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

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.

Transitioning from pediatric to adult healthcare with an inborn error of immunity: a qualitative study of the lived experience of youths and their families

“…The impact that one or few healthcare professionals can have on the general transition experience was evident in our result, and is in line with previous research that illustrate how positive experiences with one good clinician can translate into positive perception about care services in general ( 28 ). These positive perceptions can have long lasting effects such as recent evidence that demonstrates increased self-management skills are acquired by youths who receive care in contexts where relational qualities such as empathy and compassion are privileged ( 29 ).…”

Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care

“…Enhanced engagement with healthcare providers and improved adherence to medication were noted, leading to reduced transplant failure rates compared with historical controls (32). Semalulu et al described a similar joint transition program for youth with juvenile idiopathic arthritis and systematic lupus erythematosus (33). From 14 to 18 years of age, patients had concurrent pediatric and adult rheumatologist visits as part of a multi-disciplinary pediatric team; provision of care by the adult rheumatologist continued till 22 years of age following transfer to the young adult clinic.…”

“…From 14 to 18 years of age, patients had concurrent pediatric and adult rheumatologist visits as part of a multi-disciplinary pediatric team; provision of care by the adult rheumatologist continued till 22 years of age following transfer to the young adult clinic. The study described trust as a key component of transition preparedness, with favorable perceptions of patient-provider relationships increasing with age (33). Van Pelt et al conducted a longitudinal observational study of an intra-agency nurse facilitator model for youth with juvenile idiopathic arthritis with pediatric and adult clinics within the same medical centre (34).…”