Advances in pediatric care have allowed many children with chronic diseases to survive to adulthood. Up to 40% of children live with one or more congenital and/or chronic condition.1 Approximately 500,000 youth in the United States with special health care needs graduate to adulthood yearly.2 More than 90% of children born with a chronic or disabling condition will live more than 20 years.3 Many of them are ill-prepared to live as adults with these conditions. The National Surveys of Children with Special Health Care Needs demonstrate this lack of transition planning; in a 2009 to 2010 national survey, 54% of adolescents age 12 to 17 years who have special health care needs reported insufficient anticipatory guidance for transition to adult health care.4 Surveys of health care providers consistently show a systematic lack of transition support from pediatric to adult health.5
Current State of Transition
The importance of a specific transition process has been recognized by the American Academy of Pediatrics, the American Academy of Family Physicians, the American College of Physicians, and Healthy People 2020.6,7 Got Transition is a cooperative agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health, and is aimed at improving transition from pediatric to adult health care through new and innovative strategies for health professionals, youth, and families.8 Got Transition has developed the “Six Core Elements of Health Care Transition 2.0” that define the basic components of health care transition.8 The components include establishing a transition policy, tracking and monitoring transition via a patient registry, assessing transition readiness, planning for an adult approach to care, transferring to an adult approach to care, and transfer completion/ongoing care. Got Transition developed tools, samples, and evaluation measures for Pediatric, Internal Medicine, Family Medicine, and Internal Medicine-Pediatrics (Med-Peds) providers to use in transitioning youth to an adult health care model. The evaluation measures are essentially quality improvement tools for transition care to assess how the Six Core Elements of Health Care Transition 2.0 are being incorporated into clinical practices. These tools are aligned with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physician's Clinical Report on Transition and the Six Core Elements.8
The Accreditation Council for Graduate Medical Education (ACGME) requires that all residents receive training in quality improvement (QI) and patient safety programs and that they actively participate in them.9 Although QI research pertaining to transition care has increased dramatically over the past 3 years, to our knowledge there are no studies evaluating resident training in QI as it pertains to transition medicine. Previously published transition studies focused on subspecialty care.10–21 One transition QI project evaluating the use of the Six Core Elements focused on the primary care setting.22 This study involved five academic practices (two Adolescent, one Pediatric, one Family Medicine, and one Internal Medicine) with only one center involving residents (family medicine resident clinic). The study was not driven by resident education in QI but rather QI in transition care in the primary care setting.
Education regarding transition care is necessary at the graduate and postgraduate level as well as for practicing physicians to better prepare youth with chronic childhood conditions for adult health care. Many groups are advocating for increased training in residency for all providers on transition from childhood to adulthood.23 Internal Med-Peds residency programs are uniquely situated to establish programs to improve the process for transition care. Med-Peds residents spend 4 years training in Internal Medicine and Pediatrics, after which they are board-eligible in those disciplines. Because they are trained in both pediatric and adult models of care and chronic childhood diseases, Med-Peds physicians are well-positioned to address transition. The Medicine-Pediatrics Program Directors Association (MPPDA) was formed to advance medical education in Med-Peds residency programs and works in conjunction with the ACGME and other pertinent organizations to improve graduate medical education for Med-Peds residents and support the mission of combined residency training. The MPPDA states that one of the most unique and important clinical niches that Med-Peds practitioners provide is caring for youth with special health care needs as they transition into adulthood.24 The Transitional Care Committee is one of MPPDA's five committees.24
One Residency Program's Project
In one Med-Peds residency model that adapted the Got Transition protocol, residents learn about transition care and participate in a residency-wide quality improvement and patient safety program to improve the transition process.25 In the program's combined adult and pediatric clinic, each resident establishes a continuity practice caring for adults and children for both preventive and complex care. On average, each resident spends one-half day per week at his or her continuity practice. Additionally, each resident spends 1 month per year training in ambulatory practice. During these ambulatory blocks, each resident has 10 hours of protected time to work on a longitudinal transition quality improvement project shared by several trainees. A resident completing his or her block then hands the project off to the next resident assigned to the ambulatory block.
