Making a successful transition away from pediatric lupus care: Clinical team members offer insights
BY JENNIFER LUBELL
Youth resilience and family dynamics play key roles in transitioning lupus patients from pediatric to adult care. A survey of clinical health care providers in Texas found that educated, forward-thinking patients with mental and social supports were more likely to achieve success in making this care transition. The study, published in Arthritis Care & Research, called for structural improvements to better serve the mental and emotional needs of young people with childhood-onset systemic lupus erythematosus (cSLE) and encourage independence. Physically, the disease is quite aggressive – but studies have shown that cSLE patients also struggle with identity problems, social isolation, and low self-esteem. |
“The transition from pediatric to adult care can be a vulnerable period for any emerging adult with a chronic illness, but there is evidence that it may be especially challenging for patients with systemic lupus,” Nicole Bitencourt, MD, a rheumatologist with Loma Linda (Calif.) University Health’s department of pediatrics and the study’s lead author, said in an interview. To assess the psychosocial effects of transitioning cSLE patients from pediatric to adult care, investigators from several Texas medical facilities interviewed 13 providers from two pediatric and four adult clinical practice sites. All of the providers served the same cSLE population, which was predominantly female and ethnically diverse. The majority (60%) had public insurance. |
![]() Dr. Nicole Bitencourt |
Four pediatric rheumatologists and four adult rheumatologists from academic and private practice settings participated in the interviews, along with two nurses, a nurse practitioner, a social worker, and a psychologist. Questions centered on the role of family, mental health, and social support during transition, the ability of patients to cope and adjust, and external factors such as education, peer support, and social connectedness. Lapses in insurance coverage, level of family support, mental health, emotional and social support, psychosocial factors such as level of resilience, and the potential effects of lupus itself on neurocognitive and executive functioning, were often-cited reasons for poor transfers to adult care. Investigators noticed key cultural differences between pediatric and adult care during these interviews. “Pediatric care teams described trying to ‘fill the gap’ when parental guidance or modeling was perceived as lacking, while adult care teams placed greater emphasis on patient autonomy and independence for positive long-term outcomes,” Dr. Bitencourt said. The different approaches may be contributing to the difficulty some patients encounter when transferring to an adult system of care. Parenting styles and family support in guiding pediatric/adult care transitions influenced outcomes. Parents in some cases micromanaged their children, hindering their ability to become more independent, and cope with their disease. At the other end of the spectrum, chaotic home situations involving abuse, parent incarceration, food insecurity, or transportation or communication problems led to patient neglect and disengagement with the health care system. |
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Another survey of 203 rheumatologists in 2019 offered a broader perspective of the struggles associated with transitioning young adults with rheumatic diseases. Researchers identified substantial knowledge gaps in transitioning young adults with rheumatic diseases, citing lapses among primary and specialist providers and a lack of knowledge about community resources and poor reimbursement as major barriers to transitioning patients. Most of the survey respondents (92.9%) said they were unsatisfied with the current transition process. The American College of Rheumatology has published toolkits to guide physicians in transitioning patients from pediatric to adult care, focusing specifically on lupus and juvenile idiopathic arthritis. Dr. Bitencourt and coauthors had no relevant financial disclosures. |