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.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
26
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.
McMaster Children's Hospital
Hamilton, Ontario, Canada
Children's Hospital at London Health Sciences Centre
London, Ontario, Canada
Consent rate
% of patients approached who consent to the study
Time frame: 19 month recruitment period
Enrolment from non-primary site
% of patients enrolled from non-primary site
Time frame: 19 month
Virtual session attendance
% of transition coaching sessions attended
Time frame: 3 year study period
Outcome measure completion
% of outcome assessments completed at 8 months (end of transition coach invention)
Time frame: 3 year study period
Missing data
% of missing data
Time frame: 3 year study period
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.
Time frame: 3 year study period
Physician Global Assessment (PGA)
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).
Time frame: 3 year study period
Active joint count
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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
Time frame: 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.
Time frame: 3 year study period