Transitional care in the med-peds clinic

Objectives 1. To understand the definition and concept of transitional care. 2. To gain knowledge on transitioning the youth with special health care needs. 3. To understand transitional care in the context of Med-Peds training. 4. To gain resources to promote effective transitioning of youth with special health care needs.

Transition definition The movement from adolescence to adulthood in all aspects of life including home, health care, education, and community

Healthcare Transition Definition “The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system” –Society of Adolescent Medicine

WHO’S INCLUDED? Asthma ADHD Diabetes mellitus Sickle cell disease Cystic fibrosis Chronic kidney disease Inflammatory bowel disease Congenital heart disease Childhood cancer survivors Solid-organ transplant recipients Spina bifida Downs syndrome …ALL pediatric patients!!!

transition experience??? How was your transition experience???

IMPORTANCE 500,000+ youth in the United States who have special health-care needs are entering adulthood yearly 90% with special health care needs survive into adulthood Cystic Fibrosis

Consequences of poor transitioning ↑ Organ rejection (Watson, 2005; Annunziato, 2007) ↑ Hgb A1C (Cadario, 2009) ↑ Disease activity in Rheumatoid arthritis (Hersh, 2009) Lapse of medical care in Congenital heart disease (Yeung, 2008) 32% told no need for follow up care 3.1 times more likely to require urgent cardiac care ↑ 2o conditions, late effects & complications ↑ Alzheimer in Downs Syndrome <50 years (Dykens, 2007) ↑ Adverse effects (seizures, deafness) in cancer survivors (Condren 2005) ↑ Cognitive deficits (Kadan-Lottick et al., 2002) ↑ Unemployment (Guerney et al., 2009) ↑ Not married (Guerney et al., 2009)

Bright Futures: Stages of Development Interdependence Self efficacy Early Autonomy Parent Effectiveness Alliance with parents

SHARED MANAGEMENT MODEL Stage Provider Parent Young Person 1 Major responsibility Provides cares Receives care 2 Support to parent & child Manages Participates 3 Consultant Supervisor Manager 4 Resource Early Adolescence Late Adolescence

What are the barriers to proper transitioning?

Issues related to Transition Envisioning a Future Basic knowledge Self care Doctor visits Healthcare Transition Transition to Adulthood **Varies based upon an individual’s cognitive & physical limitations**

Envisioning a Future GOAL: Independence, Self-care! TIMELINE: Intermittently during disease-free periods from the time of diagnosis … not at time of transition to adulthood! Ask parents: “What are you hoping for your child?” “What do you envision for your child?” Ask patients: “Where do you plan on living?” “Who do you plan on living with?” “What kind of education or job do you want to pursue?” “Do you want to be financially independent?”

Basic Knowledge Adolescent should be able to: Able to name health condition Able to know effects of health condition Able to name medications Able to know effects/side effects of medications

Self Care Acquire knowledge of good health habits Provided with age-appropriate anticipatory guidance Includes counseling on sexual health practices, tobacco, and illicit drug use Able to comply with medication and treatment regimen Take medications properly Ensure adequate medication supply Use treatment equipment properly

Doctor Visits Knows physicians and their scope of care Able to identify single provider to assume responsibility for care and coordinate subspecialty services Able to make and attend appointments Able to answer physician’s questions Knows important questions to ask physicians Able to be assertive to obtain care needed

Healthcare Transition Finding adult primary care provider and subspecialists Assessing future medical needs Ensuring adequate transfer of information Written portable medical plan which includes: Emergency summary page Medical history including current treatments Providers’ contact information Medications Allergies Questions for future visits

Transition to Adulthood New legal rights Begins at 18 years old Independence in medical decision-making with parents no longer having automatic access to medical records Parents still good consultants and invaluable resource within the boundaries of HIPAA Exception: Guardianship appointment due to mental limitations If applicable, legal process should start prior to 18th birthday – ideally between 16-18 years old Acquiring and maintaining health insurance Knowing how to get care in cases of emergency

MED-PEDS TRAINING POSITIVES Lifetime continuity of primary care provider Familiarity of childhood diseases and their natural progression ~90% of Med-Peds graduates comfortable caring for patients with special healthcare needs Able to help patient navigate from pediatric to adult subspecialists Provide home for medical information Keeping up-to-date WebCis Problem Lists and Medication Lists for all providers to see Able to provide lifelong, age-appropriate anticipatory guidance

MED-PEDS TRAINING (contin.) LIMITATIONS Patients have natural transition points when they have to graduate from the pediatrician’s practice and enter the adult world of internal medicine AAP recommends that pediatricians should not provide care beyond 21 years of age Med-Peds practice requires physician to make a conscious effort to transition the patient through the stages of development and to continue to increase patient autonomy despite lack of obvious transition points

Early Adolescence (Ages 12-14) Assess and reassess transition readiness at every routine visit (at least on an annual basis) with both the patient and parent/legal guardian to establish a transition plan and create a portable medical summary FloridaHATS (http://www.floridahats.org/?page_id=608) Great resource including disease-specific information Provide patient time alone with physician to increase patient autonomy Establish portable medical summary Administer age-appropriate screening and anticipatory guidance Screen for sexual activity, substance use, mood disorders (HEEADSSS, GAPS) Helpful resource: http://www.prch.org/arshepdownloads GAPS is available at the AMA website (http://www.ama-assn.org/) Administer routine immunizations

Late Adolescence (Ages 15-17) In addition to Early Adolescence recommendations… Continue to reassess transitional readiness with emphasis on young adult taking the lead role in care Keep patient’s portable medical summary up-to-date Begin to plan transition to adult subspecialists in coordination with current pediatric providers Help with maintaining patient’s insurance Explore educational and vocational goals Ticket to Work Program (http://www.ssa.gov/work) Great resource with local contact info Discuss legal rights as 18th birthday approaches and initiate plans to secure guardianship when mental limitations exist

Patient Resources Patient and family handouts Transition plans including timelines & questionnaires to assess readiness Portable medical summaries Additional information including transition information on particular chronic diseases North Carolina Office on Disability and Health http://www.fpg.unc.edu/~ncodh/ChildandAdolescent Health/ FloridaHATS http://www.floridahats.org/?page_id=608 CHAT Project (links to UNC-based resources) http://www.mahec.net/quality/chat.aspx?a=10 University of Washington http://depts.washington.edu/healthtr/ Healthy and Ready to Work http://www.hrtw.org AAP Portable Medical Summary http://www.aap.org/advocacy/blankform.pdf http://www.aap.org/advocacy/eif.doc Ticket to Work Program http://www.ssa.gov/work