On Treating Peter Pan: The Rough Road to Adult Rheumatology


(ACR Pediatrics 2014) Children growing into young adults with rheumatic diseases often fail to get the care they need, for numerous complicated reasons. The ACA could change all this, with implications for adult rheumatologists. Here, a brief look at the situation and some solutions.

Long a hot topic for pediatric rheumatologists, the transition of child patients to adult-level care should soon be catching the attention of more adult rheumatologists. Payment models to incentivize better collaboration between pediatric and adult rheumatologists are in planning, said one speaker on a panel at the American College of Rheumatology’s pediatric rheumatology symposium (ACR-PRSYM) in Orlando. But at present, just as the US health system is aggressively luring young adults into care, scarcely any rheumatology practices have formalized plans to help them mature in the way they relate to their doctors.

“The time is now,” said Patience White MD, the Arthritis Foundation’s Vice President of Public Policy and Advocacy . “People are very focused on this, particularly with regards to the ACA,” adding that there is a need “to focus more on the roles and responsibilities of adult providers receiving transitioning youths.”

Below, the shape of the problem (partly drawing on a recent survey) and some emerging solutions:

Panel members:

Peter Nigirovic MD, Director, Center for Adults with Pediatric Rheumatic Illness, Brigham & Womens HospitalPeter Chira MD, pediatric rheumatologist, Indiana University’s Riley Hospital for Children in IndianapolisLisa Imundo MD, Director of Pediatric Rheumatology, Columbia University College of Physicians and SurgeonsErica Lawson MD, Assistant Professor, Department of Pediatrics, University of California-San FranciscoPatience White MD, Vice President of Public Policy and Advocacy, Arthritis Foundation, and Professor of Medicine and Pediatrics at George Washington University

How commonly do pediatric rheumatic conditions persist to adulthood?

Nigirovic:  There’s “frustratingly little information.”
•   Juvenile idiopathic arthritis:  50% (“but that could be way off. I don’t think we know”)
•   Lupus and scleroderma: 80-100% (“They never go away”)
•   Myositis and vasculitis: “there’s no good followup data.”

“Even if the disease goes away, the sequelae may not.”

When do most young people with rheumatologic conditions shift to adult providers?

Insurers may assume that kids with rheumatological diseases enter adult care at 18 or 19. That would a misperception.

According  to a survey of members of CARRA (Childhood Arthritis and Rheumatology Research Alliance) published this month:
•  43% of pediatric rheumatologists initiate transfer between 15-17 years
•  More than 50% of pediatric providers are  still "very frequently" seeing patients over the age of 18
•  Over 80% also see many patients over 19
•  37% plan to transfer at 19-20 but 47% still have patients older than age 21 (Chira)

Why is the transition difficult?

  • Maturity comes only gradually, and at different ages. Patients between 18 and 25 are still growing up  (Nigirovic)
  • The shift from warm and supportive (pediatric) to cold, efficient, and impersonal (adult) is a “culture shock.” (Nigirovic) “They don’t like the new providers or the care they get, which is problem oriented. We would give them a list of names and find out years later that they hadn’t kept up. We would hear about some very bad outcomes, like deaths.” (Imundo)
  • Young adult patients are unlikely to understand, listen to, or accept what they’re told. “The issue of reading levels comes up over and over.” (White). Best to assume that they read at a 5th grade level. Will the patient adhere to treatment recommendations without intensive support? (Anybody’s guess.)
  • Adult providers are not adept at “reading” young adult communications (or noncommunications) about their conditions, or at treating them. “Sometimes they really didn’t realize how sick patients were, and would try to withdraw a successful therapy, like anticoagulants after stroke.” (Imundo)

What are the chief drivers of the transition to adult care?

•   “Provider and patient fatigue:” They’re sick of each other. (Nigirovic)
•   75% of time the change is due to the patient’s initiative (CARRA survey)

What models exist for successful transition?

Brigham & Women’s CAPRI (Center for Adults with Pediatric Rheumatic Illness). Founded in 2005. Provides care for local college students and second opinions for patients with related conditions. Staff: MDs, a designated nurse, a social worker, a limited subspecialist referral network (ophthalmologist, orthopedics, cardiologists). Lupus patients often go directly to the SLE clinic. (Nigirovic)

Columbia-Presbyterian Medical Center:  Currently creating a separate transition clinic within the adult rheumatology division for all patients ages 12-26 with lupus, scleroderma, and arthritis, providing additional time for each visit and additional support staff. Those younger than 17 will be treated by adult and pediatric fellows in rotation, as an opportunity for them to train each other. “We hope to teach our adult colleagues to recognize when patients need more aggressive treatment and how patients got to be the way they are.” (Imundo)

What resources are available to help with the transition?

The CARRA survey found that only 8% of respondents had a written transition policy. Canadians (44% vs 5%) and multidisciplinary teams (64% vs 26%) were more likely to have written policies.  (Chira)

A joint effort of the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians has created core elements of a successful transition policy (See box below). More information is available at www.GotTransition.org (White)

The Arthritis Foundation has created a Transition Toolkit, available online, to help patients and families prepare for the transition in care. Resources include a tracking feature to monitor patient progress between visits, which can be used by families or providers and in the clinic as well as at home. The Foundation is hoping to build a new section of separate resources for pediatric and adult providers, including transition policies and best practices.  (Lawson)

Six Core Elements of Health Care Transition for Adult Providers (summarized)
•  Develop a transition policy, and educate staff about it
•  Establish process for identifying transitioning young adults until age 26 and enter them into a registry
•  Identify adult providers interested in caring for young adults, and establish a process to welcome young adults and inform them about the practice. 
•  Communicate with pediatric provider(s) and arrange for consultation if needed. Assure that emergency care plan and legal documents are in place. Make pre-visit appointment reminder call to identify any special needs and preferences.
•  Transfer care
        1.  Review transfer information from pediatric provider.
        2.  Address any concerns young adult has about transition, and review their health priorities and emergency care plan
        3.  Conduct self-care assessment if not already done
•  Complete transfer
        1.  Communicate with pediatric praactice confirming transfer
        2.  Assist young adult to connect with other support services as needed
        3.  Build ongoing and colllaboartive partnerships with pediatric providers.


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