None listed
Conditions
Brief summary
The transition of medical care from paediatric care to Primary Care can be a time of vulnerability for young people with developmental and intellectual disability. There is a strong research base detailing the poor health outcomes and the barriers to successful transition for young people with disabilities. Whilst the deficiencies in transition care are well known there is minimal research examining optimal models of care and successful tools for improving outcomes for patients with developmental disability. This project is a single-arm trial aiming to test the effectiveness and acceptability of a local individualised healthcare communication transition document. The population will be children and young people and their families with a physical or intellectual disability aged 14-18 who are ready to enter the transition process. The primary outcome will be transition readiness scores using a pre validated UNC TR(x)ANSITION scale compared to pre-intervention and the modulator or secondary outcomes would be number of GP visits in conjunction with the number of emergency care presentations. Feedback would be collected by questionnaire and analysed quantitatively and qualitatively. This would occur over a six month period.
Interventions
Formal healthcare transition document (written form) created for general practitioners and families.
Information recorded=medical background, medications, allergies, list of all issues with current management and future management requirements. Information for families and GP's providing contact details of resources.
Completed by the pediatrician caring for that patient (in discussion with patient and their family)
Completed at any time during the transition process which takes place from 14
Formal healthcare transition document (written form) created for general practitioners and families. Information recorded=medical background, medications, allergies, list of all issues with current management and future management requirements. Information for families and GP's providing contact details of resources. Completed by the pediatrician caring for that patient (in discussion with patient and their family) Completed at any time during the transition process which takes place from 14-18 years and will act as a document both during this time and also once they have transitioned. It may need to be updated over time until they are finally passed onto the General Practitioner. (who will manage their medical care after pediatrics)
Sponsors
Emma Cluett
Study design
Allocation
Non-randomised trial
Primary purpose
Educational / counselling / training
Eligibility
Sex/Gender
All
Age
14 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
Young people and their families age 14 -18 years who have physical/intellectual/developmental disabiliites and are at or near transition time from paediatrics to general practice.
Exclusion criteria
Isolated Autism Specturm Disorder without Intellectual disability. Isolated ADHD without Intellectual Disability Intepreter needed due to language barrier
Outcome results
None listed