Development of the Fearless, Tearless Transition model of care for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities.
Evelyn Culnane, Hayley Loftus, Daryl Efron and 7 others
PMID 33332592WHAT IT FOUND
Transition for adolescents with dual disabilities is often chaotic.
Carers reported anxiety and unmet needs. A new model uses a dedicated coordinator and shared care between paediatricians and GPs to improve planning, though its effectiveness is not yet proven.
Key findings
01Carers and clinicians identified variability in transition planning, systemic disconnection between health and disability sectors, and a lack of services and expertise as major barriers.
02The Fearless, Tearless Transition model was developed to address these barriers through centralized case management, early engagement of GPs, and shared care between paediatricians and GPs.
03While early results suggest carers feel more prepared, the model's effectiveness has not yet been formally evaluated in a published study.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study is a quality improvement project, not a randomized controlled trial, so it cannot prove the model works. Evaluation of the model's outcomes is yet to be published; current claims of benefit are based on early, unpublished feedback. Only one young adult responded to the survey, so the patient perspective is severely underrepresented. The model was developed within a hospital with an established transition service, which may limit its replicability in settings without such infrastructure.
Declared interests
Funded by the Royal Children's Hospital Foundation. The authors state no other conflicts of interest.
The easy way to misread this
Do not assume this model has been proven effective. The paper describes its development and implementation, but formal evaluation results are unpublished, and the current evidence is based on stakeholder opinions and early anecdotal feedback.