Healthcare Transition of Adolescents With Chronic Health Conditions

University of Helsinki

Status: Unknown

Conditions: Transition; Diabetes; Kidney Diseases; Congenital Heart Disease; Inflammatory Bowel Diseases; Neurologic Disorder; Rheumatic Diseases; Liver Diseases

Treatments: Behavioral: Transition support service

Study type: Observational

Funder types: Other

Identifiers

NCT04631965

U1011SILTA

Details and patient eligibility

About

At least 12% of children have a chronic disease that requires regular medical follow-up after patients reach legal maturity. This international study aims to provide prospective evidence for improving health and wellbeing outcomes in this population.

The primary hypothesis is that transition readiness will be more strongly associated with adherence to follow-up, fewer emergency visits and continued education than disease severity or chronological age.

The secondary hypothesis is that positive experiences of care will be associated with lower levels of anxiety. Positive care experiences and low anxiety will predict better health-related quality of life during the transition period.

A cohort of 504 young patients will be followed for three years. Patients have been recruited from pediatric hospitals 0-12 months prior to the transfer of care and follow-up will be completed after the patients have been followed for two years in adult healthcare.

Enrollment: 503 patients

Sex: All

Ages: 15 to 20 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Adolescents with a chronic medical condition (duration at least 6 months prior to recruitment)
• Attend care and/or follow-up at either the New Children's Hospital in Helsinki, Finland or the Royal Children's Hospital in Melbourne, Australia in one or more of the following disciplines: endocrinology, gastroenterology, cardiology, rheumatology, neurology, pediatric surgery, nephrology and solid organ transplantation.
• Care to be transferred to adult services within 0-12 months following recruitment

Exclusion criteria

• Lack of fluency in study languages (Finnish, Swedish and English)
• Cognitive limitations that inhibit responding to questionnaires

Trial design

503 participants in 2 patient groups

Cohort in Finland

Description:

253 young patients who attend clinics in Finland with no hospital-wide transition support service available

Cohort in Australia

Description:

250 young patients who attend clinics in Victoria, Australia and who have received support from a hospital-wide transition support service

Treatment:

Behavioral: Transition support service