Children with lupus who have transferred their care from pediatric to adult providers are less likely to be cared for by a rheumatologist (93.6% vs. 68.4%), have lower rates of medication usage, such as hydroxychloroquine (100% vs. 89.5%), and report worse health-related quality of life than those who are still being seen by their pediatric providers. Individuals that transition their care report similar disease activity, flare rates, and disease manifestations as those who have not yet transferred care. Transition of care refers to a structured process starting in early adolescence that aims to prepare patients and families for transfer of care to an adult provider, which often occurs between the ages of 18 and 22.
A group of 85 persons participating in the Pediatric Lupus Outcomes Study of persons ages 18-30 were surveyed. Of the group, 47 were receiving care from a pediatric rheumatologist (pre-transfer group) and 38 had transferred their care from a pediatric rheumatologist to an adult provider (post-transfer group). The researchers examined differences in their disease activity and health-care utilization, as well as potential barriers to successful transfer. Other findings included:
- Children that transferred to an adult provider (post-transfer) saw a significantly longer disease duration (10.9 years vs. 5.5 years) and had significantly more lung disease (29% vs. 6.4%).
- The post-transfer group had significantly lower perceived general health (47.1 vs 58.2) and social functioning (75 vs 100) when compared with the pre-transfer group.
- While both pre- and post-transfer groups had similar rates of health insurance coverage (95.7% and 89.5%), post-transfer participants were more likely to report difficulties obtaining insurance (34.2 vs. 10.6%).
Although more commonly diagnosed in adults, 15–20% of SLE patients are diagnosed in childhood (age <18 years). This is a unique study, examining pre- and post-transfer populations. Several study participants reported difficulties with transition that they felt contributed directly to increased disease activity. More study to understand how transfer may lead to decreased health-care utilization is important in order to better counsel and guide children with lupus through the transition process. Learn more about the impact of lupus in children and teens.
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July 13, 2020 at 07:00PM
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Children with Lupus who Transfer to Adult Care are Less Likely to Access Care - Lupus Foundation of America
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