Transitional Care

Successful Transition from Pediatric to Adult Rheumatology Care Is Challenging But Possible

Author:
Kimberly DeQuattro, MD
Clinical Fellow, Department of Medicine, University of California San Francisco

Citation: DeQuattro K. Successful Transition from Pediatric to Adult Rheumatology Care Is Challenging But Possible [Published online November 13, 2018]. Rheumatology Consultant.

At the American College of Rheumatology/Association of Rheumatology Health Professionals (ACR/ARHP) Annual Meeting in Chicago in October, there were a number of transition-related programs demonstrating transition is a priority for ACR and ARHP members. The programs sought to address the many challenges associated with transferring and transitioning patients with childhood onset rheumatologic diseases from pediatric to adult-oriented health care. While transfer is the change from a pediatric to an adult provider, it is only one component of health care transition. Transition is “a process of moving from a child to an adult model of health care with or without a transfer to a new clinician.”1,2  Thus, a patient who transfers at 18-years-old ideally also participates in a transition process that spans a period from 10- to 12-years-old through 24- to 26-years-old. Challenges vary with each of the stakeholders—patients/caregivers, providers, the healthcare system—and pediatric onset rheumatologic disease processes themselves can impede successful transition. 

Barriers at the patient/caregiver level include lack of exposure to the transition process, difficulty taking medications or attending clinic regularly, and the strong bond of pediatric patients/caregivers to pediatric providers. Pediatric providers also may have difficulty letting go of their pediatric patients and have limited communication with adult providers to coordinate care, which is often compounded by fragmented medical records.3 Broad systemic factors that impact transition include socioeconomic status, health literacy, and in the United States, insurance coverage. Insurance changes are potentially dangerous for AYA patients since they can coincide with transferring care to adult providers. If coverage is lost and a new plan is not in place, AYA patients can run out of medications which can lead to flares and urgent/emergent care utilization and hospitalizations. Lack of insurance reimbursement for transition-related care—such as compiling a medical record for transfer or contacting an adult or pediatric colleague—may deter providers from the time-consuming transition processes. Since transition spans years of a patient’s life and two different models of care, time, money, and personnel are optimal but scarce resources. 

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From a disease standpoint, pediatric onset rheumatologic conditions can be active during the transfer period. Even without insurance gaps, active disease at transfer can be associated with loss to follow-up and unsuccessful transfer and transition. A chronic rheumatologic condition amplifies the already difficult developmental stage of adolescence, even in the most resilient young patients. 

Though setting up transition programs can be daunting, implementation of simple transfer initiatives can be the first steps towards improving AYA transition processes. In our small study presented at the ACR/ARHP Annual Meeting3, the efforts by the pediatric rheumatology division at our institution to implement a transition policy, identify transitioning patients, and hold quarterly transition planning rounds made an impact by significantly decreasing transfer time. At our institution, pediatric social workers facilitate transition discussions with AYA and caregivers as early as 12-years-old and document transition plans in the electronic health record.

From our study, 54% of patients transferred successfully. Our data echo other reports in rheumatology with successful transfer rates of 40-50%. It would be ideal if this percentage, in conjunction with effective transition programs, could exceed 80%. Efforts to overcome barriers to successful transition are ongoing. Got transition3 —a federally funded organization—has worked closely with ACR4 to create transition resources for modification and use by rheumatology providers for patients.

 

Actionable ideas on how to surmount barriers to effect positive change for our transitioning patients: 

 

For patients and/or caregivers: 
•    Proactively address transfer/transition with providers;
•    Seek ways to be engaged about health, independence and resilience; 
•    Maintain medical records—caregivers might initiate this process and patients can assume responsibility gradually over time; and
•    Utilize technology such as smartphone applications, embedded medical ID (iPhone) to help manage appointments and health records.   

 

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For providers: 
•    Identify a transition team including social workers, nurses, medical assistants, transition coordinators, patient and caregiver navigators; 
•    Develop a transition process modeled off existing resources3,4 including a transition policy, confidentiality policy, query to identify transition-aged patients, transition planning rounds, and means to track progress; 
•    Involve patients and caregivers in the transition process; 
•    Discuss realistic expectations for differences between pediatric and adult models of care with the transition team and consistently communicate these expectations with patients and providers;  
•    Discuss transition early with patients/caregivers and repeat themes as needed; 
•    See patients alone for at least some part of the visit without caregivers; 
•    Harness audio, video and web technology for transition team interfacing with patients and warm handoffs between pediatric and adult providers;
•    Compile accurate medical histories, particularly of clinical manifestations and treatments;
•    Create ways to accommodate AYA such as reminders and scheduled urgent slots in clinic panels;
•    Strive to transfer patients when to new providers 3-6 months from the last pediatric visit when disease is controlled; 
•    Engage in cross-institutional discourse to share transition materials; 
•    Seek opportunities to address needs of transition aged patients during visits which may include immunizations, bone health, sexual and reproductive health, physical activity, social and mental health and school and vocational aspirations; and
•    Facilitate research to improve care quality for AYA patients and to understand the pathophysiology and longitudinal outcomes of childhood onset disease. 
 
For the system: 
•    Understand that AYA are a vulnerable population and that pediatric onset rheumatologic conditions persist through adulthood; 
•    Continue to revise transition guidelines and standards with formal transition processes; 
•    Provide insurance support dedicated to transition-aged patients; 
•    Build infrastructure in health records to facilitate compilation of health summaries for providers; 
•    Offer incentives and financial support for transition efforts; 
•    Create educational opportunities for different types and stages of learners around AYA needs; and
•    Support patient/provider research efforts around transition.

The key for rheumatologists, allied healthcare professionals and funding bodies is to understand that AYA patients are a vulnerable population. During the transition process, this group deserves resources often lacking in today’s medical environment. More individuals with rheumatologic conditions diagnosed in childhood are living into adulthood and will need to transition when they mature. Adolescence, especially when amplified by concurrent rheumatologic disease, will always be a difficult time in development. The longitudinal experience at our center encourages continued initiatives for transfer improvement. Such initiatives must continually be tested, refined and applied to larger transition process implementation. As evidenced by the programming at this year’s ACR/ARHP Annual Meeting, many rheumatologists and allied health professionals are actively aiming to improve transition. Although there is no “one-size-fits-all” solution, we must continue to share experiences across institutions to inform better care and support for our vulnerable AYA patients during transition. 

 

References:

  1. White PH, Cooley WC, Transitions Clinical Report Authoring Group, et al. Supporting the health care transition from adolescence to adulthood in the medical home [Published online October 22, 2018]. Pediatrics. http://pediatrics.aappublications.org/content/142/5/e20182587.
  2. DeQuattro K, Evans M, Hersh AO, Yazdany J, von Scheven E, Lawson E. A quality update: improved transfer time among rheumatology patients transferring from pediatric to adult care at an academic medical center. Paper presented at: 2018 ACR/ARHP Annual Meeting; October 19-24, 2018; Chicago, IL. https://acrabstracts.org/abstract/a-quality-update-improved-transfer-time-among-rheumatology-patients-transferring-from-pediatric-to-adult-care-at-an-academic-medical-center/. Accessed October 24, 2018.
  3. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011 Jul;128(1):182-200.
  4. https://www.gottransition.org
  5. Pediatric to Adult Rheumatology Care Transition. https://www.rheumatology.org/Practice-Quality/Pediatric-to-Adult-Rheumatology-Care-Transition. Accessed November 7,2018.