Evaluating Innovations in Transition From Pediatric to Adult Care - The Transition Navigator Trial
Condition: Diabetes; Endocrine System Diseases; Gastro-Intestinal Disorder; Neuro-Degenerative Disease; Epilepsy; Autoimmune Diseases; Renal Disease; Cardiac Disease; Metabolic Disease; Genetic Diseases, Inborn; Respiratory Disease; Hematologic Diseases; Autism Spectrum Disorder; Fetal Alcohol Spectrum Disorders; Traumatic Brain Injury; Stroke
MeSH terms: Intestinal Diseases; Gastrointestinal Diseases; Digestive System Diseases; Respiratory Tract Diseases; Brain Injuries; Brain Injuries, Traumatic; Neurodegenerative Diseases; Fetal Alcohol Spectrum Disorders; Heart Diseases; Hematologic Diseases; Genetic Diseases, Inborn; Metabolic Diseases; Endocrine System Diseases; Autoimmune Diseases; Autism Spectrum Disorder
Study type: Interventional

Summary: 
      The Transition Navigator Trial (TNT) is a pragmatic randomized controlled trial evaluating
      the effectiveness of usual care plus a patient navigator service versus usual care plus
      newsletters and other educational materials, to improve transition outcomes among adolescents
      aged 16-21 who have chronic health conditions requiring transfer to adult specialty care.

      The study will provide urgently needed data to guide health care providers and policy makers
      regarding the provision of coordinated transition care. These results have the potential to:

        1. Change care delivery

        2. Improve health outcomes

        3. Improve the experiences of young adult transition to adult care
    

Detailed description: 
      Transition is the purposeful, planned movement of adolescent and young adults with chronic
      health conditions from child-centered to adult-oriented health systems. Transition includes,
      but is not limited to transfer to adult care. Transfer of care, which occurs during a
      vulnerable developmental period around age 18 introduces gaps in continuity of care that can
      lead to detrimental health outcomes in young adults. Therefore, provision of coordinated and
      developmentally appropriate care during the transition period is necessary to maintain health
      and to sustain investments made in pediatric health care.

      Clinical practice guidelines for transition to adult care recommend the use of patient
      navigators to coordinate the entry of patients into a complex and unfamiliar adult health
      care system. Patient navigators provide individualized supports to facilitate medical
      follow-up and adherence. A limited number of studies have shown that access to a patient
      navigator during transition decreases drop-out from medical care and disease specific adverse
      events. No study to date has evaluated the benefits of a patient navigator to improve patient
      and or health system outcomes, when implemented across multiple chronic disease settings.

      Objectives/Methods

        1. to evaluate the impact of a patient navigator intervention compared to treatment as
           usual for 16 to 21 year olds living with chronic health conditions who are transferring
           to adult care with respect to healthcare utilization and patient reported outcomes

        2. to obtain perceptions of stakeholders regarding the role of patient navigators in
           reducing barriers to adult-oriented ambulatory care

        3. to determine the net health care cost impact attributable to the navigator intervention

      A qualitative study sampling participants randomized into the intervention arm at the
      beginning and end of the trial will also be undertaken to understand the patient experience.
    

Intervention name(s): Patient Navigator; Usual Care
Intervention type(s): Other; Other
Intervention description(s): Social worker/Patient Navigator will be assigned to follow youth in adult care for up to 24 months to assist youth adapt and attach to adult delivered healthcare; Whatever processes are in place in a variety of clinics to support transfer from pediatric to adult care in the pediatric clinics
Allocation: Randomized
Intervention model: Parallel Assignment
Intervention model description: Two groups of participants will be randomized by primary clinical area
Masking: None (Open Label)
Primary purpose: Health Services Research
Keywords: transition, young adults, transfer