Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement

Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.


Survey of Teen Transition Needs among Pediatric Rheumatologists in the United States and Canada: Barriers, Services and Opportunities.

Ronis3,  Tova, Ardoin2,  Stacy P., White1,  Patience H., Chira3,  Peter

Arthritis Foundation, Bethesda, MD
Ohio State University, Columbus, OH
Stanford University, Palo Alto, CA

Purpose:

To assess teen transition needs, barriers and opportunities among pediatric rheumatology providers

Methods:

Using surveymonkey, we queried all Childhood Arthritis and Rheumatology Research Alliance (CARRA) members about teen transition care including needs, barriers and opportunities for transition program development. We compared our results to the American Academy of Pediatrics (AAP) 2008 survey on transitional care.

Results:

158/291 (54%) providers responded. Top two major stated barriers to transition are fragmented adult medical care and lack of sufficient time to provide services (Table 1).

Table 1. Barriers Affecting the Provision of Transition Support Services in Pediatric Rheumatology Practices

BarriersMajor BarrierSomewhat a barrier
Pediatric staff lack sufficient time to provide transition services40.3%42.4%
Fragmentation of primary and specialty care in adult care39.2%44.8%
Adolescents/parents/physicians have developed an effective bond that is hard to break32.6%59.7%
Adolescents' lack of knowledge about their own condition and/or skills to self-advocate at physician visits31.3%61.8%
Pediatric staff lack skills in transition planning28.7%51.7%
Lack of knowledge about or linkages to community resources that support older adolescents/young adults27.0%61.0%
Lack of available adult specialists to care for older adolescents/young adults with special needs26.4%47.9%
Lack of insurance reimbursement for transition services25.4%38.7%
Lack of available family physicians and internal medicine physicians to care for older adolescents/young adults with special needs24.5%44.8%

As a part of routine transition care services, respondents help with finding an adult rheumatologist (70%), discuss confidentiality and consent before 18 (49%), assist with medical summary (51%), provide educational packets (42%), create an individualized transition plan (21%), utilize an assessment of transition readiness (30%), and 2/3 discuss patient's educational and vocational plans. Compared with AAP survey participants, pediatric rheumatologists are similar or more proficient in many transition practices, except for creating a medical summary and referring to a primary care provider.

Useful resources for the transition process include brochures and pamphlets (91%); open ended discussions during visits (91%); and having a portable personal health/medical record (82%). 78% use open ended discussions already, but use of phone calls (56%) and emails (43%) directly with teens is less frequent. Providers do not want to communicate via texting (58%) or social networking (49%).

Outcomes ranked as very important in defining a successful transition are survival (76%), seeing an adult rheumatologist within 6 months of the final pediatric rheumatology visit (66%), and maintaining insurance coverage (57%).

Discussion:

Pediatric rheumatologists report many barriers to transition care, revealing unmet needs in improving teen self-efficacy, and assuring adequate provider time, education and reimbursement for transition planning. Technology offers some potential solutions including portable personal health records and health information access via hospital/health insurance portals. From the provider perspective, assessment of long term transition outcome is focused on quantitative measures rather than qualitative items as provider/patient satisfaction or patient quality of life.

Conclusion:

Pediatric rheumatologists report the same concerns about providing transition care as general pediatricians. Opportunities include creating a standardized transition protocol to be followed by CARRA members, incorporating technology to facilitate the process such as developing personal health records, educational programs, and tracking long term outcomes after transfer of care.

To cite this abstract, please use the following information:
Ronis, Tova, Ardoin, Stacy P., White, Patience H., Chira, Peter; Survey of Teen Transition Needs among Pediatric Rheumatologists in the United States and Canada: Barriers, Services and Opportunities. [abstract]. Arthritis Rheum 2010;62 Suppl 10 :1008
DOI: 10.1002/art.28775

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