund Sonuga‐Barke

doi:10.1186/s40814-021-00959-0

Abstract

BackgroundIn the UK, children with high levels of hyperactivity, impulsivity and inattention referred to clinical services with possible attention-deficit/hyperactivity disorder (ADHD) often wait a long time for specialist diagnostic assessment. Parent training (PT) has the potential to support parents during this difficult period, especially regarding the management of challenging and disruptive behaviours that often accompany ADHD. However, traditional face-to-face PT is costly and difficult to organise in a timely way. We have created a low-cost, easily accessible PT programme delivered via a phone app, Structured E-Parenting Support (STEPS), to address this problem. The overall OPTIMA programme will evaluate the efficacy and cost-effectiveness of STEPS as a way of helping parents manage their children behaviour while on the waitlist. To ensure the timely and efficient evaluation of STEPS in OPTIMA, we have worked with children’s health services to implement a remote strategy for recruitment, screening and assessment of recently referred families. Part of this strategy is incorporated into routine clinical practice and part is OPTIMA specific. Here, we present the protocol for Phase 1 of OPTIMA—a study of the feasibility of this remote strategy, as a basis for a large-scale STEPS randomised controlled trial (RCT).MethodsThis is a single arm observational feasibility study. Participants will be parents of up to 100 children aged 5-11 years with high levels of hyperactivity/impulsivity, inattention and challenging behaviour who are waiting for assessment in one of five UK child and adolescent mental health or behavioural services. Recruitment, consenting and data collection will occur remotely. The primary outcome will be the rate at which the families, who meet inclusion criteria, agree in principle to take part in a full STEPS RCT. Secondary outcomes include acceptability of remote consenting and online data collection procedures; the feasibility of collecting teacher data remotely within the required timeframe, and technical difficulties with completing online questionnaires. All parents in the study will receive access to STEPS.DiscussionEstablishing the feasibility of our remote recruitment, consenting and assessment strategy is a pre-requisite for the full trial of OPTIMA. It can also provide a model for future trials conducted remotely.

Highlights

In the UK, children with high levels of hyperactivity, impulsivity and inattention referred to clinical services with possible attention-deficit/hyperactivity disorder (ADHD) often wait a long time for specialist diagnostic assessment
The long waiting lists to receive assessment and treatment from children’s mental health and paediatric or early behavioural help services mean that parents can be left without support and guidance at the time when it is most needed
The planned randomised controlled trial (RCT) will seek evidence whether the Structured E-Parenting Support (STEPS) app is a clinically and cost-effective intervention for parents of hyperactivity/impulsivity and inattention children with challenging behaviour during the time they remain on the waiting list for assessment

Summary

Introduction

In the UK, children with high levels of hyperactivity, impulsivity and inattention referred to clinical services with possible attention-deficit/hyperactivity disorder (ADHD) often wait a long time for specialist diagnostic assessment. Up to 90% of children with an ADHD diagnosis display a broader pattern of behaviour problems (e.g., oppositional, disruptive, defiant and challenging behaviours) and often meet the criteria for oppositional defiant disorder (ODD) [7] This exacerbates the levels of impairment experienced by children with ADHD [8] and presents a major challenge to parents, increasing levels of parenting stress [9] and mental health problems [10]. These challenging behaviours contribute to coercive child-parent relationships that can deteriorate over time [11]. For many parents, finding a way to manage their child’s disruptive and defiant behaviour is likely to be the most urgent treatment priority at the time of their referral to child and adolescent mental health services (CAMHS)

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