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Crossing the Bridge: Transi1on Challenges in JDM Erica Lawson, MD Assistant Professor UCSF Pediatric Rheumatology
Crossing the Bridge: Transi1on Challenges in JDM
Erica Lawson, MD Assistant Professor
UCSF Pediatric Rheumatology
Overview • What is transi1on? • Long-‐term outcomes: Establishing the need for effec1ve transi1on in JDM
• Transi1on in Rheumatology: How are we doing?
• Provider, health care system and pa1ent factors affec1ng transi1on
• Transi1on improvement programs • Defining transi1on success: Outcomes measurement
What is Transi1on?
“The purposeful, planned movement of adolescents and young adults with chronic physical and medical condi9ons from child-‐
centered to adult-‐oriented health-‐care systems.”
-‐ Blum, 1993
Transi1on in JDM: Is it important?
• Do JDM pa1ents need ongoing care into adulthood?
• What is the risk of ongoing disease ac1vity? • What is the risk of ongoing disease-‐related damage?
Long-‐term outcomes in JDM Before 1960: • 1/3 died of disease-‐related
causes • 1/3 severely disabled • 1/3 recovered without
severe disability
2014: • Mortality <2% • Ongoing disease ac1vity • Calcifica1ons • Contractures
Long-‐term outcomes in JDM
• Huber et al., 2001 – Mul1-‐center Canadian incep1on cohort – Chart review and pa1ent interview – 65/80 pa1ents contacted at median 7.2 years a^er diagnosis (range 3 to 14)
– Median age at diagnosis 5.8 years (range 1 to 16)
Long-‐term outcomes in JDM
• Huber et al., 2001 – Ongoing disease ac1vity common
• 40% rash • 10% reported weakness • 22% reported pain • 35% remained on medica1on
– One death – No par1cipants indicated that JDM interfered with school or work at 1me of f/u
• Huber et al., 2001
Long-‐term outcomes in JDM
None 72%
Mild 20%
Moderate to severe
8%
Disability according to Childhood Health Assessment Ques1onnaire (N=65)
Long-‐term outcomes in JDM
• Sanner, 2009: – Cross-‐sec1onal study of pa1ents with JDM in Norway – Data obtained from physical exam and chart review – Disease ac1vity score (DAS), Myosi1s damage index (MDI), CHAQ/HAQ
– 60/67 iden1fied pa1ents par1cipated • 4 died • 3 declined
– Median f/u 1me 16.8 years (range 2 to 38 years) – 65% age ≥ 18 years at f/u
Long-‐term outcomes in JDM
• Sanner, 2009: – 90% had disease-‐related damage (MDI < 1) – 61% had ac1ve disease with DAS ≥ 3 (range 0-‐20) – Increase in damage (MDI) seen between 1 year post-‐diagnosis and study visit (P<0.001)
– Total follow up 1me correlated with damage – 36% reported some disability (HAQ > 0)
• Sanner, 2009 – Other autoimmune diseases in 15% (N=9)
• Hypothyroidism (N=3) • Psoriasis (N=3) • Celiac disease (N=2) • Hyperparathyroidism (N=1) • Derma11s herpe1formis (N=1) • Uvei1s (N=1)
Long-‐term outcomes in JDM
• Sanner, 2010 – Case control study based on same cohort – Sex-‐ and age-‐matched healthy controls – Study assessed:
• Muscle strength and endurance (Childhood Myosi1s Assessment Scale and manual muscle tes1ng) • ESR and muscle enzymes (CK, LDH, AST, ALT) • Disease ac1vity (DAS) and damage (MDI) • Disability (CHAQ/HAQ) • MRI of thigh muscles (cases only)
Long-‐term outcomes in JDM
• Sanner, 2010 – Muscle weakness common
• MMT: 42% of cases vs. 2% of controls • CMAS: 35% of cases vs. 5% of controls
– No difference in muscle enzymes or ESR – 29% of pa1ents s1ll receiving immunosuppression – Damage and inflamma1on seen on MRI
• Damage in 52% • Inflamma1on in 9%
– Significant correla1on between weakness and disability (CMAS/HAQ)
Long-‐term outcomes in JDM
Do JDM pa1ents need adult care?
• For most pa1ents… YES – Ongoing disease ac1vity – Con1nue to accrue disease damage – Con1nuing need for immunosuppression – Risk of addi1onal autoimmune processes
Transi1on in Rheumatology: How are we doing?
• Scal, 2009: – Data from Na1onal Survey of Children with Special Health Care Needs
– Only 50% of teens with JIA reported discussing transi1on-‐related issues with their doctor
– 23% had discussed insurance coverage – 19% had discussed transfer to adult provider
Factors Affec1ng Transi1on
1. Health systems-‐level – Access to adult providers – Maintain health insurance coverage
2. Physician-‐level – Communica1on between new and old providers
3. Pa1ent-‐level – Decreasing parental oversight – Increasing self-‐management expecta1ons – Amtude towards disease, medica1ons
Transi1on in Rheumatology: Pediatric provider perspec1ves
• Chira, 2014: – Email survey to assess transi1onal prac1ces – 158 U.S. and Canadian pediatric rheumatologists at 74 sites
– 1/3 of respondents had access to a structured transi1on program (Canada > U.S.)
