We’ve Got a Problem...A Grown-Up Problem.

dreamstime_s_34578257.jpg

Ruchi Kaushik, MD, MPH

August 14, 2019

We’ve got a problem.  A grown-up problem.  It’s certainly a GOOD problem to have, but, nevertheless, still a problem, and similar to all problems, it needs a solution.  A grown-up solution.

Today’s medical knowledge and technology have allowed us to improve survival and quality of life for children with special health care needs.  Fortunately, more than four out of five children born today with chronic conditions will live into adulthood.1 As of 2010, more than half of all individuals with cystic fibrosis were adults.2 And over the next decade, roughly 90,000 persons with congenital heart disease are expected to enter adulthood.3 Indeed, there are currently 18 million young adults 18-21 years of age, one in five of whom have a chronic condition.4

And, yet, pediatricians remain so attached to our patients.  We are afraid to let go or afraid adult doctors will not be comfortable caring for our patients; similarly, our patients are afraid of moving on and not ready to trust a new provider.5 But it is time to face our fears.  Evidence suggests that health outcomes for young adults with chronic conditions are improved when they have smoothly transitioned into an adult model of care.6

So, why can’t pediatricians just continue to see young adults with conditions that begin in the womb or early childhood?  Well, while we are great at immunizing, developmental screening, and discussing safety topics, we may not be so great at recognizing signs of diseases of adulthood, discussing family planning, or recalling the timing of other important preventive screenings (eg mammograms, cholesterol tests).  Certainly, these are all topics we can brush up on, but what’s more important than transferring to adult care is transitioning to the adult model of care.  

Fortunately, the National Alliance to Advance Child Health has developed “Got Transition”7, a partnership with the Maternal and Child Health Bureau aimed to help young adults and families with health care transition via its website, www.gottransition.org.  The site’s resources can assist with understanding their pediatrician’s transition policy, checking to see if your teen is transition ready, keeping a portable medical summary, and transferring care.

It’s helpful to keep a checklist.  The Children’s Hospital of San Antonio Adolescent Transition and Adult Care Committee has created a list of the different aspects of health care transition:

  • Locating Adult Health Care Providers

  • Insurance and Care Coordination

  • Managing Appointments

  • Managing Medications

  • Managing Equipment and Therapies

  • Managing Medical Information/Record Keeping

  • Medical Decision-Making/Conservatorship

This checklist and many other helpful resources are also available on our Transition Webpage, www.chofsa.org/transition.  A great first step is to locate where you are in the process.  Does your teen know the name of her specialist or the doses of her medicines?  Can she find the phone number to her insurance company?  Ask your teen to complete the Transition Survey (available in English and Spanish), which will highlight her strengths and her opportunities to learn.  

Other Health Care Transition resources include Navigate Life Texas (www.navigatelifetexas.org) and Texas Parent to Parent Pathways to Adulthood Transition Program (www.txp2p.org).

You’ve been an advocate for your child for over a decade, and this has provided the greatest role modeling for her to now advocate for herself.  Encourage her to make an appointment and talk to her pediatrician today about the next step in her future.

Ruchi Kaushik, MD, MPH, FAAP

Assistant Professor, Pediatrics

Chair, Adolescent Transition and Adult Care Committee

Medical Director, ComP-CaN (Comprehensive Peds for Complex Needs)

Medical Director, Children's Hospital of San Antonio Blog (CHofSAblog.org)

Baylor College of Medicine

Children's Hospital of San Antonio

1) Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113(3 Pt 1):e197-205.

2) Tuchman LK, Schwartz LA, Sawicki GS, Britto MT. Cystic fibrosis and transition to adult medical care. Pediatrics. 2010;125(3):566-573.

3) Warnes CA, Liberthson R, Danielson GK, Dore A, Harris L, Hoffman JIE, Somerville J, Williams RG, Webb GD. Task force 1: the changing profile of congenital heart disease in adult life. Journal of the American College of Cardiology. 2001;37(5):1170-1175.

4) Transition of PSHCNs to adult medical care webinar series. NYMAC. http://aapdc.org/event/transition-of-pshcns-to-adult-medical-care-webinar-series/2015-02-11/. Accessed March 15, 2019.

5) O’Sullivan-Oliveira J, Fernandes SM, Borges LF, Fishman LN. Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role. Continuing Nursing Education. 2014;40(3):113-142.

6) Tuchman L, Schwartz M. Health outcomes associated with transition from pediatric to adult cystic fibrosis care. Pediatrics. 2013;132(5):e847-853.

7) Got Transition. gottransition.org. https://www.gottransition.org/index.cfm?. Accessed March 15, 2019.

Health, General ResourceExceptional Kids