The transition from pediatric to adult rheumatology care through creating positive and productive patient-provider relationships: an opportunity often forgotten

Abstract

Abstract Background The transition of patients with a chronic rheumatic disease from pediatric to adult care has been characterized by poor medical and patient-centered outcomes due to the lack of comprehensive transition programs and the paucity of evidence to guide practitioners. We describe a multidisciplinary transition program, data assessing patients’ preparedness for transition and perception of care providers, and the association between these outcomes. Content Patients aged 14–19 with childhood-onset systemic lupus erythematosus (cSLE) or juvenile idiopathic arthritis (JIA) were recruited from Rheumatology Transition Clinics and Young Adult Clinics at a single institution. Participants completed the TRANSITION-Q, which assesses healthcare self-management skills as a proxy for transition readiness, and the Consultation and Relational Empathy Scale (CARE) questionnaire, which measures patients’ perception of their providers’ care and empathy. Summary Among 63 participants, 87% had JIA (mean age 16.5 years). Age was the only patient characteristic positively associated with TRANSITION-Q scores. CARE scores revealed overwhelmingly positive interactions between patients and healthcare team members. TRANSITION-Q and CARE scores were positively correlated. Outlook The transition from pediatric to adult rheumatology care should be recognized as an opportunity to impact the trajectories of patients entering adult care where the patient-provider relationship may play an important role.