As the population of children with chronic illness expands, it is essential to understand how processes of care, such as the transfer of medical care from one provider to another, affect the short and long-term outcomes of our patients. The primary goal of this study was to describe a population of pediatric rheumatology patients during the time of transfer of care, and to determine if there was a significant change in disease outcomes, such as disease activity, during this critical time period. In addition, we hoped to improve our understanding of the health care needs of young adults with chronic rheumatic disease.
In the population of patients that we examined, the majority (58%) of subjects had active disease at the time of transfer. In addition, most were taking at least one medication to treat their rheumatic disease, and over half were hospitalized in the year prior to their transfer of care. Similar findings were seen in a study of a British cohort of adolescents with JIA, in which almost 80% of 17 year olds had active disease prior to transfer from pediatric to adult rheumatology, and almost two-thirds were on a DMARD [31
]. These findings highlight the importance of creating a transition system which provides seamless transfer of care between providers in order to meet the needs of these medically complicated patients.
Because of the difficulties that can arise in the transfer of care process, we hypothesized that there would be an increase in disease activity around the time of transfer. Although it is likely that our analysis was underpowered to demonstrate a statistically significant difference in median SLEDAI/global assessment scores, it is notable that 29% of subjects experienced a worsening of disease activity during the post-transfer follow-up time period. This increase in disease activity may be a result of the natural history of the disease process, but it may also reflect poor outcomes related to the transfer process. The pediatric solid organ transplant literature suggests that the transition from late adolescence to young adulthood is one of the most vulnerable periods for rejection and graft loss, due to a variety of factors, including medication non-adherence [32
]. Regardless of the cause, the high rate of disease flare in the post-transfer period emphasizes the need for a comprehensive and dependable process for these patients during this critical period.
Despite evidence of high disease activity, we were surprised that the average transfer time between the last pediatric rheumatology and first adult rheumatology visit, within the same institution, was over seven months. The number of missed appointments, which is likely a proxy for patient compliance, was high in both the pre and post-transfer periods, and may have contributed to the delay between the last pediatric and first adult visit. Given the complex medical needs of this population, any future transition program at our institution will address the obstacles that lead to delays to the first adult rheumatology appointment.
With regard to insurance, a significant percentage of subjects in our study transferred from public to private insurance, and all subjects had obtained insurance coverage in the post-transfer period. A recent study by Lotstein, et al highlighted the difficulties with access to care for youth with special health care needs living near Los Angeles, California [33
]. This study demonstrated that among a population of young adults with chronic disease, aged 21–24 years, 27% were without health care following discontinuation of their public insurance at the age of 21, and 39% had delays in necessary care as a result of lapses in insurance coverage. Given this data, it is likely that health outcomes could be worse for uninsured patients with chronic rheumatic disease.
Although the studies describing the clinical outcomes for pediatric rheumatology patients after transfer of care are limited, a small number of studies have examined the short term outcomes of patients who have transferred care in other health care systems or other disciplines. A recent study from France by Dugueperoux et al, examined the clinical changes of young adults with cystic fibrosis (CF) during transition from a pediatric to adult CF center [34
]. In this population, disease activity remained clinically stable over the transition period. In the discussion, the authors note that given the flexibility in the timing of transfer, all of the patients transferred care at a time when they had stable disease. In the United States, timing of transfer of care is often determined by insurance age limits, and not based on the patient's optimal clinical status.
We observed some important outcomes related to transfer of care and identified interesting trends which deserve further exploration in future prospective studies. However, there are several important limitations that need to be considered. Although few studies have described the outcomes of pediatric rheumatology patients after their transfer of care, the sample size for our study was small, thereby limiting the power for some of our analyses. The retrospective nature of this study limited the ability to assess certain factors which could affect the transfer of care process including self-management abilities, developmental maturity, medication adherence and vocational and educational attainment; all essential issues which would be addressed in a comprehensive transition program. In addition, as a result of the study design, disease activity was assessed through chart evaluations, and not through direct patient examination. Because of record availability, this study only examines the outcomes of subjects transferred within our institution, which limits generalizability to other settings. In our experience, the location of adult rheumatology follow-up is determined by multiple factors including the complexity of the patients' medical condition, post-transfer insurance status and the availability of adult rheumatologists in their local communities.