Congenital Heart Disease, Diabetes, Inflammatory Bowel Diseases, Kidney Diseases, Liver Diseases, Neurologic Disorder, Rheumatic Diseases, Transition
Conditions
Keywords
adolescent
Brief summary
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.
Interventions
BEHAVIORALTransition support service
The hospital-wide transition support service provides systematic care coordination for young patients prior to the transfer of care
Sponsors
Pediatric Research Center
Foundation for Medical Research
Foundation for Paediatric Research, Finland
The Paulo Foundation
Royal Children's Hospital
Murdoch Childrens Research Institute
University of Melbourne
University of Helsinki
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
15 Years to 20 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Emergency admissions | Two years post-transfer | Data linkage will be used to gather information on emergency admissions after the transfer of care. Admissions related to the respective chronic health conditions will serve as one indicator of treatment adherence. |
| Change in health status | Baseline to two years post-transfer | Patients will report on their symptom severity during the past week using the Visual Analog Scale (VAS). The VAS is a line, 10cm long, with worst imaginable health at one end, and best imaginable health at the other end. Patients make a mark indicating their health between these. |
| Change in anxiety related to transition of care | Baseline to two years post-transfer | The State-Trait Anxiety Inventory (STAI) is a validated, 6-item self-report tool to measure anxiety. Items are rated on a 4-point Likert scale. Possible scores range between 20-80, with higher scores indicating higher anxiety. |
| Missed appointments | Two years post-transfer | Data linkage will be used to gather the number of missed appointments (uncancelled, not rescheduled) in adult health care. These will serve as one indicator of treatment adherence. |
| Change in 16D health-related quality of life | Baseline to two years post-transfer | 16D is a generic, validated self-report of health related quality of life (HRQoL). It has 16 dimensions, all rated on a 5-point Likert scale. The total 16D score varies from 0 to 1, with 1 being the best imaginable state of HRQoL and with a minimum important change of 0.015. |
| Change in PedsQL health-related quality of life | Baseline to two years post-transfer | The Pediatric Quality of Life Inventory (PedsQL) is another validated generic tool to measure HRQoL. It includes 25 questions divided into 4 categories (physical, emotional, social and school). Scores range from 0 to 100, with 100 the best imaginable HRQoL. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Change in educational status | Baseline to two years post-transfer | In a questionnaire, patients will annually report on their education status. (Specific question and response options: What is your current education status? Tick one: High school, University student, Homemaker or caregiver, Other (please specify), I'm not enrolled in any studies. These figures will be compared with respective national data. |
| Change in employment status | Baseline to two years post-transfer | In a questionnaire, patients will annually report on their employment status. (Specific question and response options: What is your current employment status? Tick one: Working part-time (\<30 hours/week); Working full-time (incl. working in shifts); Unemployed, looking for work; Unemployed, not looking for work; Homemaker or caregiver; Other (please specify). These figures will be compared with respective national data. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Adolescent-friendliness of healthcare services in pediatric and adult hospitals | Baseline to two years post-transfer | Patients will evaluate the healthcare services they utilize using the Adolescent-friendly hospital survey that was developed in Melbourne in 2011. The survey includes eight items, with four response options each (I fully agree, I somewhat agree, I disagree and I don't know). |
Countries
Australia, Finland
Outcome results
None listed