November 2019, Volume XXXIII, No 8

Pediatrics

Youth with special health needs

Lost in transition

“I cannot speak to what barriers or challenges Minnesota faces that make it impossible to provide my son with the information, resources, and guidance he needs to successfully transition to adult health care. I can only state that this failure is coming at a cost to my son and to my family. He is lost, and we are lost.”

– Parent of a youth with special health needs

dolescence is a period of rapid change, development, excitement, and sometimes fear and confusion. For youth with disabilities or other special health needs, this period is especially complex, with added factors of disease management and continuing supports. This article addresses the importance of a coordinated health care transition and call to action to improve processes and outcomes in Minnesota.

Who are Youth with Special Health Needs?

Youth with special health needs (YSHN) are adolescents and young adults who meet two criteria: 1) are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and 2) require health or related services beyond that generally required. Through advances in medicine and more purposeful inclusion, children with special health needs are experiencing longer, fuller lives, with over 90% living to at least 20 years of age. In Minnesota, an estimated 112,537 youth (25.6% of all 12- to 17-year-olds) currently navigate through adolescence with a special health need.

What is transition and why is it important?

Health care transition is the process through which youth move from pediatric to adult-centered health care. Three phases comprise health care transition: 1) transition planning and preparation, 2) transfer of care, and 3) integration into adult health care. Each of these phases has unique barriers to success and opportunities for improvement. Health care transition forms the framework for healthy adult outcomes through appropriate, sufficient, and successful access to necessary preventive and condition-specific adult care.

In Minnesota 25.6% of all 12- to 17-year-old currently navigate through adolescence with a special health need.

The Institute of Medicine, the American Academy of Pediatrics, the American Academy of Family Physicians, the American College of Physicians, the Agency for Healthcare Research and Quality Improvement, and the Maternal Child Health Bureau have all identified successful health care transition as a pressing need for population health. Studies of youth with specific chronic conditions, such as diabetes, sickle cell disease, and congenital heart disease, document higher rates of hospitalizations, emergency care utilization, gaps in care, and declines in condition-specific outcomes in youth when health care transition is not facilitated successfully.   Additionally, results from quality improvement projects related to health care transition of YSHN demonstrate that early initiation (at ages 12–14) of transition planning and adoption of standardized transition policies leads to smoother handoffs from a provider perspective.

YSHN, like all youth, also require preventive guidance and services regarding their emotional, physical, and sexual development throughout the time period of transition. A University of Minnesota study of youth interactions with health care providers demonstrated that youth with mobility limitations were less likely to report discussing topics such as substance use and sexual and reproductive health with providers. This study and related narratives from YSHN and their families validate the importance of addressing the holistic health needs of youth, in addition to potentially complex medical care, throughout this dynamic period of life.

What is the current status?

Minnesota youth and their families are not receiving needed supports to transition to adult health care. According to the most recent National Survey of Children’s Health, 76.7% of YSHN in Minnesota do not receive the recommended supports needed to prepare for and transition to adult health care. In studies of both YSHN perspectives and their families, a common theme is the lack of information and guidance throughout the transition process. One parent interviewed by the Minnesota Department of Health (MDH) noted:

“My son is a full-time student and he also has a disability … My husband and myself both work full-time. It is absolutely overwhelming to all three of us to carve out the time and energy to independently seek out the information, resources, and guidance we need to support my son’s successful transition to adult health care—so it just doesn’t get done.”

One particular area where YSHN, families, providers, and payers need standardized guidance is around shared decision-making. An especially difficult area is balancing the youth’s autonomy while navigating legal and relational challenges of guardianship. One MDH partner mentioned:

“There is very little guidance or support for teens, young adults, and families in thinking through the relationship aspects or the legal aspects of how, when, where and with whom to make important life decisions around transition.”

Regardless of health needs, youth have unique preferences and goals with which they want to direct their lives. For youth with complex communication or functional needs, families and providers require tools to anticipate these more difficult conversations and successfully meet the individual needs of the youth and set them up for success.

Providers face time, communication, and training barriers. Both pediatric and adult providers report that increased time and coordination are necessary to provide quality care and coordination to YSHN during transition. Not only is more time needed face-to-face with YSHN and the pediatric or adult teams, but significant hours must be spent in consultation and communication between pediatric and adult clinicians. Billing for time spent planning, preparing, and communicating about transition is complex and not sufficient to incentivize full implementation.

[Three-fourths] of YSHN in Minnesota do not receivethe recommended supports needed to prepare for and transition to adult health care.