– 1/2 reported having a wrinen transi1on policy, or using an informal but consistent approach
– 83% desired rheumatology-‐specific transi1on guidelines
Transi1on in Rheumatology: Pediatric provider perspec1ves
• Chira, 2014: – Barriers to transi1on:
• Inadequate training • Lack of 1me or resources • No reimbursement for 1me spent
Transi1on in Rheumatology: Adult provider perspec1ves
• Lawson, unpublished – Qualita1ve data from interviews with adult providers
– Key transi1on-‐readiness components: • Appropriate age • Stable disease • Appropriate communica1on between pediatric and adult providers • Self-‐care competence
Lawson, unpublished
Health-‐systems factors: Understanding insurance at transi1on • Title V of the Social Security Act of 1935 – Children with Special Health Care Needs Program – Provides Federal support but administered by states
• Title V programs may have more generous financial eligibility requirements than Medicaid
• Pa1ents covered under public programs may lose coverage between age 18-‐21
But what about Obamacare?
• Private insurance companies are now REQUIRED to allow young adults to remain on parents’ insurance un1l age 26
• But… does not apply to young adults whose parents are uninsured or insured via Medicaid
• Many young adults are now eligible to purchase coverage on the health insurance exchanges
Understanding Teenagers
Transfer from pediatric to adult rheumatology care is one of MANY
simultaneous transi1ons
• High school to college or work • Parents’ home to independent living • Roman1c rela1onships • Insurance coverage • New primary care physician • May move to new part of the state or country
• Informa1on/knowledge • Help with self-‐management strategies – Meaningful interac1on with care providers – Managing pain – Managing emo1ons
• Social support from peers
How do we support our pa1ents during transi1on?
• How should we prepare pa1ents for transi1on?
• What do providers need to know and do? • How do you know when pa1ents are ready to transi1on?
• What is the responsibility of the pa1ent, parent, pediatric provider, adult provider, ins1tu1ons?
Formal Transi1on Programs
• Increasing focus on providing coordinated services to facilitate transi1on – Government – Health care ins1tu1ons – Disease-‐specific organiza1ons
• Center for Healthcare Transi1on Improvement (www.gonransi1on.org) – Six Core Elements of Health Care Transi1on – Resources for providers, youth and families – Sample documents (i.e. transi1on policies)
Six Core Elements of Health Care Transi1on
1. Development of transi1on policies 2. Crea1on of transi1oning and young adult pa1ent
registries to monitor progress and outcomes 3. Transi1on prepara1on, including iden1fica1on of
gaps in transi1on readiness 4. Transi1on planning, including iden1fica1on of adult
providers and a Transi1on Ac1on Plan 5. Transfer of care, including communica1on between
providers 6. Transi1on comple1on
Arthri1s Founda1on Pediatric Transi1ons Program
• Designed to address the needs of adolescent pa1ents and families who will transi1on to adult rheumatology care.
• Pilot program in the Bay Area, with na1onwide implementa1on underway.
The Arthri1s Founda1on Pediatric Transi1ons Program
1. Provide young pa1ents with the educa1on and tools they need to successfully transi1on to adult health care.
2. Prepare pediatric and adult rheumatologists to assist their pa1ents with transi1on.
3. Create social interac1ons to facilitate the sharing of young pa1ents’ experiences and provide emo1onal support.
Outcomes That Maner: Defining Transi1on Success
• What is “successful” transi1on? • Pa1ent measures: – Medica1on adherence – Disease control – Pa1ent/family sa1sfac1on
• Systems measures: – Transfer to adult provider without gaps in care – Decreased health care costs
IntervenCon Outcome Transi1on prepara1on for young adults with DM 1 (Holmes-‐Walker, 2007)
Improved diabetes control Decreased hospital admissions
Transi1on curriculum in pediatric and adult cys1c fibrosis clinic (Okumura, 2014)
Improved transi1on readiness scores Decreased in-‐hospital transfers to adult care
“Holis1c” transi1onal care for teens with chronic condi1ons, addressing medical, social and voca1onal issues (Shaw, 2013)
Increased pa1ent sa1sfac1on
Do Transi1on Interven1ons Work?
Transi1on in JDM: The take-‐home
• Many pa1ents with JDM will have ongoing disease into adulthood
• Not all pa1ents are prepared for the transi1on to adulthood and adult rheumatology care
• Transi1on is affected by health-‐system, pa1ent-‐level and physician-‐level factors
• Transi1on prepara1on may improve pa1ent and systems outcomes
• Resources are available to help you successfully transi1on your pa1ents
Thank you
