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.

“While familial and socioeconomic factors were viewed as important, many stressed that it was the youth’s level of resilience, resourcefulness, and coping mechanisms that ultimately dictated their level of success in the transition,” the investigators noted. Youths with a positive attitude who were educated about and engaged in their care, and had good problem-solving and organizational skills, had a higher success rate in transitioning to adult care. Such patients often had a life plan after high school. “You have incredibly resourceful kids who’ve come from very stressful, difficult backgrounds and yet they’re still working their job while they’re in high school. [They] do the best,” one respondent said. Young patients who are in denial of their disease or had an angry or “victim” mindset faced more barriers. These patients essentially give up, don’t prioritize medication compliance, or fail to acknowledge that their disease could kill them, said another provider in the survey. Teaching young patients coping skills is achievable but requires guidance and resources. Success depends on family engagement, and having an understanding of the disease, important therapies, and the workings of the health care system. Peer support and networking is also important for relieving social isolation, promoting normalization, and empowering patients, according to survey respondents. “Health care systems should consider the role of resilience and positive coping mechanisms and how to strengthen these in youth, families, and communities,” Dr. Bitencourt said. Events such as lupus camps would help connect these patients socially and teach them about living with their disease. Modeling to parents how to promote gradual independence and self-care in their children would ease such transitions to care, the study authors suggested. Patients should also be screened for any psychosocial vulnerabilities to identify intervention needs. The study took place in one major metropolitan area and reflected the views of only two mental health professionals, possibly limiting its scope. The investigators acknowledged that interviews with parents and patients may have achieved more robust findings. “Since then, we have interviewed youth and young adults with SLE regarding the psychosocial aspects of transition and the potential role of peer support. We hope to have these results out soon to complement our initial findings,” Dr. Bitencourt said.

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.