Autoimmune Diseases, Autoinflammatory Disease, Juvenile Dermatomyositis, Juvenile Idiopathic Arthritis, Juvenile Psoriatic Arthritis, Juvenile Rheumatoid Arthritis, Lupus Erythematosus
Conditions
Keywords
transition care, transition coaching
Brief summary
TRACER is a study aiming to investigate the feasibility of transition coaching sessions for patients moving from paediatric to adult rheumatology care.
Detailed description
TRACER is a feasibility study investigating transition coaching for patients with rheumatic disease transferring from paediatric to adult rheumatology care. This is a vulnerable time in the patients' care and life as they are assuming more responsibility for their health and undergoing significant life transitions. There is risk for increased morbidity and mortality around this time if the patient are not well supported and if they do not stay engaged with care. This intervention aim to provide self-efficacy, self-management, coping skills and support to patients making the transition. This study aims to assess the feasibility of conducting a multi-centre randomized trial.
Interventions
BEHAVIORALTransition coaching
Transition coaching sessions (8 sessions), covering paediatric to adult care, self-advocacy, medication management, general health, lifestyle and behaviours, future planning, screening for mood disorders and coping skills.
Sponsors
McMaster University
Western University
Study design
Allocation
RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
17 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Patient with pediatic-onset rheumatic disease * At their last paediatric rheumatology appointment prior to transferring to adult rheumatology care * Able to communicate in English * Have a phone or device capable of participating in video conference * Available over the next 8 months
Exclusion criteria
* Cognitive impairment preventing participation in individualized education sessions (as determined by medical staff)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Outcome measure completion | 3 year study period | % of outcome assessments completed at 8 months (end of transition coach invention) |
| Missing data | 3 year study period | % of missing data |
| Consent rate | 19 month recruitment period | % of patients approached who consent to the study |
| Enrolment from non-primary site | 19 month | % of patients enrolled from non-primary site |
| Virtual session attendance | 3 year study period | % of transition coaching sessions attended |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Physician Global Assessment (PGA) | 3 year study period | Descriptive statistics of physical global assessment at baseline and at subsequent follow-up, between the two groups. Physician Global Assessment refers to MD assessment of disease activity and is rated between 0 (no disease activity) and 10 (most active disease). |
| Global function/quality of life | 3 year study period | Descriptive statistics of PedsQL (Paediatric Quality of Life Inventory) 4.0 Generic Core Scales Young Adult Version questionnaire results at baseline, 8 months and 11 months, between the two groups. |
| Patient Reported Outcomes Measurement Information System (PROMIS) questionnaire | 3 year study period | Descriptive statistics of PROMIS questionnaire (person-centered measures to assess how people feel and function) results at baseline, 8 months and 11 months, between the two groups. |
| Active joint count | 3 year study period | Descriptive statistics of active joint count (joints with evidence of active inflammation - including swelling, tenderness, loss of ROM) at baseline and at subsequent follow-up, between the two groups |
Countries
Canada
Contacts
PRINCIPAL_INVESTIGATORMichelle Batthish, MD
McMaster University
Outcome results
None listed