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Medical Home in Pediatrics: The HOW TO Webinar Series brought to you by the National Center for Medical Home Implementation How To Engage Youth in their Health Care Kitty O’Hare, MD, FAAP Teresa Nguyen Justin Thompson February 27, 2013 Disclosures We have no relevant financial relationships with the manufacturers(s) of any commercial products(s) and/or provider of commercial services discussed in this CME activity. I do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation. Webinar Objectives By the end of this webinar, the participant will be able to: Review the importance of empowering all youth in their health care using a strength-based approach Describe promising practices for pediatric providers to empower youth, especially during the process of transition from pediatric to adult care Describe the impact of empowerment on positive health outcomes and successful transition from pediatric to adult care Case Presentation: Maria 20 yo Hispanic female h/o Type 1 diabetes presents to emergency room with sugars out of control. Lost to follow-up since age 18 after she lost health insurance and stopped seeing her pediatrician. She has weight loss and 2 years of amenorrhea. She works part-time, but has difficulty maintaining her job since she rarely “feels well.” Case Presentation: Maria Is there a better way to get Maria out of pediatrics… … and into adult-oriented care? Definition of Transition “The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” -Society for Adolescent Medicine Goals of Transition and Empowerment Transfer of care from child-oriented to adult-oriented services with uninterrupted services Promote autonomy, self-care and self-determination Allow assumption of adult roles and responsibilities when appropriate Maximize life-long functioning and potential Should we be transitioning and empowering everyone? “Adults, including those with childhoodacquired chronic conditions, should receive adult-oriented primary health care from appropriately trained and certified providers, in adult health care settings.” -Society for Adolescent Medicine Why not stay with the pediatric provider? Expertise in adult medical care Long-term effects of childhood diseases Promote independence and autonomy The population of adults with complex pediatric conditions continues to grow! There are many barriers System Providers Communication 70% Did your physician discuss with you – 60% 50% 53% 62% 55% 40% 30% 34 24% 20% 10% 0% How health needs may change Health insurance coverage Health related transition services School Transition Plan Received 3 Transition Services MCHB Core Outcome #6 The National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health. Retrieved on February 18, 2013 at http://www.childhealthdata.org/learn/NS-CSHCN. Patient-Centered Medical Home A Team Effort Strengths-Based Care Providing strength-based care requires that pediatricians do the following: • ask questions, • provide feedback, • use a framework or checklist to identify the patient’s assets, • share decision-making, and • ask parents and the patient for feedback. Empower: to promote the self-actualization or influence of Parent-Youth Interaction How comfortably do the youth and parent interact, both verbally and nonverbally? Who asks and answers most of the questions? Does the youth express an interest in managing his own health issues (including youth who have special health care needs)? Parent-Youth Interaction: Teresa • Both parents are immigrants from Vietnam. I was born in the U.S. • I became an early self-advocate due to language barrier; my parents spoke Vietnamese and understood minimal English • In healthcare this meant (at 16 yrs.): • Scheduling my own Doctor’s appointments • Interpreting • Becoming a key decision maker in important healthcare decisions equally with my parents • Begin transition conversation Taking Charge of Healthcare: Justin • Transition began around the age of 14. • Mom would take me, but would not go into the room. • Began going completely on my own at 16. • Before the appointment, parents would go over the visit with me. Surveillance of Development: Does the Youth… Demonstrate physical, cognitive, emotional, social, and moral competencies Display a sense of selfconfidence, hopefulness, and wellbeing Engage in behaviors that promote wellness and contribute to a healthy lifestyle Demonstrate resiliency when confronted with life stressors Form a caring, supportive relationship with family, other adults, and peers Engage in a positive way in the life of the community Demonstrate increasingly responsible and independent decision making Building Resilience Develop self-perception as not handicapped Nurture disabled and non-disabled friends Involve in household chores Seek family and peer support Encourage parental support without overprotectiveness Six Core Elements of Health Care Transition #1: Transition Policy “Martha Eliot Health Center is committed to a smooth transition from childhood to adolescence to young adulthood. This process requires collaboration between patients/families and the medical team. By age 14 years, all youth in our practice will begin transition planning