Transition to Adulthood Through Coaching and Empowerment in Rheumatology (TRACER)

TRACER: Transition to Adulthood Through Coaching and Empowerment in Rheumatology, A Feasibility Study

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.

Juvenile Idiopathic Arthritis, Juvenile Rheumatoid Arthritis, Juvenile Dermatomyositis, Juvenile Psoriatic Arthritis, Autoinflammatory Disease, Autoimmune Diseases, Lupus Erythematosus

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.

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.

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).

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

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.

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)