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| Name | Class |
|---|---|
| Western University | OTHER |
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TRACER is a study aiming to investigate the feasibility of transition coaching sessions for patients moving from paediatric to adult rheumatology care.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Standard care - control | No Intervention | Standard of care, appointments with adult rheumatology | |
| Transition coaching - experimental | Experimental | Participants will receive 8 transition coaching sessions (1/month) in addition to standard care |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Transition coaching | Behavioral | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Consent rate | % of patients approached who consent to the study | 19 month recruitment period |
| Enrolment from non-primary site | % of patients enrolled from non-primary site | 19 month |
| Virtual session attendance | % of transition coaching sessions attended | 3 year study period |
| Outcome measure completion | % of outcome assessments completed at 8 months (end of transition coach invention) | 3 year study period |
| Missing data | % of missing data | 3 year study period |
| Measure | Description | Time Frame |
|---|---|---|
| Patient Reported Outcomes Measurement Information System (PROMIS) questionnaire | 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. | 3 year study period |
| Physician Global Assessment (PGA) |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Michelle Batthish, MD | McMaster University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| McMaster Children's Hospital | Hamilton | Ontario | L8N 3Z5 | Canada | ||
| Children's Hospital at London Health Sciences Centre |
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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). |
| 3 year study period |
| Active joint count | 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 | 3 year study period |
| Global function/quality of life | 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. | 3 year study period |
| London |
| Ontario |
| N6A 5W9 |
| Canada |
| ID | Term |
|---|---|
| D001171 | Arthritis, Juvenile |
| D003882 | Dermatomyositis |
| D001327 | Autoimmune Diseases |
| ID | Term |
|---|---|
| D001168 | Arthritis |
| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D007154 | Immune System Diseases |
| D017285 | Polymyositis |
| D009220 | Myositis |
| D009135 | Muscular Diseases |
| D009468 | Neuromuscular Diseases |
| D009422 | Nervous System Diseases |
| D012871 | Skin Diseases |
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