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

CAPRICenter for Adults with Pediatric Rheumatic Illness

Managing transition: CAPRI

• Center for Adults with Pediatric Rheumatic Illness at 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

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

Clinical niche #1 TransitionSpecial 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!

http://www.rheumtext.com/content/0323024041/suppfiles/chapters/Chapter85.pdf

Age: 14 years

Dr. P. White

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Dr. P. Whitehttp://www.rheumtext.com/content/0323024041/suppfiles/chapters/Chapter85.pdf

Clinical niche #1 TransitionChallenges 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

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

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

CAPRI: clinic practice model

Referral from

pedi rheum

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

Follow-up

Initial meetingat Children’sHospital

RN watch for “falling through the cracks”

RN monitor compliance

Specialprograms

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

CAPRI: specialist providers

Orthopedics:General: Dick ScottSpine: Mitch HarrisFoot: Chris Chiodo

Anesthesia: Mercedes ConcepcionAnne Schools

Ophthalmology: George Papaliodis

Nephrology: Ajay Singh

Cardiology: Mike Singh (BACH)

ENT: Nalton FerraroNeil Bhattacharyya

Rheumatology in pregnancy: Bonnie Bermas

OB/GYN: Kathy Economy

Neurology: Shah Khoshbin

Pulmonary: Manuela Cerñadas

Physiatry: ???

Psychiatry/psychology: ???

Primary Care: ???

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

Summary

CAPRI: 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?