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Majority of Rheumatologists Dissatisfied With Pediatric-to-adult Care Transition
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More than 92% of adult-care rheumatologists are unsatisfied with the current process of transitioning young adults from pediatric to adult care, and nearly half report they were never trained to treat patients with juvenile-onset diseases, according to survey data published in Arthritis Care & Research.
“Increasing patient survival, evidence of ongoing disease activity and organ damage in young adults with pediatric-onset rheumatic disease, and the negative long-term sequelae of pediatric-onset rheumatic disease on young adulthood highlight the need for an effective health care transition (HCT) process,” Devy Zisman, MD, of Carmel Medical Center in Haifa, Israel, and colleagues wrote. “While the attitudes of U.S. pediatric rheumatologists towards the HCT process have been studied previously, in general, there is a paucity of literature regarding U.S. adult subspecialty providers' perspective on the transition process.”
To determine the attitudes and practices common among U.S.-based adult-care rheumatologists regarding transition care for young adults with rheumatic diseases, Zisman and colleagues surveyed 4,064 members of the American College of Rheumatology. A total of 203 rheumatologists completed the survey and were included in the researchers’ final analysis.
The questionnaire included 28 questions designed by a group of adult and pediatric rheumatologists, based on a modified 2010 CARRA survey and the American Academy of Pediatrics/American College of Physicians/American Academy of Family Physicians 2002 and 2011 reports on health care transition. The survey assessed respondents’ practice, experience and knowledge regarding the transition process, as well as outcome measures and resources they considered important.
According to the researchers, 45.1% of respondents included in the study reported they were never trained in transition practices, and 74.7% said they were unfamiliar with the AAP/AAFP/ACP Consensus Statement About Transitions for Youth with Special Healthcare Needs. In addition, just 56.2% reported they were comfortable treating adult patients with childhood-onset rheumatic diseases. As many as 90.7% lacked a multidisciplinary transition team, and 37% failed to have any plan for transitioning pediatric patients into their practice.
Nearly all of the respondents — 92.9% — reported dissatisfaction with the current transition process. Asked to explain this dissatisfaction, 91.1% cited insufficient resources and personnel, whereas 86.9% pointed to a lack of time in their clinic. In addition, 48.9% reported they were unsatisfied with referral data on previous treatments for transition patients, and 48% expressed dissatisfaction with data regarding previous hospitalization history. Asked to identify major barriers to health care transition, 33.7% said lack of reimbursement, 30.8% said knowledge regarding community resources and 27.8% cited lapses in care between primary care and specialists.
“This survey of rheumatologists caring for adults demonstrated substantial gaps in knowledge and resources to support the transition from pediatric to adult care for patients with pediatric onset rheumatic diseases,” Zisman and colleagues wrote. “Further evidence-based guidelines, research, dedicated resources for the HCT process, reimbursement for provider time, improved infrastructure for coordinated care and adoption of innovative methods to track transition of care and measure outcomes can serve to address these gaps, thereby improving the quality of health care delivered to young adults as they enter adult-oriented care.” – by Jason Laday
Disclosure: Zisman reports no relevant financial disclosures. Please see the study for all other relevant financial disclosures.
Perspective
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David A. McLain, MD, FACP, FACR
As pediatric rheumatology patients age — with an estimated 300,000 children with arthritis in the United States — they need to transition to an adult rheumatologist if their disease remains an issue for them, which studies have found to be the case in 40-70% of patients.
The study by Zisman and colleagues surveyed U.S. adult rheumatologists with an equal split between university-based and community-based practice settings, half of whom were in practice for over 15 years.
Unfortunately, only 5% of adult rheumatologists responded but of those, 96% practiced within close proximity to a pediatric rheumatology clinic. Almost half of the respondents had never been trained in transition and three-quarters were unaware of the AAP/AAFP/ACP Consensus Statement on Health Care Transitions for Youth with Special Health Care Needs. Only a slight majority (56%) of adult rheumatologists were comfortable seeing pediatric patients who were transitioning to their clinic.
Reported transition barriers included lack of data regarding the patient’s disease activity, previous hospitalizations, past medical history, comorbidities and previous treatments. Adult rheumatologists were also not satisfied with the lack of resources, personnel and time for a transition plan.
With half of juvenile idiopathic arthritis patients continuing to have active inflammatory disease into adulthood, this is an important area of concern for adult rheumatologists. EULAR and the Pediatric Rheumatology European Society have released the first set of international standards for transitional care of young patients with juvenile-onset rheumatic illness. We will, no doubt, see further progress in this area as biologic agent use has become common in the pediatric age group. Both the vast majority of adult and pediatric rheumatologists (84%) want specific transition guidelines developed.
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