Objective
The transition from pediatric to adult rheumatology care represents a particularly vulnerable time for patients with juvenile idiopathic arthritis (JIA) and childhood‐onset systemic lupus erythematosus (cSLE). Improving self‐management skills is important in optimizing health care transition. The study’s objectives were to 1) examine variability in transition readiness of adolescents and young adults within and between different ages, sexes, and disease types; 2) determine the association between age and transition readiness; and 3) identify specific challenges to transition readiness for adolescents.
Methods
Over 1 year, patients 14 to 20 years of age with JIA or cSLE were recruited from pediatric transition and young adult clinics at a single academic institution. Participants completed the 14‐item Transition‐Q at a single time point. Total scores range from 0 to 100; higher scores indicate greater health care self‐management skills as a proxy for transition readiness. Descriptive statistics summarized patient characteristics and Transition‐Q scores for the population. Regression analyses determined the association between age, sex, and disease type and Transition‐Q score.
Results
Among 70 participants, 61 had JIA and 9 cSLE (mean disease duration 4.6 years). The mean (SD) total Transition‐Q score was 59.8 (14.9). Age was significantly associated with Transition‐Q score (standardized β = 0.372l P = 0.002). The most commonly reported challenges were seeing the physician alone (without parents), making one’s own appointments, picking up prescriptions, and independent transportation for appointments.
Conclusion
Transition readiness appears to increase with patient age. There is significant variability in Transition‐Q scores between patients of the same age, suggesting that an individualized approach to improving self‐management skills is necessary.
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.
weighting, all covariates were balanced in each comparison, with mean age 45 and 94% female; glucocorticoids were used by 56% of patients. Belimumab was associated with a lower incidence of severe infection (HR 0.81 [95% CI 0.72-0.92]) and hospitalization for infection (HR 0.73 [95% CI 0.57-0.94]) than was azathioprine through 5 years of use (table 2). Findings were similar for the other medication comparisons (figure 1). There was no difference in the risk of injury/ trauma. Conclusions In this large cohort of patients with non-renal SLE, after rigorous propensity score overlap weighting to balance multiple covariates, belimumab was associated with a lower risk of severe infection and hospitalizations due to severe infection compared to several comparative oral immunosuppressants. This finding should inform risk/benefit considerations for SLE treatment.
A 10-year-old boy with sickle cell disease (SCD) type SC presented with fever and abdominal pain after travel to Ghana and was diagnosed with Plasmodium falciparum infection. Despite adequate antimalarial treatment, he developed evidence of hyperinflammation with marked elevated ferritin, C-reactive protein, and triglycerides and subsequent bone marrow necrosis, characterized by elevated nucleated red blood cells and significant bone pain. This case report highlights the possible association between malaria and bone marrow necrosis in patients with SCD. Important considerations in treatment and workup of patients presenting with malaria and hyperinflammation are discussed.
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