By Peggy McManus, MHS, Dan Beck, MA, and Patience White, MD, MA
Health care transition is one of 15 national priority areas selected by the Maternal and Child Health Bureau (MCHB) as part of the MCH transformation. The performance measure calls for youth with and without special health care needs to receive services necessary to make the transition from pediatric to adult health care. Got Transition, the MCHB national resource center on transition, has been working with MCHB, AMCHP, and five state Title V agencies (Maryland, Ohio, Oregon, Texas and Wisconsin) to develop a set of options for states planning to select and implement transition as one of their national performance measures. The intent of these combined efforts is to create a set of evidence-informed recommendations aligned with the 2011 Clinical Report on Health Care Transition from the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP); the Six Core Elements of Health Care Transition (a set of clinical tools based on the Clinical Report), and the National Standards for Systems of Care for Children and Youth with Special Health Care Needs.
This article describes transition needs assessment steps that state Title V agencies may want to consider as part of their Title V MCH Services Block Grant application due by July 2015.
- Stakeholder Engagement: To achieve transition progress, both pediatric and adult providers need to be involved at the outset. Examples of adult provider stakeholder groups that Title V agencies may want to reach out to include state chapters of the American College of Physicians, AAFP, Med-Peds Section of the AAP, and Adult Nurse Practitioners; leaders involved in adult medical home initiatives; health plan officials and payers involved in delivery system reforms; and/or state chronic disease programs. The intent of this outreach is to introduce the Clinical Report and the Six Core Elements and to begin to identify leaders interested in transition for future quality improvement and systems development efforts. See the Texas example in the Member to Member section.
- Assessing Transition Needs among All Adolescents, Including Youth with Special Needs: To obtain state-specific information on transition performance from the 2009-10 National Survey of Children with Special Health Care Needs, visit the research section on the Got Transition website. New state transition data for youth with and without special needs will not be available from MCHB until 2017. In the meantime, we recommend that states use the 2009-10 data and avoid conducting new studies on transition barriers since this type of research repeatedly shows a consistent set of problems – problems finding adult providers, time and reimbursement problems, difficulties ending long-standing pediatric relationships, lack of communication and coordination between pediatric and adult systems, lack of training in childhood-onset conditions among adult providers, lack of early and ongoing support in transition preparation for consumers, and lack of current medical information transferred to adult providers.
- Examining Transition Strengths and Capacities: Recognizing the many transition efforts that state Title V programs are involved in, we encourage states to determine the extent to which these initiatives include 1) youth with and without special needs and parents/caregivers, 2) both pediatric and adult health care providers, 3) a transition policy, 4) a method for tracking individual/provider transition progress, 5) a transition readiness/self-care assessment, 6) a plan of care with transition information, 7) a medical summary and emergency care plan, 8) a transfer checklist and 9) consumer feedback. See the Maryland example in the Member to Member section.
- Selecting Transition Priority Areas: States can elect to follow the Six Core Elements of Health Care Transition or the National Standards for Systems of Care for CYSHCN. It is important to note that while these two are very similar, they are not the same. The Six Core Elements offers more explicit detail. Importantly, Got Transition has been working with AMCHP to ensure a close crosswalk for implementing and measuring transition performance using the system standards. This crosswalk will be posted to the AMCHP website and shared with Title V CYSHCN programs in the coming month.
- Setting Transition Performance Objectives: We recommend that states establish a baseline for transition using the "Current Assessment of Health Care Transition Activities" that is part of the Got Transition Six Core Elements. This can be used with pediatric and adult practices starting a transition improvement project, as Wisconsin has done, or it can be used with Title V contracted programs or in a larger health plan or system. Once the baseline has been established, states can partner with these key stakeholder groups to select improvement goals and track progress. See the Wisconsin example in the Member to Member section.
- Developing a State Action Plan: Over the course of the next few months, Got Transition will continue working with AMCHP and state Title V CSHCN directors and adolescent health coordinators to develop options for transition strategies that states can use, again aligned with the Six Core Elements and the National Standards for Systems of Care for Children and Youth with Special Health Care Needs. This is a team effort and a work-in progress.
For comments or suggestions, please contact Dan Beck at firstname.lastname@example.org or Peggy McManus at email@example.com.