Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus
Susanna Felsenstein1, Andreas O Reiff2, Anusha Ramanathan2
1Children's Hospital Los Angeles, Los Angeles, California.
Insights
Transitioning pediatric patients with systemic lupus erythematosus (SLE) to adult care can be challenging, often leading to difficulties with insurance and emotional adjustment. Structured support is crucial for successful outcomes in adult rheumatologic care.
Area of Science:
- Rheumatology
- Pediatric Rheumatology
- Transition of Care
Background:
- Transition from pediatric to adult healthcare is a critical but complex process for individuals with chronic diseases.
- Pediatric-onset systemic lupus erythematosus (SLE) requires careful management during this transition to ensure continuity of care and optimal health outcomes.
- Understanding the challenges and outcomes associated with this transition is vital for improving patient care.
Purpose of the Study:
- To describe the transition experience of patients with pediatric-onset SLE to adult care.
- To identify factors associated with difficulties during the transition process.
- To evaluate medical and social outcomes in adulthood following the transition from pediatric care.
Main Methods:
- A telephone survey was conducted with 41 patients who had pediatric-onset SLE and had transitioned to adult care.
- Data collected included medical and social outcomes during and after the transition period.
- Patient health status post-transition was compared to baseline data from pediatric discharge.
Main Results:
- Over half of patients (22/41) experienced transition difficulties, mainly due to loss of insurance and emotional readjustment.
- These difficulties were linked to poorer symptom control and increased organ system involvement.
- New renal and neuropsychiatric manifestations were common post-transition, associated with unemployment; direct referral from pediatric rheumatologists correlated with fewer hospitalizations.
Conclusions:
- While most patients transitioned to adult rheumatologic care, significant challenges like insurance loss and attachment to pediatric providers persist.
- A structured transition process offering emotional and financial guidance is essential.
- Pediatric-onset SLE patients experience persistent disease activity in adulthood, with renal and neuropsychiatric issues being primary sources of morbidity.
Objective:
Transition from pediatric to adult care is a complex process and can negatively impact patients with chronic disease. We describe the transition experience of patients with pediatric-onset systemic lupus erythematosus (SLE) and its associated outcomes in adulthood.
Methods:
A telephone survey of 41 pediatric-onset SLE patients was conducted following their transition to adult care. Data on medical and social outcomes during and after the transition were collected. Health status was compared to retrospectively collected baseline data at pediatric discharge.
Results:
The mean ± SD followup interval was 5 ± 3.7 years; the mean ± SD age at followup was 24 ± 4.2 years. More than half of patients (22 of 41) experienced transition difficulties, primarily due to loss of insurance and emotional readjustment, which were associated with poor symptom control (P = 0.03) and multiple organ system involvement (P = 0.05) at followup. After the transition, most patients (35 of 41) were followed by an adult-care rheumatologist, and the majority (37 of 41) reported recent symptoms of active disease; 41% (13 of 29) had developed symptoms suggestive of new renal manifestations following transition. One-third (15 of 41) reported new or ongoing neuropsychiatric symptoms. Both renal and neuropsychiatric manifestations were associated with unemployment (P < 0.05). Direct referral by a pediatric rheumatologist was associated with fewer hospitalizations following transition (P = 0.04).
Conclusion:
The majority of patients transitioned successfully to adult rheumatologic care. Major challenges were loss of insurance and attachment to pediatric providers, highlighting the importance of a structured transition process that focuses on providing emotional and financial guidance. Disease activity in pediatric-onset SLE remains high throughout adulthood, with morbidity primarily related to renal and neuropsychiatric manifestations.
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