In alignment with the Six Core Elements of Transition 2.0, the program began by crafting and disseminating a transition policy for the practice to all resident and attending physicians (Core Element 1). The practice policy outlines what transition is, when it should start, how parental or guardian participation will change over the duration of medical visits, how special needs will be addressed, and how patient confidentiality will be protected. A tool was then crafted for the electronic medical record (EMR) that auto-populates the basics of a portable health summary to aid in communication between patients, families, and health providers (Core Element 4), and additional tools were designed using Got Transition's resources to assess transition readiness and set transition goals (Core Elements 3 and 4).25
The transition policy is distributed to all residents at the start of their ambulatory blocks. The first resident assigned to the block began the process of creating a registry of patients in the practice who are between ages 14 and 28 years, have been seen within the past 2 years, and have a chronic or disabling condition (Core Element 2). The next two residents evaluated the registry to ensure that all appropriate patients were included and that those not meeting the criteria were removed. The transition registry contains 201 patients from a potential 746 patients in this age range.25
The next resident used a random number generator to select 10 charts for audit. Included in the data gathered was the patient's diagnosis, whether or not transition care was mentioned in the chart, evidence of discussion with the patient and/or family regarding the transition policy, and evidence of assessment of transition readiness, needs, or transition planning. Also assessed was whether documentation was present noting if the patient was alone, with a parent, or with a surrogate decision-maker at the time of the visit, and looked for evidence of communication between primary care and specialty providers if applicable. As anticipated, the baseline data demonstrated that no charts indicated that the transition policy had been discussed with the patient and/or family. In addition, none of the charts demonstrated documentation that a transition readiness assessment tool was completed. Documentation of transition planning was present in only 2 of the 10 charts reviewed.25
The next group of ambulatory residents will identify their patients in the registry and arrange a transition visit. At the visit, the resident will discuss the transition policy, craft a portable health summary using the EMR tool, review the summary and provide copies for the patient and/or guardian, assess transition readiness and needs using the EMR or Got Transition tool, and document transition goals for the coming year. Every 3 to 4 months, residents will conduct follow-up chart audits.
In summary, Got Transition's Six Core Elements of Health Care Transition 2.0 is an example of a tool that can be used as a residency-wide QI project aligned with the goals and objectives for training Med-Peds residents about providing adequate transition care. In our view, the goal of implementing transition care throughout the health care system is achievable within the structure of a residency program. Because Got Transition modifies the Six Core Elements for use by pediatric, and adult medicine, as well as related practices, these QI tools can be used to train all primary care categorical and combined residents in both QI and transition care.
- Mora MA, Moons P, Sparud-Lundin C, Bratt E-L, Goossens E. Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review. Syst Rev. 2016;5(1):166. doi:10.1186/s13643-016-0344-z [CrossRef]
- Perrin JM, Bloom SR, Gotmaker SL. The increase of childhood chronic conditions in the United States. JAMA. 2007;297:2755–2759. doi:10.1001/jama.297.24.2755 [CrossRef]
- No authors. Transition of care provided for adolescents with special health care needs. American Academy of Pediatrics, Committee on Children with Disabilities and Committee on Adolescence. Pediatrics.1996; 98(6):1203–1206.
- Data Resource Center for Child and Adolescent Health. National survey of children with special health care needs. http://www.childhealthdata.org/browse/survey/results?q=2049&t=1&ta=574&r2=15. Accessed April 26, 2017.
- Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care, an internist's perspective. Pediatrics. 2009;123(2):417–423. doi:10.1542/peds.2008-0740 [CrossRef].
- American Academy of Pediatrics. Clinical report—supporting the health care transition from adolescence to adulthood in the medical home. https://depts.washington.edu/dbpeds/Healthcare%20Transition%20(teen%20to%20adult)%20w.algorithm%20(AAP_2011).pdf. Accessed April 26, 2017.
- HealthyPeople.gov website. DH-5: Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care. https://www.healthypeople.gov/node/4153/data_details. Accessed April 26, 2017.
- Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health. Six Core Elements of Health Care Transition 2.0. Transitioning to an adult approach to health care without changing providers. http://www.gottransition.org/resourceGet.cfm?id=210. Accessed April 28, 2017.
