Healthcare Transition of Adolescents With Chronic Health Conditions

NCT ID: NCT04631965

Last Updated: 2021-12-21

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

503 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-09-01

Study Completion Date

2023-12-31

Brief Summary

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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.

Detailed Description

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Conditions

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

Keywords

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adolescent

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Cohort in Finland

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

No interventions assigned to this group

Cohort in Australia

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

Transition support service

Intervention Type BEHAVIORAL

The hospital-wide transition support service provides systematic care coordination for young patients prior to the transfer of care

Interventions

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Transition support service

The hospital-wide transition support service provides systematic care coordination for young patients prior to the transfer of care

Intervention Type BEHAVIORAL

Eligibility Criteria

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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
Minimum Eligible Age

15 Years

Maximum Eligible Age

20 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Pediatric Research Center

UNKNOWN

Sponsor Role collaborator

Foundation for Medical Research

OTHER

Sponsor Role collaborator

Foundation for Paediatric Research, Finland

OTHER

Sponsor Role collaborator

The Paulo Foundation

OTHER

Sponsor Role collaborator

Royal Children's Hospital

OTHER

Sponsor Role collaborator

Murdoch Childrens Research Institute

OTHER

Sponsor Role collaborator

University of Melbourne

OTHER

Sponsor Role collaborator

University of Helsinki

OTHER

Sponsor Role lead

Responsible Party

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Silja Kosola, MD PhD

Adjunct professor in Adolescent Medicine

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Royal Children's Hospital

Melbourne, Victoria, Australia

Site Status

Pediatric Research Center

Helsinki, Uusimaa, Finland

Site Status

Countries

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Australia Finland

References

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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.

Reference Type DERIVED
PMID: 39566994 (View on PubMed)

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.

Reference Type DERIVED
PMID: 38768988 (View on PubMed)

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.

Reference Type DERIVED
PMID: 38459510 (View on PubMed)

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.

Reference Type DERIVED
PMID: 37691321 (View on PubMed)

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.

Reference Type DERIVED
PMID: 34155079 (View on PubMed)

Other Identifiers

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U1011SILTA

Identifier Type: -

Identifier Source: org_study_id