IMPLEMENTATION AND EVALUATION OF TRANSITION QUALITY IMPROVEMENTS IN PEDIATRIC AND ADULT SETTINGS

1. IMPLEMENTATION AND EVALUATION OF TRANSITION QUALITY IMPROVEMENTS IN PEDIATRIC AND ADULT SETTINGS CENTER FOR HEALTH CARE TRANSITION IMPROVEMENT Peggy McManus, MHS Got Transition/Center for Health Care Transition Improvement The National Alliance to Advance Adolescent Health Greenville Health System Transitional Care Conference May 15, 2015

2. Disclosures • I have no commercial relationships to disclose.

3. Presentation Learning Objectives • Understand latest developments in clinical and measurement tools for transition from pediatric to adult health care. • Review examples of QI strategies to incorporate transition core elements into 3 types of practices/systems: academic primary care settings, academic subspecialty clinics, and a Medicaid managed care plan. • Identify innovative payment strategies for transition. • Learn about new health care transition resources for youth and families.

4. Transition Goals • To improve the ability of youth and young adults to manage their own health and effectively use health services • To ensure an organized clinical process in pediatric and adult practices to facilitate transition preparation, transfer of care, and integration into adult-centered care

5. Got Transition/Center for Health Care Transition Improvement • Funded by federal Maternal and Child Health Bureau to: 1. Spread transition quality improvements 2. Provide education/training to health professionals 3. Expand youth/young adult and family engagement 4. Improve transition policy 5. Serve as a clearinghouse (www.GotTransition.org)

6. Making the Case for Transition Improvements Health is diminished: • Youth often unable to name their health condition, relevant medical history, prescriptions, insurance source • Adherence to care is lower and medical complications are increased • Youth and families are worried Quality is compromised: • Youth, young adults, and families are dissatisfied about lack of preparation, information about adult care, vetted adult providers, communication between pediatric and adult providers, and sharing of medical information. • Discontinuity of care and lack of usual source of care are common Costs are increased: • Increased ER, hospital use, and duplicative tests result

7. US and SC Transition Performance • National data – from 2009/10 – show that 60% of YSHCN are not receiving needed transition support: • Health care providers (HCP) discussed shift to adult provider • HCP encouraging youth to take responsibility for own health care needs • HCP discussed changing health needs as youth becomes adult • Discussed future insurance needs • SC – show that 59% are not receiving needed support – similar to US • However, these national findings overstate transition performance -- if perceived need was removed from the transition question, results would show that 90% of YSHCN are not receiving transition support.

8. TRANSITION Fervor

9. State of Health Care Transition from Pediatric to Adult Health Care

10. AAP/AAFP/ACP Clinical Reporton Health Care Transition* Age 12 • In 2011, Clinical Report on Transition published as joint policy by AAP/AAFP/ACP • Targets all youth, beginningat age 12 • Algorithmic structure with: • Branching for youth with special health care needs • Application to primary and specialty practices • Extends through transfer of care to adult medical home and adult specialists Youth and family aware of transition policy Age 14 Health care transition planning initiated Preparation of youth and parents for adult approach to care and discussion of preferences and timing for transfer to adult health care Age 16 Age 18 Transition to adult approach to care Age 18-22 Transfer of care to adult medical home and specialists with transfer package • *Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home(Pediatrics, July 2011)

11. Six Core Elements of Health Care Transition: QI Model • Original Six Core Elements (1.0), developed in 2011, as QI strategy based on AAP/AAFP/ACP Clinical Report algorithm with set of sample tools and transition index • New Six Core Elements (2.0), developed in 2014, incorporate results from several transition learning collaboratives, reviews by over 100 pediatric/adult clinical experts and consumers, and extensive review of literature

12. Six Core Elements of Transition 1 2 3 4 5 6 Transition Policy Transition Tracking and Monitoring Transition Readiness Transition Planning Transfer of Care Transition Comple- tion

13. Six Core Elements 2.0 (See Side-by-Side Handout)

14. Transitioning Youth to Adult Health Care Providers: A Closer Look • For use in pediatric practices and family medicine and med-peds caring for teens who will be leaving their practice • Other 2 packages follow 6 core elements, but are modified for: youth not changing their provider and for young adults going into adult health care • Keep in mind that these can be customized with your own practice or health plan logo

16. Element 1. Transition Policy • Make larger

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27. Sample transfer letter provided to adult provider with • Appropriate documentation (readiness assessment, medical summary and emergency care plan, plan of care and decision support documents and condition fact sheet, if needed) • Statement that the youth’s care is covered by pediatric practice until first visit • Offer to be a consultant as needed