- Accreditation Council for Graduate Medical Education Common Program Requirements. http://www.acgme.org/Portals/0/PFAssets/ProgramRequirements/CPRs_07012016.pdf. Accessed April 28, 2017.
- Croteau SE, Padula M, Quint K, D'Angelo L, Neufeld EJ. Center-based quality initiative targets youth preparedness for medical independence: HEMO-Milestones Tool in a comprehensive hemophilia clinic setting. Pediatr Blood Cancer. 2016;63(3):499–503. doi:10.1002/pbc.25807 [CrossRef].
- Fredericks EM, Magee JC, Eder SJ, et al. Quality improvement targeting adherence during the transition from a pediatric to adult liver transplant clinic. J Clin Psychol Med Settings. 2015;22(2–3):150–159. doi:10.1007/s10880-015-9427-6 [CrossRef].
- Gold A, Martin K, Breckbill K, Avitzur Y, Kaufman M. Transition to adult care in pediatric solid-organ transplant: development of a practice guideline. Prog Transplant. 2015; 25(2):131–138. doi:10.7182/pit2015833 [CrossRef].
- McManus M, White P, Barbour A, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56(1):73–78. doi:10.1016/j.jadohealth.2014.08.006 [CrossRef].
- Disabato JA, Cook PF, Hutton L, Dinkel T, Levisohn PM. Transition from pediatric to adult specialty care for adolescents and young adults with refractory epilepsy: a quality improvement approach. J Pediatr Nurs. 2015;30(5):e37–45. doi:10.1016/j.pedn.2015.06.014 [CrossRef].
- Wiemann CM, Hergenroeder AC, Bartley KA, et al. Integrating an EMR-based transition planning tool for CYSHCN at a Children's Hospital: a quality improvement project to increase provider use and satisfaction. J Pediatr Nurs. 2015;30(5):776–787. doi:10.1016/j.pedn.2015.05.024 [CrossRef].
- Gravelle AM, Paone M, Davidson AG, Chilvers MA. Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative. J Pediatr Nurs. 2015;30(1):236–243. doi:10.1016/j.pedn.2014.06.011 [CrossRef].
- Sanabria KE, Ruch-Ross HS, Bargeron JL, Contri DA, Kalichman MA. Transitioning youth to adult healthcare: new tools from the Illinois Transition Care Project. J Pediatr Rehabil Med. 2015;8(1):39–51. doi:10.3233/PRM-150317 [CrossRef].
- Okumura MJ, Ong T, Dawson D, et al. Improving transition from paediatric to adult cystic fibrosis care: programme implementation and evaluation. BMJ Qual Saf. 2014;23(Suppl 1):i64–i72. doi:10.1136/bmjqs-2013-002364 [CrossRef].
- Nieboer AP, Cramm JM, Sonneveld HM, Roebroeck ME, van Staa A, Strating MM. Reducing bottlenecks: professionals' and adolescents' experiences with transitional care delivery. BMC Health Serv Res. 2014;14:47. doi:10.1186/1472-6963-14-47 [CrossRef].
- Annuziato RA, Baisley MC, Arrato N, et al. Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services. J Pediatr. 2013;163(6):1628–1633. doi:10.1016/j.jpeds.2013.07.031 [CrossRef].
- Harden PN, Walsh G, Bandler N, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ. 2012;344:e3718. doi:10.1136/bmj.e3718 [CrossRef].
- McManus M, White P, Barbour A, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56:73–78. doi:10.1016/j.jadohealth.2014.08.006 [CrossRef].
- Sharma N, O'Hare K, Antonelli RC, Sawicki GS. Transition care: future directions in education, health policy and outcomes research. Acad Pediatr. 2014;14:120–127. doi:10.1016/j.acap.2013.11.007 [CrossRef].
- Medicine-Pediatrics Program Directors Association website. http://mppda.org/?page_id=82. Accessed April 26, 2017.
- Volertas S, Rossi-Foulkes R. Utilizing QI in residency education to improve transition care. Poster presented at: University of Chicago Internal Medicine Resident Research Day. ; April 27, 2017. ; Chicago, IL. .