Experience of transfer from child to adult mental health services of young people with autism spectrum disorder

Abstract

Background Transition from child-centred to adult mental health services has been reported as challenging for young people. It can be especially difficult for young people with autism spectrum disorder (ASD) as they manage the challenges of adolescence and navigate leaving child and adolescent mental health services (CAMHS). Aims This study examines the predictors of transfer to adult mental health services, and using a qualitative analysis, explores the young people’s experiences of transition. Method A UK sample of 118 young people aged 14–21 years, with ASD and additional mental health problems, recruited from four National Health Service trusts were followed up every 12 months over 3 years, as they were discharged from CAMHS. Measures of mental health and rich additional contextual information (clinical, family, social, educational) were used to capture their experiences. Regression and framework analyses were used. Results Regression analysis showed having an attention-deficit hyperactivity disorder diagnosis and taking medication were predictors of transfer from child to adult mental health services. Several features of young people's transition experience were found to be associated with positive outcomes and ongoing problems, including family factors, education transitions and levels of engagement with services. Conclusions The findings show the importance of monitoring and identifying those young people that might be particularly at risk of negative outcomes and crisis presentations. Although some young people were able to successfully manage their mental health following discharge from CAMHS, others reported levels of unmet need and negative experiences of transition.

Cohort profile: demographic and clinical characteristics of the MILESTONE longitudinal cohort of young people approaching the upper age limit of their child mental health care service in Europe

“…3-5 8 10 11 Only few prospective studies have been conducted, mostly in small samples, within one CAMHS or within subsamples such as young people with autism spectrum disorders (ASD). 6 7 12 Only 1 study, 12 investigating 118 young people with ASD, included self-reported and parent-reported information. To date, no studies have been conducted that compare longitudinal mental health outcomes of young people who transition to AMHS with those who do not.…”

Annual Research Review: A systematic review of mental health services for emerging adults – moulding a precipice into a smooth passage

“…Data extraction – Neurodevelopmental disorders). Three studies included young people with ASD (Laxman, Taylor, DaWalt, Greenberg, & Mailick, 2019; Merrick et al., 2020; Tunesi, Bosio, & Russo, 2019), four included young people with any neurodevelopmental condition (Asl, 2014; Maslow, 2016; Patwardhan, Singh, & Kanster, 2019; Singh et al., 2021), one focused on learning disabilities (Sharif, 2021), one on hyperkinetic disorder (Blasco‐Fontecilla et al., 2012) and the remainder focussed on ADHD (Ayyash et al., 2018; Eke et al., 2019; Eke et al., 2018; Heron et al., 2020; Janssens et al., 2020; Magon, Latheesh, & Muller, 2015; McCarthy et al., 2009; McNicholas & Singh, 2015; Moosa & Sandhu, 2015; Ogundele, 2013; Ogundele & Omenaka, 2012; Price, Newlove‐Delgado, et al., 2019; Reale et al., 2018; Reale, Frassica, Gollner, & Bonati, 2015; Tatlow‐Golden et al., 2018). However, most studies included young people with comorbidity, including those with comorbid ADHD/ASD.…”

“…This variation in the proportion referred may relate to different health systems, changes over time and inclusion criteria. Predictors of referral and acceptance into adult services identified included female gender, comorbidity and pharmacological or combined treatment of ADHD (Merrick et al., 2020).…”

“…We found a single UK study following up young people seen in CAMHS for ASD and an additional mental health problem (Merrick et al., 2020). Of 118 young people, 25 transferred to AMHS (28%), 48 to primary care and 20 remained with CAMHS.…”

Transition care for adolescents and young adults with attention‐deficit hyperactivity disorder (ADHD): A descriptive summary of qualitative evidence

“…The transfer from child to adult care is called transition, which includes a series of steps to follow and whose main objective is to ensure the continuity of care (Schor, 2015). Over the last two decades, the importance of transition care has been increasingly recognized within both paediatric and adult sectors, also for other chronic disorders (Davignon et al, 2018; Elias & White, 2018; Levy et al, 2020; Merrick et al, 2020; Paton & Hiscock, 2019; Sezgin et al, 2020). In Europe, many projects (Janssens et al, 2020; Lepiece et al, 2020; Paul et al, 2013; Singh et al, 2008, 2010, 2017), programmes and register networks (Bonati et al, 2018; Jonsson et al, 2021; Poulton, 2017) concerning transition were created; also in Italy, a scoping review was conducted (Reale & Bonati, 2015); all these actions have highlighted the needing of a standard transition protocol with shared guidelines, formal policies and more investments in healthcare service delivery.…”