Pediatricians supporting YSHN report multiple barriers to achieving successful health care transition for their patients. Noted pediatric barriers include:

  • Difficulty identifying qualified and willing adult specialty providers.
  • Hesitancy from the youth and their family to transition to adult care.
  • Insufficient institutional support (personnel, resources, time for preparation).

Internists are more likely than pediatricians to report insufficient training as a barrier to serving the unique needs of transition-age YSHN. A survey of internists revealed that the most pressing concerns when taking on YSHN as patients were:

  • Lack of knowledge of pediatric-onset conditions.
  • Insufficient experience working with the unique behavioral, developmental, and psychosocial needs of young adults.
  • Difficulties collaborating with others who serve YSHN.
  • Lack of partnership with caregivers of adolescents/adults.

Health care systems are fragmented and lack standardization. Most delivery systems are not using structured or coordinated transition processes. MDH has worked with health care systems and clinics to improve the transition process and outcomes. Clinics have reported particular barriers in three areas: 1) implementing a health care transition policy, 2) receiving youth and family feedback about transition support and assistance, and 3) ensuring transfer completion and ongoing care.

A frequently mentioned issue for families and providers during MDH key informant interviews was how services and supports were clinic-centered rather than person-centered. Families not only noted this patchwork in and between health systems, but also considering school and community supports. One parent interviewed stated:

“Systems … need to coordinate to make a single plan for the child where they support and reinforce each other. Right now each system is in their own silo and a lot of opportunity to help families of children with special health needs is missed. It feels like a lot of what is done is minimal and allows that silo to check an item off a box rather than to make sure that the needs are thoroughly addressed.”

Technology and data sharing capabilities are the gateway to more integrated and well-tuned systems. Both pediatric-sending and adult-receiving practices lack interoperability of various electronic health record (EHR) systems. In MDH key informant interviews, families reported that their youth have files in three or more different EHR systems. Providers also noted the inability to share sufficient medical summary information or communications between clinic systems as a barrier.

What is needed?

Health care systems need standardized transition practices. Processes in health care and adjacent systems must better facilitate seamless transition, incorporating elements such as:

  • Documented transition policies and procedures for both adult and pediatric health systems, including standard target ages for transition activities.
  • Indicators of successful transition (e.g., assessment of readiness) integrated into routine, preventive well child visits starting at age 12 and documented into EHRs.
  • Distribution of developmentally appropriate information and resources to YSHN and their families throughout the transition process.

Providers require additional training and support on transition. Health care providers, including care coordinators and nurses, have consistently reported increased needs for education and training related to YSHN. Educational institutions and health agencies must promote training opportunities that:

  • Build capacity of future providers throughout undergraduate, graduate, residency, and sub-specialty trainings, requiring the care of YSHN as an area of knowledge competency.
  • Meet Continuing Medical Education (CME) or similar accreditation requirements so providers at all levels receive credit for trainings.
  • Include multiple modalities, such as online learning modules, to accommodate providers in varying locations and degrees of availability.
  • Address topics such as person-centeredness, legal complexity of guardianship, insurance challenges, well-being, and sexual and reproductive health.
  • Increase the capacity of providers to work with complex psychosocial and neurodevelopmental needs, a reported heightened challenge from clinicians.

Payers should incentivize successful transition. Current payment structures do not promote innovation in improving health care transition. Payers should develop financing structures that:

  • Compensate health systems and care providers for implementing health care transition activities, such as using transition-specific payment codes.
  • Encourage partnerships and collaboration between providers, such as paying for pediatric providers to provide consultation to adult providers on pediatric-onset conditions.
  • Provide performance-based incentives when youth are successfully prepared and transferred to adult providers through transition-focused quality measures.

Where can you learn more?

To learn more about health care transition for YSHN in Minnesota, visit the MDH website transition page (https://tinyurl.com/mp-mdh-yshn), which includes a white paper on transition. Also, visit Got Transition/Center for Health Care Transition Improvement (https://www.gottransition.org/index.cfm), which provides information on transition best practices for youth, parents, and providers.

Elise Holmes, MPP, is the Policy & Planning Analyst in the Children and Youth with Special Health Needs (CYSHN) Section at the Minnesota Department of Health (MDH).

Wendy Berghorst, MSN, is the Coordinated Care Systems Specialist at CYSHN, MDH.

Sarah MapelLentz, JD, MPH, is the Family Professional Partnerships Coordinator at CYSHN, MDH.

Blair Harrison, MPH, is the Research Scientist and Evaluator at CYSHN, MDH.

Sarah Dunne, MPH, MSW, is the Capacity Building Unit Supervisor at CYSHN, MDH. 

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Sarah Dunne, MPH, MSW, is the Capacity Building Unit Supervisor at CYSHN, MDH.