An international expert panel has released new standards and guidelines for the transitional care of young people with juvenile-onset rheumatic diseases (jRMD) on behalf of the European League against Rheumatism (EULAR) and the Paediatric Rheumatology European Society (PReS). The document was in the Annals of the Rheumatic Diseases.
According to the authors, “transition focuses on the administrative event of transfer of care between paediatric and adult providers; transition encompasses the process by which young people acquire skills and access resources to ensure that their physical, psychosocial, educational and vocational needs are met during transition to adulthood.” They note that up to 50% of young patients with jRMD fail to successfully transition to adult rheumatology services, and thus are at risk for suboptimal outcomes.
Dawn M. Wahezi, MD, MS, attending physician in Pediatric Rheumatology, Division of Pediatric Rheumatology, Montefiore Health System, told Rheumatology Advisor in an email interview that adolescents and young adults with pediatric rheumatologic diseases often lack a full understanding of their disease and the necessary skills to independently manage their own medical care. “Pediatricians and pediatric subspecialists often take a very hands-on approach to caring for children with chronic diseases, such as assisting them in obtaining prescriptions, making doctor appointments, calling with frequent appointment reminders, etc. Although done with the best intentions, this approach may not allow the adolescent to foster their own independence in a medical setting.”
The document includes 12 standards and recommendations for transitioning young patients with jRMD, and details the necessary timing, documentation, communications, training, funding, roles, and platform for dissemination. The document also recommends an expanded research agenda on the transition process in to increase evidence-based knowledge and practice.
Although the authors state that the purpose of the recommendations is to “increase the profile of transition, optimize delivery of transitional care and improve patient experience within rheumatology across European countries,” they are also applicable to rheumatology practice in the US, according to Dr. Wahezi. “The goal is to assess individual readiness, provide clear roles to providers and families, document a clear transition policy, and enhance communication amongst all those involved.”
She notes that the Children’s Hospital at Montefiore (Bronx, New York) has several quality assurance initiatives in place to assess patient readiness and begin the transition process early in adolescence. “We have also made great efforts to enhance direct communication with our adult rheumatology colleagues to assure a seamless transition. We will certainly use these guidelines to help improve our current policies, ensuring a more formal transition procedure, in an effort to improve future outcomes for these patients.”
Summary & Clinical Applicability
“These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for [young people] with jRMD based on available evidence and expert opinion,” the expert panel wrote. “They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.”
This study was supported by a European League Against Rheumatism grant. No competing interests were declared by the authors.
Foster HE, Minden K, Clemente D, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2016 Nov 1. doi:10.1136/annrheumdis-2016-210112 [Epub ahead of print]