Rheum to Grow: Pediatric Rheumatology for the Adult Rheumatologist - PowerPoint Presentation

1. Rheum to Grow: Pediatric Rheumatology for the Adult RheumatologistAnn Marie Szymanski, MDJohns Hopkins All Children’s HospitalFAAP, FACR

2. AgendaAdult and Pediatric Rheumatology WorkforceJuvenile Idiopathic ArthritisChildhood-Onset Systemic Lupus ErythematosusTransition Arthritis Foundation

3. Adult Rheumatology Workforce ShortageBy 2040, the number of United States (U.S.) adults diagnosed with arthritis is projected to increase by 49%, to 78.4 millionRheumatic disease prevalence increasing due to the aging population with an increased life expectancyAdvances in science and drug development continues to improve outcomesBy 2030 adult rheumatology providers will decline by 25%, in terms of full time equivalents (FTEs); demand will exceeding supply by 102%

4. Adult Rheumatology Workforce ShortageLuckily, the number of rheumatologists in training is steadily increasing, with an increase in unmatched candidates There is a push to increase fellowship spots; needs more fundingNeed to increase rheumatology exposure during medical school and residencyTelemedicine helping with remote care

5. Pediatric Rheumatology Workforce ShortageThere are about 300 pediatric rheumatologists in the U.S.Projections anticipate a 15% decrease in pediatric rheumatologists by 2030 Demand for pediatric rheumatologists currently exceeds supply by 33%Population of children thought to increase 3% between 2015-2030Projected that by 2030 the demand for pediatric rheumatology will be twice the supply25-50% of fellowship positions go unfilled each year

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7. Pediatric Rheumatology Distribution Rate per 100,000 children, 2015 2030

8. Many Differences ExistVariations exist in: PresentationComplications Differential Diagnoses to considerMedication side effectsGrowthPsychosocial issues

9. Special Differences in Juvenile Idiopathic Arthritis (JIA) JIA is not JRAIt is not a pediatric version of RA (mostly)Subcategories exist: oligoarticular; oligo-extended; oligo- persistent; RF – polyarticular; RF + polyarticular; psoriatic arthritis; enthesitis-related arthritis; systemic; unclassifiable/ undifferentiated Be on the lookout for new classification too, call for precision medicineLab tests are generally unhelpful; 5% are RF positive; CCP rarely found; frequently positive ANAXrays can show advanced disease MRI can show cartilage damage before ossification centers allow for visualization on xray

10. JIA ComplicationsUveitis, affects 10-20% of those with JIA Most commonly found in oligoarticular JIAFemale: male, 2:1Duration of arthritis < 4 yearsYounger than 6 years of agePositive ANA Insidious, asymptomatic Bilateral in 70%

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12. JIA ComplicationsGrowth delay and short stature may arise from chronic diseaseBrachydactylyMicrognathiaNutrition problems GI symptoms, TMJ arthritisAccelerated maturation of growth centers in affected joint; closure of physis may occurLeg length discrepancy

13. Further ChallengesIf oral, mindful of liquid preparationsInvestigate if tablets can be crushed and mixedMethotrexate liquid can be given orallyCautious with steroids, impacts linear growthNuances of treatment based on subtype2019: ACR guidelines for the treatment of polyarthritis, saroiliitis, enthesitis, and uveitis2021: oligoarthritis, TMJ arthritis, and sJIA 30% do not achieve remission on currently available regimens

14. Further Challenges ContinuedCompared with adults with chronic inflammatory arthritis, there are far less children with JIA less infrastructure to conduct clinical trialsExtrapolation from adult studies often is necessaryEven fewer physician scientists in pediatric rheumatologyTreatment with DMARDs and biologics is similar to adults Those patients who don’t fit the mold, consider immunology and genetics referrals

15. Systemic Lupus Erythematosus (SLE) 20% of SLE patients are diagnosed or present with symptoms during childhood2019 ACR SLE diagnostic criteria are also applied in pediatrics More severe disease phenotypeMore common to exhibit: cutaneous disease, hematologic abnormalities, lupus nephritis, neuropsychiatric manifestationsLupus nephritis prevalence 50-70%80-90% develop within 1 year of diagnosisRequire high-dose steroids more often than adults (82% vs. 40%)

16. Special Considerations in Adolescents Most common pediatric period in which to develop SLESLE has impacts on patient identity and physical appearanceDiagnosis of incurable, chronic dsease at a fragile period of psychodevelopment Aspects of disease: alopecia, cutaneous changes, photosensitivity, cognitive dysfunction (504 and IEP)Aspects of treatment: hirsutism, Cushingoid appearance, striae, weight gain, acne, infertilityNon-adherence is an ongoing issueSecondary mental health effects

17. Further ChallengesEarlier disease onset means there is more time to accrue damage from disease activity and medication side effectFailure to achieve adolescent peak bone mass leads to osteoporosis later in life 50 fold increase in risk of myocardial infarction in 3rd and 4th decades of lifeImpairment in school performance and learning 504 plan and IEP, communication with school

18. TransitionTransition should be an organized process where young adults transfer care2016 National Survey for Children’s Health showed that 83% of youth with special health care needs did not receive adequate supportTransition tends to be a time of increased disease activityUp to half of young patients do not successfully transition to adult care

19. Transition (cont.) Roadblocks to transition include: Low familiarity with the transition process Lack of clinical training on successful transition processesDecreased time to evaluate complicated patientsLack of personnel to carefully coordinate transition Difficulties with medical record sharing Insufficient communication between pediatric and adult providers

20. Transition (cont.)2011 AAP, AAFP, ACP developed a Health Care Transition approachGot Transition is federally funded national resource center on healthcare transition: https://www.gottransition.org/Six core elements of Health Care Transition have been shown to improve transition in primary, subspeciality, and Medicaid managed careProcess must be individualized for each patient

