By Albert Hergenroeder, MD
Professor of Pediatrics and Chief, Adolescent and Sports Medicine, Texas Children's Hospital
Constance Weimann, PhD
Associate Professor, Pediatrics-Adolescent Medicine and Sports Medicine, Baylor College of Medicine
Currently, 90 percent of children and youth with special health care needs (CYSHCN) of primarily a physical nature in the United States will enter adulthood. Although CYSHCN are living longer, methods to improve survival have not been matched by methods to maintain their quality of life and/or medical care as they transition from pediatric to adult based health care. As a result, increased morbidity and mortality have been reported in this post transition period if the health care transition (HCT) is poorly managed. The need for improved HCT at the local, state and federal levels has been recognized for a generation, and call for action has gained momentum over the past decade.
Texas Children's Hospital and the Department of Pediatrics, Baylor College of Medicine responded to this need with initiating two major initiatives that are discussed in this article: 1) establishing a HCT planning program around an electronic medical record-based transition planning tool; and 2) an annual, international HCT conference bringing together a unique collaboration of diverse stakeholders. These initiatives are discussed below.
Transition Planning Tool
Texas Children's Hospital (TCH) has developed a Transition Planning Tool (TPT) that provides an infrastructure allowing youth and young adults with special health care needs (YYASHCN) and their families to plan their health care transition (HCT) from pediatric to adult based care. The TPT was designed as a 'test of mastery' to evaluate and remedy gaps in the patient's condition-specific knowledge and skills needed for successful HCT. TCH integrated the TPT into Epic, its electronic medical record (EMR). The TPT directly or indirectly addresses five of the six core elements suggested for health care transition (Got Transition/Center for Health Care Transition, 2014).
The patient's and/or family's HCT knowledge and skills are assessed through dialogue initiated using 13 core questions, which were based on expert opinion and empirical literature. Content areas include knowing their illness and its manifestations, when an emergency is developing, how to refill prescriptions, and self-administer medications; treatment adherence; issues related to reproductive health, substance use, and insurance; and identifying an adult provider. The first question is "Can you tell me about your disease/disability?" If the patient does not provide a satisfactory explanation of their disease in the judgment of the clinician asking the question, then one or more of three education options is employed: an explanation of the disease is given by a care provider; a written fact sheet with an explanation of the disease is given; or a printed homework assignment is provided asking the patient to write the name of their disease/disability in the designated space and a short letter to a friend describing their disease/disability. At the next clinic visit, the homework assignment is reviewed. When the patient masters a question they are given a "successfully accomplished" designation in the Epic flow-sheet. Ideally, the patient will have successfully accomplished all 13 questions before leaving TCH. The TPT has a prepopulated portable medical summary that can be generated after any clinic visit and can be used in any inpatient or outpatient setting. A subset of questions is available to use with parents/caregivers whose children are developmentally unable to participate. More information on this TPT is available on request and the tool is available for Epic users to incorporate into their hospital/health systems: https://galaxy.epic.com/?#Browse/page=1!68!600!1733006.
Providers using the TPT have become more patient-centered, directing their discussions at the patient's actual knowledge and skills, rather than assuming what the patient knows. After using the TPT, one provider realized how little her patients knew about their disease, despite considerable patient education efforts. She now starts with the first TPT question in all adolescent patients. Other providers have formalized HCT planning by focusing on the patient, whereas prior to using the TPT they thought they were reinforcing patients' self-management knowledge and skills, when in fact much of the knowledge and skills was in the hands of the parents. Providers also have begun to appreciate the complexity of HCT planning and the need to start earlier: documentation of HCT planning is now occurring in 14-year-olds. The TPT has become an intervention that enables YYASHCN and their families to have conversations with their providers about the likelihood that they will survive into the third decade or beyond and the need to plan for independent living. Use of the TPT has expanded to 98 individual providers using the TPT with 498 individual patients in 25 clinics.
The annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care was founded in 2000. This meeting is sponsored by Baylor College of Medicine Office of Continuing Medical Education and Texas Children's Hospital. The planning committee includes members from many professional disciplines, family members and advocates. It is designed to further attendee knowledge about and skills related to HCT and to provide an unusual platform for interaction among a broad spectrum of stakeholders at the clinical and public health level and from the community, state, and federal perspectives, including YYASHCN and families, state Title V CYSHCN programs led by the Texas Title V CYSHCN Program (provides funds for YYASHCN and their families to attend the conference and for live broadcast across Texas), the MCHB-funded Association of University Centers on Disabilities (AUCD; funds the live broadcast of the Conference to LEND and other training programs nationally), Baylor College of Medicine, Texas Children's Hospital, and the Baylor University Robbins Institute for Health Policy and Leadership. The conference is attended by an interdisciplinary spectrum of health care professionals, including pediatricians, family medicine, internal medicine, combined medicine-pediatric physicians, psychiatrist as well as social workers, nurses and other health care coordinators/navigators; dieticians; psychologists; counselors; hospital and clinic administrators; public health officials; and community agency representatives (continuing education credits are offered). The 16th Annual Conference will be held Oct. 1-2, 2015 (see www.baylorcme.org for regularly updated information regarding the conference. For more information e-mail firstname.lastname@example.org) in the Texas Medical Center, Houston. Archived talks from the 2013 Transition Conference can be viewed at: http://texaschildrens.org/Transition-Talks.
The conference includes didactic presentations, parent and young adult panels, breakout sessions, and question and answer sessions. The topics include: HCT for specific diseases, yet the principles apply across all disease states; legal issues, health care reform, and guardianship (this has been the most highly rated topic consistently for 15 years); neurocognitive disabilities and HCT, models, systems and financing of HCT and youth and family perspectives, the latter being a tradition with one half day of the conference in which the youth, parents and family members are faculty. Since 2011, it has been held in conjunction with the annual meeting of the Health Care Transition Research Consortium (HCTRC), which added an important research complement to the conference. The 7th annual HCTRC annual meeting will be held in the same venue as the Transition Conference on Sept. 30, 2015. Conference attendance has grown from 52 participants in its inaugural year (2000) to an average of more than 400 participants annually, including those at broadcast sites, over the last five years. A rigorous evaluation has allowed the conference to improve to better meet the needs of attendees over the years. Evaluations from 2014 indicate that presentations consistently met or exceeded participant expectations. The majority (95 percent) of conference participants reported that the learning objectives were "very/mostly" met; 90 percent stated that content was "very/mostly" related to their practice; and 90 percent reported the syllabus/program handouts were "very/mostly" useful. An overall appraisal of the program was "excellent" (61 percent) or "good" (37 percent) and 99 percent said they would recommend the conference to others. Representative comments support these evaluations:
"Great program. I have never seen a conference address this topic so thoroughly."
"Thanks you for providing the adolescent and family perspective; this was probably the most valuable perspective."
"At the conference I learned how to get insurance for my son. That fundamentally changed our lives for the better."
"Our transition program is just beginning. Much of the material provided here will be very helpful in getting our program off the ground."