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CAPRI C enter for A dults with P ediatric R heumatic I llness

CAPRI C enter for A dults with P ediatric R heumatic I llness. Peter A. Nigrovic, M.D. Assistant Professor of Medicine Harvard Medical School Division of Immunology Children’s Hospital Boston Director, Center for Adults with Pediatric Rheumatic Illness (CAPRI)

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CAPRI C enter for A dults with P ediatric R heumatic I llness

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  1. CAPRICenter for Adults with Pediatric Rheumatic Illness Peter A. Nigrovic, M.D. Assistant Professor of Medicine Harvard Medical School Division of Immunology Children’s Hospital Boston Director, Center for Adults with Pediatric Rheumatic Illness (CAPRI) Division of Rheumatology, Immunology and Allergy Brigham and Women’s Hospital April 27, 2012

  2. Managing transition: CAPRI • Center for Adults with Pediatric Rheumatic Illnessat the Brigham and Women’s Hospital(January 2005) • Goals • Smooth the transition from pediatric to adult rheumatology (mostly from Children’s Hospital) • Primary/second-opinion consultation for young adults • Long-term care of adults with JIA and other rheumatologic conditions • Training of adult and pediatric rheum fellows

  3. Clinical niche #1 Transition Pedi rheumatology patients need to transition • Diseases often persist into adulthood • JIA: 50% • SLE, scleroderma: 80-100% • Dermatomyositis, vasculitis : ? 20-40% • 12/03-11/04: 107 pts >18yo followed at CHB rheum • from elsewhere • college students from out of town • young professionals

  4. Clinical niche #1 Transition Special issues affecting our patients • Medical • Growth disturbance (global and regional) • Uveitis in JIA • Calcinosis in juvenile dermatomyositis • Osteoporosis • Long-term effects of immunosuppression • Functional • Autonomy • Anxiety/depression • Vocational goals • Unknowns!

  5. Age: 14 years Dr. P. White http://www.rheumtext.com/content/0323024041/suppfiles/chapters/Chapter85.pdf

  6. Dr. P. White http://www.rheumtext.com/content/0323024041/suppfiles/chapters/Chapter85.pdf e-bility.com/articles/ images/ben.jpg

  7. Clinical niche #1 Transition Challenges in transition • Making it to the first visit • new system • long time to first new appointment • anxiety/wishful thinking • Pedi  adult culture shock • Establishing new network of providers (esp. PCP) • Insurance • Medical records • Vocational challenges

  8. Clinical niche #2 Consultation for specialized topics • Pediatric-onset illnesses • Autoinflammatory diseases/periodic fever syndromes • Adult onset Still’s disease • Second opinions within BWH • Patients who have rejected Children’s

  9. Additional niche: education • Fellows • High density of complex cases • “Hands-on” teaching style • Continuity of care with 1 attending • Rheumatology staff • Educate adult providers re: pediatric diseases • External: grand rounds, case conferences, CME

  10. Initial meeting at Children’s Hospital CAPRI: clinic practice model • Initial CAPRI visit • nurse evaluation • - vaccination status • MD evaluation • - disease activity • - medication review • - specialist referrals • - bone health • - reproductive health • ? PT/OT referral • ? social work referral Referral from pedi rheum Follow-up RN monitor compliance Special programs RN watch for “falling through the cracks”

  11. CAPRI: clinic staff • Rheumatologists: P. Nigrovic (director) • Fellows: Derrick Todd (now CAPRI staff), J. Ermann, R. Ishiziwar, L. Gedmintas • 2 sessions per month, 12-15 patients including 4-5 new patients • Nurse coordinator: Fran Griffin • “point person” for patient contacts • initial intake for new patients (establish rapport) • obtain medical records, chase down no-shows, medication teaching, care coordination, support for patients/families • Social worker: <variable!> • insurance and social issues, care coordination, counseling including vocational counseling • PT/OT coordinator: Janice McInnes • Specialist referral providers – small network for improved communication

  12. Orthopedics: General: Dick Scott Spine: Mitch Harris Foot: Chris Chiodo Anesthesia: Mercedes Concepcion Anne Schools Ophthalmology: George Papaliodis Nephrology: Ajay Singh Cardiology: Mike Singh (BACH) ENT: Nalton Ferraro Neil Bhattacharyya Rheumatology in pregnancy: Bonnie Bermas OB/GYN: Kathy Economy Neurology: Shah Khoshbin Pulmonary: Manuela Cerñadas Physiatry: ??? Psychiatry/psychology: ??? Primary Care: ??? CAPRI: specialist providers

  13. CAPRI: progress so far • 1/3/05-4/27/12: 273 new referrals • Typical age 18-23 – range 10-60s • mostly Children’s referrals, a few outside docs from around New England (MA, NH, VT, NY, RI) and elsewhere (Puerto Rico, Bermuda, ID, TX, VA) • Handful of internal second opinions • Very interesting patient population! • 4 Fellows • 1 publication • Talks • 10-15 internal case conferences • 6 grand rounds (BWH PT, BU, BIDMC, Children’s, MGH) • 5 CME lectures

  14. SummaryCAPRI: Center for Adults with Pediatric Rheumatic Illness • Ad hoc model built to fit a particular set of circumstances and personnel • Occupies unique clinical and educational “niches” • Would benefit from more structured transition work at Children’s – but in most cases transition is uneventful • How to study? How to improve?

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