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22. Transition (cont.)ACR developed a specialty specific toolkit to help pediatric and adult rheumatologists transition their patients Teens and young adults are still learning to care for themselvesACR Transition Work Group Recommendations: Each practice have their own transition policyReadiness assessment completion Adult practices provide a welcome letterhttps://www.rheumatology.org/Practice-Quality/Pediatric-to-Adult-Rheumatology-Care-Transition

23. Transition (cont.)HCT planning should include a portable medical summary and emergency care plan 12 years: transition planning, 18-21 years: transfer to adult providerOptimal age should be individualized Important to obtain consent to involve caregivers in care once they are an adultLIST OF PROVIDERS INTERSTED IN CARING FOR YOUNG ADULTS

24. Transition (cont.)Providing support for and emphasizing the role of the adult provider have been shown to be key indicators of successful transition Lower educational level (less than a high school degree) a/w increased missed appointments at risk populationEvidence suggests a structured transition program improves outcomesImproved HRQL, knowledge, satisfaction, and vocational readiness

25. Transition (cont.)To improve employment outcomes, patients need help disclosing their disease and its impact to employersProvider directed guidance can help, vocational readiness counseling

26. The Mission of the Arthritis Foundation could not be any more straightforward and purposeful – Boldly pursue a cure for America’s #1 cause of disability, while championing the fight against arthritis with life-changing resources, science, advocacy and community connections.

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29. National JA InitiativesJA Power Pack – child and teenJA TransitionsJA Conference KidsGetArthritisToo.org websiteChildhood Arthritis and Rheumatology Research Alliance (CARRA) PartnershipJA Camp ProgramsAdvocacy & Access

30. Our Pathways(Adult & JA)CureResearch & Scientific InitiativesRheumatology Workforce DevelopmentImproved Quality of LifeIdeal Model of CareDisease & Pain Management ProgrammingPathwaysOur 3-Year Plan

31. Partners 4 Patients with Arthritis (P4P)Build stronger relationships and increase recognition of engaged health care providers and groupsArthritis Foundation provides up-to-date resources, material, and events for patients free of charge  In return, P4P providers commit to distributing Arthritis Foundation materials and to referring patients to the Arthritis Foundation for connections and supportP4P providers also encouraged to participate in events

32. VolunteerRefer your patientsConnect your patients to our servicesBecome an advocate for the Arthritis Foundation!We need you!

33. December 2022JBR.org

34. Champion of Yes.

35. References Eli M. Miloslavsky et al.Addressing the rheumatology workforce shortage: a multifaceted approach. Seminars in arthritis and rheumatism. (2020)Melissa Argraves, Jay J. Mehta, Pediatric rheumatology: Not just a little adult workforce issue, Seminars in Arthritis and Rheumatism, Volume 51, Issue 5, 2021, Page e13, https://www.sciencedirect.com/science/article/pii/S0049017220302882Correll CK, Ditmyer MM, Mehta J, et al. 2015 American College of Rheumatology Workforce Study and Demand Projections of Pediatric Rheumatology Workforce, 2015-2030. Published online October 27, 2020. Arthritis Care Res (Hoboken). doi:10.1002/acr.24497Foster, CS, Mitchel, E. Curbside Consultation in Uveitis: 49 Clinical Questions. Thorofare, SLACK inc. 2012. p. 67Wagner-Weiner, Linda MD. Pediatric Rheumatology for the Adult Rheumatologist. JCR: Journal of Clinical Rheumatology: April 2008 - Volume 14 - Issue 2 - p 109-119 doi: 10.1097/RHU.0b013e31816b4460Jiménez, S., Cervera, R., Font, J. et al. The epidemiology of systemic lupus erythematosus. Clinic Rev Allerg Immunol 25, 3–11 (2003). https://doi.org/10.1385/CRIAI:25:1:3Ruiz-Irastorza G, Ramos-Casals M, Brito-Zeron P, Kham-ashta MA (2010) Clinical efficacy and side effects of anti-malarials in systemic lupus erythematosus: a systematicreview.Ann Rheum Dis69(1), 20–8Aggarwal, A. and Srivastava, P. (2015), Childhood onset systemic lupus erythematosus: how is it different from adult SLE?. Int J Rheum Dis, 18: 182-191. https://doi.org/10.1111/1756-185X.12419Perez MD, Abrams SA, Loddeke L, Shypailo R, Ellis KJ(2000) Effects of rheumatic disease and corticosteroidtreatment on calcium metabolism and bone density inchildren assessed one year after diagnosis, using stable iso-topes and dual energy x-ray absorptiometry.J RheumatolSuppl58,38–43R.E. Petty, C.B. Lindsley, R.M. Laxer, L. Wedderburn (Eds.), Cassidy’s textbook of pediatric rheumatology (7th ed.), Elsevier, Philadelphia (PA) (2016)

36. ReferencesShoop-Worrall SJW, Kearsley-Fleet L, Thomson W, Verstappen SMM, Hyrich KL. How common is remission in juvenile idiopathic arthritis: A systematic review. Semin Arthritis Rheum. 2017 Dec;47(3):331-337. doi: 10.1016/j.semarthrit.2017.05.007. Epub 2017 May 20. PMID: 28625712; PMCID: PMC5687936.Sabbagh S, Ronis T, White PH. Pediatric rheumatology: addressing the transition to adult-orientated health care. Open Access Rheumatol. 2018;10:83-95 https://doi.org/10.2147/OARRR.S138370U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. Frequently asked questions: 2016 National Survey of Children’s Health. Available from: https://mchb.hrsa.gov/data/national-surveys/data-user. Accessed May 2, 2018.