30. One Measurement Option Initial Health Care Transition Assessment (Handout) • Qualitative self-assessment tool • Provides a snapshot of where practice is in implementing transition processes • New questions on consumer feedback and leadership

31. Core Element #1: Policy • Level 1: Clinicians vary in their approach to health care transition, including the appropriate age for transfer to adult providers • Level 2: Clinicians follow a uniform but not a written policy about the age for transfer. The approach for transition planning differs among clinicians. • Level 3: The practice has a written transition policy or approach, developed with input from youth and families that includes privacy and consent information and addresses the practice’s transition approach and age of transfer. The policy is not consistently shared with youth and families. • Level 4: The practice has a written transition policy or approach, developed with input from youth and families that includes privacy and consent information, a description of the practice’s approach to transition, and age of transfer. Clinicians discuss it with youth and families beginning at ages 12 to 14. The policy is publicly posted and familiar to all staff.

32. #2: Tracking and Monitoring • Level 1: Clinicians vary in the identification of transitioning youth, but most wait until close to the age of transfer to identify and prepare youth. • Level 2: Clinicians vary in the identification of transitioning youth, but most wait until close to the age of transfer to identify and prepare youth. • Level 3: The practice has an individual transition flow sheet or registry for identifying and tracking transitioning youth, ages 14 and older, or a subgroup of youth with chronic conditions as they progress through and complete some but not all transition processes. • Level 4: The practice has an individual transition flow sheet or registry for identifying and tracking transitioning youth, ages 14 and older, or a subgroup of youth with chronic conditions as they progress through and complete all “Six Core Elements of Health Care Transition 2.0,” using EHR if possible.

33. #3: Readiness • Level 1: Clinicians vary in terms of the age when youth begin to have time alone during preventive visits without the parent/caregiver present. Transition readiness is seldom assessed. • Level 2: Clinicians consistently offer time alone for youth after age 14 during preventive visits without the parent/caregiver present. They usually wait to assess transition readiness/self- care skills close to the time of transfer. • Level 3: The practice consistently offers clinician time alone with youth after age 14 with clinicians during preventive visits, and clinicians discusstransition readiness/self-care skills and changes in adult-centered care beginning at ages 14 to 16, but no formal assessment tool is used. • Level 4: The practice consistently offers clinician time alone with youth after age 14 during preventive visits. Clinicians use a standardized transition readiness assessment tool. Self-care needs and goals are incorporated into the youth’s plan of care beginning at ages 14 to 16.

34. #4: Planning • Level 1: Clinicians vary in addressing health care transition needs and goals. They seldom make available a plan of care (including medical summary and emergency care plan and transition goals and action steps) or a list of adult providers. • Level 2: Clinicians consistently address transition needs and goals as part of the plan of care. They usually provide a list of adult providers close to the time of transfer. • Level 3: The practice partners with youth and families in developing and updating their plan of care with prioritized transition goals and preferences for securing an adult provider. This plan of care is regularly updated and accessible to youth and families. • Level 4: The practice has incorporated transition into its plan of care template for all patients. All clinicians are encouraged to partner with youth and families in developing transition goals and updating and sharing the plan of care. Clinicians address needs for decision-making supports prior to age 18. The practice has a vetted list of adult providers and assists youth in identifying adult providers.

35. #5: Transfer of Care • Level 1: Clinicians usually send medical records to adult providers in response to transitioning patient requests. • Level 2: Clinicians consistently send medical records to adult providers for their transitioning patients. • Level 3: The practice sends a transfer package that includes the plan of care (including the latest transition readiness assessment, transition goals/actions, medical summary and emergency care plan, and, if needed, legal documents, and a condition fact sheet). • Level 4: The practice sends a complete transfer package (including the latest transition readiness assessment, transition goals/actions, medical summary and emergency care plan, and, if needed, legal documents, and a condition fact sheet), and pediatric clinicians communicate with adult clinicians, confirming pediatric provider’s responsibility for care until young adult is seen in the adult practice.

36. #6: Transfer Completion • Level 1: Clinicians have no formal process for follow-up with patients who have transferred to new adult providers. • Level 2: Clinicians encourage patients to let them know whether or not the transfer to new adult provider went smoothly. • Level 3: The pediatric practice communicates with the adult practice confirming completion of transfer/first appointment and offering consultation assistance, if needed. • Level 4: The practice confirms transfer completion, need for consultation assistance, and elicits feedback from patients regarding the transition experience.

