US Adult Rheumatologists Perspective on the Transition Process for Young Adults with Rheumatic Conditions

Devy Zisman^1,2, Patience White³, Peter Chira⁴, Stacy P. Ardoin⁵, Erica F. Lawson⁶, Emily von Scheven⁷, Idit Lavi⁸, Laura Tarter⁹ and Elizabeth D. Mellins¹⁰, ¹Technion, The Ruth and Bruce Rappaport Faculty of Medicine, Haifa, Israel, ²Carmel Medical Center, Haifa, Israel, ³Department of Medicine, Division of Rheumatology, The George Washington University, Washington, DC, ⁴Pediatric Rheumatology, University of California San Diego, Rady Children's Hospital, San Diego, CA, ⁵Pediatric & Adult Rheumatology, Ohio State University, Columbus, OH, ⁶Pediatrics, University of California San Francisco, San Francisco, CA, ⁷Dept of Pediatric Rheumatology, Univ of California San Francisco, San Francisco, CA, ⁸Department of Community Medicine and Epidemiology, Carmel Medical Center, Haifa, Israel, ⁹Rheumatology, Stanford University Hospital, Stanford, CA, ¹⁰Dept of Pediatrics CCSR, Stanford University Med Ctr, Stanford, CA

Meeting: 2015 ACR/ARHP Annual Meeting

Date of first publication: September 29, 2015

Keywords: Transition and young adults

Session Information

Date: Monday, November 9, 2015

Title: Health Services Research Poster II (ACR): Healthcare Access, Patterns of Medication Use and Workforce Considerations

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: To assess the attitudes and common practices of adult rheumatologists in US regarding transition of young adults with rheumatic diseases from pediatric to adult care.

Methods: An online survey was sent to adult and combined adult and pediatric rheumatologist members of the ACR who practice in U.S. The anonymous questionnaire included demographic data, questions about attitudes and common practices regarding the transition process.

Results: 203 of 4064 (5%) rheumatologists completed the survey. Among them, 178 (87.7%) were board certified in rheumatology and 11 (5.4%) were certified in adult and pediatric rheumatology; 14 (16.9%) were fellows. 92 (45.7%) work in a university clinic and 85 (42.9%) in private practice, 67 (34%) had practiced <10 years and 113 (57.6%) >15 years. 88 (45.1%) were never trained in transition practices, and 133 (74.7%) were not familiar with the American Academy of Pediatrics consensus statement about transition care for youth with special healthcare needs. 71 (37%) had not developed a plan for integrating former pediatric patients into their practice; 43 (22.4%) do not have a written transition policy, but follow an informal procedure and 27 (14.1%) do not think that a transition policy is needed. Only 105 (56.15%) feel comfortable caring for former pediatric patients. The vast majority do not have a multidisciplinary team to integrate new young adults into their practice [175 (90.7%)]; 165 (86.8%) do not have a designated staff responsible for coordinating the integration. For 153 (80.1%), the patient is referred by a pediatric rheumatologist, or adult primary care [111; (58.1%)] for 106 (55.5%), the patient is self-referred. The median age of transition is 18-20 years. Time from last pediatric rheumatology visit to first adult rheumatology visit is 3-6 months in 70 (40.7%) and between 6-12 months in 67 (38.9%). The physicians were dysatisfied with the following data received: previous treatments 85 (48.9%), hospitalization history 83 (48%), disease activity index 78 (45.1%), medical history summary 76 (43.9%), co-morbidities 63 (36.4%), medication list 59 (34.1%) and disease classification 56 (32.6%). Only a minority were satisfied with the current integration process [12 (7.14%)], have sufficient resources and personnel [15 (8.93%)] and time in clinic [22 (13.1%)]. The 3 major barriers to the integration process are lack of insurance reimbursement [57 (33.9%)], lack of knowledge about community resources to support patients [52 (31.3%)] and lapse in care between primary provider and specialist [47 (28%)]. The vast majority need tools to facilitate transition 133 (79.6%) and desire a specific rheumatology consensus statement with guidelines for transitioning adolescent rheumatology patients to adult-centered care 141 (83.9%). No significant differences were noted between practitioners in university clinics vs private practice or between those practicing for less or more than 15 years.

Conclusion: This survey of rheumatologists caring for adults demonstrated substantial gaps in knowledge and resources regarding transition from pediatric to adult care for young adults with rheumatic diseases. Practice guidelines may be an effective way to address these gaps.

Disclosure: D. Zisman, None; P. White, None; P. Chira, None; S. P. Ardoin, None; E. F. Lawson, None; E. von Scheven, None; I. Lavi, None; L. Tarter, None; E. D. Mellins, Novartis, Glaxo-Smith-Kline, 2,Ascendent, Codexis, 5.

To cite this abstract in AMA style:

Zisman D, White P, Chira P, Ardoin SP, Lawson EF, von Scheven E, Lavi I, Tarter L, Mellins ED. US Adult Rheumatologists Perspective on the Transition Process for Young Adults with Rheumatic Conditions [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/us-adult-rheumatologists-perspective-on-the-transition-process-for-young-adults-with-rheumatic-conditions/. Accessed .

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