by moving to an adolescent medicine care model. By age 18 years, all youth will participate in their own care as adults, with modifications as needed for youth with special needs. By age 22 years, all patients will receive primary care from an adult medicine provider.” #1: Transition Policy • Post in patient areas Dissemination • Put into welcome packet • Include in the office brochure • Educate staff about privacy, consent procedures Implementation • Remind families early (ages 12-14 years) • Remind families often #2: Transitioning Youth Registry #2: Transitioning Youth Registry • Especially critical for CSHCN – But helpful for all transitioning youth • Track by diagnosis, progress • Establish a timeline #3: Transition Preparation Medical Needs Non-Medical Needs Patient has opportunity to talk to provider alone Patient is developing selfefficacy Review of disease-specific guidelines Education-> vocation Review of age-specific guidelines Checklist in visit notes Plans for independent living Plans for adult support services Legal services #3: Transition Preparation - Assessment #3: Transition Preparation – EMR Checklist Ages 12 to 14 years [] Patient can name their chronic conditions [] Patient can name their allergies [] Patient can name their medications [] Patient has attended an IEP meeting [] The IEP includes a transition plan [] Family has started to keep their own health record [] Patient is assigned household chores and participates in family life [] Patient has hobbies and engages in exercise [] Family has discussed sexuality [] Family is working with patient to help them live independently Ages 15 to 17 years [] Patient can describe how their chronic conditions impact their health [] Patient can describe what each medication is for [] Patient can take their medication without supervision [] Patient has tried to refill a medication [] Patient is carrying their insurance card [] Patient has scheduled a doctor's appointment on their own [] Patient is updating their own health summary [] Patient is investigating adult doctors for primary and specialty care [] Patient/family are investigating secondary education, employment or vocational opportunities [] Family has begun guardianship applications Age 18 years + [] Signed HIPAA form (Patient or Guardian) is in EMR [] Patient has selected adult doctors for primary and specialty care [] Patient can refill their medication [] Patient has insurance/SSI benefits [] There is a formal plan in place for adult living/vocation #4: Transition Planning Update problem lists, med lists Directed referrals to adult specialists Directed referral to adult primary care Don’t forget mental health! #4: Transition Planning – Action Plan #4: Transition Planning – Portable Medical Summary #4: Transition Planning – Emergency Plan #5: Transfer of Care Complete records Portable Summary Direct Communication #5: Transfer of Care Refill all prescriptions and DME supplies Ensure equipment is in working order Plan a final visit when patient is well #6: Completion Review of the adult model of care Opportunity for feedback Acknowledgements Patti Hackett-Hunter, Med Niraj Sharma, MD MPH Richard Antonelli, MD Additional Resource: The Spina Bifida Experience: Managing Your Own Medical Care from the National Center on Birth Defects and Developmental Disabilities (Video) Got Transition? HRSA/MCHB funded collaborative Tools to implement health care transition www.gottransition.org Links to other transition sites Free webinars Teresa • 24 years old • Graduated from Univ. of Colorado Boulder in 2011. • Has worked with Got Transition in the past with webinars. • “Halfway” transitioned to adult care in D.C. for an internship. • Not yet transitioned in home town-Denver, CO. • Has worked closely with with the Colorado Medical Home Initiative, and served on the Medical Home Youth Leadership Council. Teresa: My Health Care Experience • • • • • • The “Transition to Adult Care” conversation started when I was 17 or 18 years old Many aspects of early advocacy helped me feel comfortable with managing my own health care For me factors of a successful transition include: • Provider/Specialist/Insurance matchup • Provider is in area accessible by public transportation • Best possible health condition for transition My “taste” of transition happened when I moved to DC for an internship. Things I loved: • New Provider took time with me during our consult appt. • Portable Medical Summary • Being put in touch with other providers that have expertise in transitioning special needs patients. • Knowing that there’s an option to always contact my previous provider. Transition is still in-the-works in Denver, CO for me Justin: The College Years • Made to transition to making all of my appointments. • Primary doctors were still in hometown. • Was not comfortable or equipped to find new primary care physicians. • Medical Emergency. Early Adulthood • A move for a job forced me to find new doctors. • Transition between insurance was eased by job. • Company insurance changed during employment. • Insurance forms can be intimidating. Questions? We’re Here to Help You! Have a question about medical home? Contact us! [email protected] 800/433-9016 ext 7605