37. Second Measurement Option Health Care Transition Process Measurement Tool • Objective scoring method with documentation requirements • Measures implementation of Six Core Elements, consumer feedback and leadership, and dissemination • Intended to be conducted at start of QI initiative as baseline measure and repeated to assess progress

38. Measurement Tool: Policy Example

39. Summary of Latest Developments in Clinical and Measurement Tools • Six Core Elements (2.0)– Side by Side Handout • 3 different packages – for patients leaving pediatric care, staying with their same provider, and entering adult care • Tools can be customized for your practice • Available measurement tools – qualitative and scorable options and a consumer feedback survey

40. What to do? Where to start?

41. STARTING TRANSITION QI/PILOT IN PRIMARY, SPECIALTY, AND MANAGED CARE • Involve pediatric and adult practices, NOT pediatric only • Gain leadership buy-in • Involve parent, youth, and YA consumers • Start as pilot using QI methods • Measure progress • Adapt and spread

42. A Primary Care Example: DC • Five large pediatric and adult academic primary care sites: Children’s National Medical Center’s adolescent clinic, CNMC’s Adams Morgan Clinic (mostly Latino), Georgetown’s adolescent clinic, Howard’s family medicine clinic, and GW’s internal medicine clinic • Teams: lead physician, nurse/social worker care coordinator, and consumer • Transition population: Medicaid-insured youth with special health care needs (all SSI-eligible and majority African American) • 5 one and half day learning sessions plus regular coaching calls and on-site visits over 22 months (Feb. 2011-Dec. 2012) • Use of QI methods/PDSA cycles • Got Transition staff provided coaching

43. Results from DC Transition Learning Collaborative • All pediatric, family medicine, and internal medicine practices created practice-wide policies on transition • A total of 400 youth and young adults included in pediatric transition registries and 128 in adult registries • Transition readiness assessments conducted with patients in their registry: 88% in pediatric sites and 73% in adult sites • Transition plans developed: 29% of youth and 32% of young adults • 50 youth and young adults transferred to adult practices during last 6 months of LC -- with updated medical summary, transition readiness assessment, and a plan of care

44. DC LC Pediatric and Adult Practices HCT Index Data Average total score for each core element

45. Lessons Learned From DC LC • Feasible to implement Six Core Elements with ready made adaptable tools • Involvement of pediatric, family medicine, and adult practices from outset was key • Senior leadership (practice and department) engagement essential • Transition planning in early adolescence is much easier than transition planning at ages 18 and older • Involvement of nursing, social work, and other clinic staff who are part of clinic processes is critical • Engagement of consumers is importantand challenging to maintain • Sustainability requires EHR integration and payment mechanisms- both are currently being actively addressed by Got Transition • A variety of care transfer models evolved depending on the availability of adult subspecialty care for specific pediatric-onset diseases

46. A Subspecialty Transition Example: U. Rochester (NY) • Department of Pediatrics identified transition as a top issue across all subspecialty divisions • Chair appointed “transition task force” to facilitate this process, led by Dr. Brett Robbins • Centered in division of adolescent medicine • Strong representation of combined Med-Peds trained faculty • Key stakeholders identified for committee • Enlisted the support of the Chair of Medicine • Access to division chief meetings in both IM and Peds • Chose 6 core elements as template for QI process

47. Subspecialty Transition • Pediatric and Internal Medicine divisions initially completed a baseline Current Assessment of Health Care Transition Activities • Selected 3 pediatric-medicine subspecialty dyads based on interest and disease process • Endocrine (DM), Hematology (SS) , pulmonary (CF) • All 6 completed a baseline HCT Process Measurement Tool • All 6 selected 1-2 representatives (MD, SW, NP) • Monthly Meetings between ped and im division reps • QI process with many PDSA cycles • Goal of incorporating 6 core elements into process

48. Themes at Start-up • Completing Current Assessment of HCTat start was itself an intervention • Low level of explicit transition policies and transition practices • Peds: not energetic about process • IM: Confused but willing • Neither involving patients and families • Neither “knew what they didn’t know” about the transition process

49. Subspecialty TransitionLessons Learned • Low level of baseline transition work or even awareness among all IM and Peds subspecialties • Most work in QI process done by SW, NP • Peds had many misperceptions of IM • Peds had a very hard time letting go • IM not prepared, but eager to learn • Sometimes hard to find willing IM provider • Need buy-in from chairs and division chiefs • Need lots of IT support, but don’t get lost in the computers • Moderator with credibility in both departments is very helpful • Policies and assessments come far easier than trust and implementation

50. A Medicaid Managed Care Example: DC • Why are health plans interested in pediatric to adult transition? • Ensure continuity of care and improve self-care, particularly among those with chronic conditions • Retain young adults as health plan members • Improve satisfaction among young adults (often among the most dissatisfied health care consumers) • Comply with PCMH certification standards • Reduce unnecessary ED visits/hospitalization