Transition of Care: When, Why and How? But My Patient Is an Adult: David Drajpuch, MSN CRNP Adult Congenital Cardiology Nurse Practitioner Philadelphia Adult Congenital Heart Center Children’s Hospital of Philadelphia and Penn Medicine December 12, 2014

Transfer vs. Transition Transfer = the act of switching care from a pediatric hospital to an adult hospital Transition= entire process of moving from pediatric to adult care. This includes: Preparation and readiness for the adult health care system Transfer Long-term follow-up

The Scope of the Problem 85-90% of children with CHD survive to adulthood Adolescents with CHD are at increased risk for: Unnecessary dependency Neurodevelopmental difficulties Psychosocial delay 50-75% do not continue with regular cardiology follow-up Pediatr Cardiol 2007; 28: 126–133. J Pediatr Psychol. 1991;16:137– 49.

Capturing the ACHD Population: Lost in Transition Of patients diagnosed with CHD <6 years old, only 39% of those between 18-22 years saw a cardiology A significant number of adult patients are lost to care after they turn 18 but this attrition starts in the pediatric years. >20% of those with severe CHD are lost to care after 18 years Not just a problem in adulthood not simply because they are being told they are “good to go” We are failing this patient population in two ways ineffective transition process from peds cardiology to adult cardiology PMD are not bringing these patients back to cardiology care Mackie AS et al. Circulation. 2009;120:302-309

Not Our Problem

The Process of Transition Begins… Age at Which Pediatricians Think Transition Planning Should Begin Ages Adolescents with Special Needs without Special Needs <12 years 3% 2% 12-14 years 6 15-17 years 25 26 18-20 years 62 65 Don’t know 4 2 Does not add up to 100% due to rounding Start with the school age child This AAP survey, which included a broad set of questions on adolescent health care, was sent to a random sample of 1,605 U.S. non-retired members. Data presented here are based on 628 respondents Ask questions How are you feeling Do you know why you are here today From: Child and Adolescent Health Management Initiative. 2005/2006 National Survey of Children with Special Health Care Needs. Accessed from www.cshcndata.org/dataquery/dataqueryprint.aspx

Circulation 2011, 123:1454-1485

It’s a Problem…

Birth to 4 years Keep a copy of records – “Care Binder” Attend support groups and learn from others Begin teaching/encouraging interactions with health care team (parents and patient) Circulation 2011, 123:1454-1485

4-6 Years of Age Explain their heart condition to them in terms they can understand Begin teaching them about their medications/allergies Teach them symptoms that may indicate they are sick Talk to families about assistance if the child needs special help in school (IEP)

Improved self-care resulted in smoother transition and follow-up …family members laid the foundation of future independence by teaching and giving responsibility to the child to carry out tasks of daily living and medical self-care. Examples included talking with health care providers, ordering and taking medications, and developing positive medical habits and routines. Several participants suggested that this transfer of responsibility occur before the onset of adolescence. Improved self-care resulted in smoother transition and follow-up Pediatrics 2005;115:112–120

7-10 Years of Age Continue to work on understanding of their heart condition Continue work on medication/allergies Discuss the names of the health care team and what they do Encourage increased participation in interactions with medical team. Work on symptom recognition. Circulation 2011, 123:1454-1485

11-13 Years of Age Work on better understanding of the heart condition They should know the names of medications and what they do Encourage the child to do the bulk of the speaking during interactions with the health care team; ask parents to step out. Circulation 2011, 123:1454-1485

14-17 Years of Age Have them practice explaining their heart condition in three sentences or in detail Should know their medications and why they take them. They should do the talking during the visit. Parents should step out. The teen should take part in any decision needing to be made about their health (ascent). Begin discussion about what happens after high school…and adult providers Circulation 2011, 123:1454-1485

Adolescent Development   PSYCHOLOGIC SOCIAL Early adolescence Concrete thinking Progression of sexual identity Reassessment of body image Emotional separation from parents Start of strong peer identification Early Exploratory behaviors Mid-adolescence Abstract thinking Invincibility Identification of law with morality Further separation from parents Strong peer identification More health risk behaviors Sexual relationships with peers Early vocational plans Late adolescence Complex abstract thinking Increased impulse control Development of personal identity Social autonomy from parents Intimate relationships Emergence of vocational capability and financial independence

18 to 21 Years of Age They know their condition by this time, and are in charge of decisions! Discuss any school or work concerns (disability/insurance). Get permission to speak to parents. Consideration of transfer of care/Identify appropriate adult providers. Circulation 2011, 123:1454-1485

Psychosocial needs of the adolescent/adult patient Autonomy versus reversion to childhood Inclusion in rounds/decision making Anxiety/depression Advanced care planning Returning to school work Finances/insurance Sexual health 1 in 3 patients meets criteria for psychiatric disorder, most commonly, anxiety disorder

Key Areas of Patient Mastery Anatomy and Interventions Performed Medications/Allergies Health Maintenance Insurance Occupation and Education Guidance Fertility, Contraception, and Pregnancy Adapted from ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease. J Am Coll Cardiol 2008;52:e143–263.

Keys to Success for the ICU Nurse Recognize that self care starts at birth Develop partnership with patients and families to foster empowerment and self care

Transition of Care: When, Why and How? But My Patient Is an Adult: David Drajpuch, MSN CRNP Adult Congenital Cardiology Nurse Practitioner Philadelphia Adult Congenital Heart Center Children’s Hospital of Philadelphia and Penn Medicine December 12, 2014