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| Name | Class |
|---|---|
| Pediatric Research Center | UNKNOWN |
| Foundation for Medical Research | OTHER |
| Foundation for Paediatric Research, Finland | OTHER |
| The Paulo Foundation |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Cohort in Finland | 253 young patients who attend clinics in Finland with no hospital-wide transition support service available | ||
| Cohort in Australia | 250 young patients who attend clinics in Victoria, Australia and who have received support from a hospital-wide transition support service |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Transition support service | Behavioral | The hospital-wide transition support service provides systematic care coordination for young patients prior to the transfer of care |
|
| Measure | Description | Time Frame |
|---|---|---|
| Change in 16D health-related quality of life | 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. | Baseline to two years post-transfer |
| Change in PedsQL health-related quality of life | 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. | Baseline to two years post-transfer |
| Change in health status | 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. | Baseline to two years post-transfer |
| Change in anxiety related to transition of care | 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. | Baseline to two years post-transfer |
| Missed appointments | 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. | Two years post-transfer |
| Measure | Description | Time Frame |
|---|---|---|
| Change in educational status | 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. | Baseline to two years post-transfer |
| Measure | Description | Time Frame |
|---|---|---|
| Adolescent-friendliness of healthcare services in pediatric and adult hospitals | 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). | Baseline to two years post-transfer |
Inclusion Criteria:
Exclusion Criteria:
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Researchers approached all eligible patients until 250 patients at both study sites were recruited. According to power calculations, this will be sufficient to have a 90% chance of detecting, as significant at the 5% level, a 5% change in quality of life, even if groups differ in size.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Royal Children's Hospital | Melbourne | Victoria | 3052 | Australia | ||
| Pediatric Research Center |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 41811518 | Derived | Kallio M, Alanen A, Kolho KL, Relas H, Kosola S. Disease control, psychiatric comorbidity, health-related quality of life, and experiences of care during transition to adult healthcare: a single-center prospective study. Eur J Pediatr. 2026 Mar 11;185(4):174. doi: 10.1007/s00431-026-06791-z. | |
| 39566994 | Derived |
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Only collated data may be shared according to EU and Commonwealth data protection requirements.
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| ID | Term |
|---|---|
| D003920 | Diabetes Mellitus |
| D007674 | Kidney Diseases |
| D008107 | Liver Diseases |
| D015212 | Inflammatory Bowel Diseases |
| D012216 | Rheumatic Diseases |
| D006330 | Heart Defects, Congenital |
| D009422 | Nervous System Diseases |
| ID | Term |
|---|---|
| D044882 | Glucose Metabolism Disorders |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D004700 | Endocrine System Diseases |
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| OTHER |
| Royal Children's Hospital | OTHER |
| Murdoch Childrens Research Institute | OTHER |
| University of Melbourne | OTHER |
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| Emergency admissions |
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. |
| Two years post-transfer |
| Change in employment status | 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. | Baseline to two years post-transfer |
| Helsinki |
| Uusimaa |
| 00029 |
| Finland |
| Alanen A, Kallio M, Culnane E, Koivisto M, Pasanen M, Salantera S, Sawyer S, Kosola S. Anxiety and care experiences in adolescents with chronic health conditions: an international, longitudinal study across the transfer of care. BMJ Paediatr Open. 2024 Nov 19;8(1):e002836. doi: 10.1136/bmjpo-2024-002836. |
| 38768988 | Derived | Kallio MM, Tornivuori A, Kolho KL, Culnane E, Loftus H, Sawyer SM, Kosola S. Changes in health-related quality of life during transition to adult healthcare: an international prospective cohort study. Arch Dis Child. 2024 Jul 18;109(8):659-665. doi: 10.1136/archdischild-2024-327017. |
| 38459510 | Derived | Kallio M, Tornivuori A, Miettinen PJ, Kolho KL, Relas H, Culnane E, Loftus H, Sawyer SM, Kosola S. Health-related quality of life and self-reported health status in adolescents with chronic health conditions before transfer of care to adult health care: an international cohort study. BMC Pediatr. 2024 Mar 8;24(1):163. doi: 10.1186/s12887-024-04629-x. |
| 37691321 | Derived | Tornivuori A, Kallio M, Culnane E, Pasanen M, Salantera S, Sawyer S, Kosola S. Transition readiness and anxiety among adolescents with a chronic condition and their parents: A cross-sectional international study. J Adv Nurs. 2024 Feb;80(2):756-764. doi: 10.1111/jan.15860. Epub 2023 Sep 10. |
| 34155079 | Derived | Kosola S, Culnane E, Loftus H, Tornivuori A, Kallio M, Telfer M, Miettinen PJ, Kolho KL, Aalto K, Raivio T, Sawyer S. Bridge study protocol: an international, observational cohort study on the transition of healthcare for adolescents with chronic conditions. BMJ Open. 2021 Jun 21;11(6):e048340. doi: 10.1136/bmjopen-2020-048340. |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D004066 | Digestive System Diseases |
| D005759 | Gastroenteritis |
| D005767 | Gastrointestinal Diseases |
| D007410 | Intestinal Diseases |
| D009140 | Musculoskeletal Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D018376 | Cardiovascular Abnormalities |
| D002318 | Cardiovascular Diseases |
| D006331 | Heart Diseases |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |