Overcoming Barriers to Transition from Pediatric to Adult Neuromuscular Health Care

Overcoming Barriers to Transition from Pediatric to Adult Neuromuscular Health Care

At an age when young adults undergo many biological and psychosocial changes, individuals living with neuromuscular diseases (NMDs) also face the hurdle of transitioning from pediatric chronic care to the specialized services of adult health care providers. “This is a tricky area and age,” said Amanda Witt, MD, Professor of Neurology at the University of Mississippi Medical Center, in Jackson, Mississippi. “Patients get lost [in this] huge hand-off.” Witt, who sees both pediatric patients and adults in her practice, discussed the transition to adult health care during a session at the 2024 MDA Clinical and Scientific Conference in Orlando, Florida. The speaker noted that young adults with NMDs undergo more than a mere transfer of care. This process is defined as the purposeful and planned movement from pediatric to adult health care services that often begins in early adolescence and continues into young adulthood.

Young adults with NMDs must overcome different obstacles to make a successful transition from pediatric to adult health care providers. Common barriers include the reluctance to switch from a trusted to an unknown provider, limited access to new providers, insurance coverage, ability to self-manage the disease, and the negative connotations associated with adult care. Creating a transition plan can help manage the expectations of patients and their families, address some of the most common obstacles, and ultimately ensure a seamless transition.

Pediatric providers who manage adolescents with NMDs can help their patients build relationships with their adult care providers by facilitating introductions before the transition in care occurs, either through visits or joint clinics. “Patients need to connect with adult providers that take their insurance, have the appropriate skill [to] care [for them], and hopefully have some kind of personality connection with them,” Witt said.

While there is no ideal age for the transition to adult neuromuscular health care, pediatric providers may start preparing patients for this process as early as 12 to 14 years of age by discussing options and expectations and answering questions. Transition and related issues, including planning for education, employment, and medical needs, should be discussed on an annual basis starting in the early- to mid-teens. Ongoing communication about the transition process and modeling a positive attitude can help young adults gain the confidence to take the next step in their therapeutic journey, Witt noted. Pediatric providers may also schedule tours of adult health care clinics and link patients to peer support.

When it comes to improving access to care, social workers and other allied professionals such as patient navigators may play an invaluable part in helping patients transition from the status of “disabled child living at home” to “disabled individual.” Social workers may also assist young adults with continuity of insurance and finding financial support.

As they prepare their patients for the next stage, providers should ensure that transitioning young adults have an optimized treatment plan for their NMDs, which may include enlisting a multidisciplinary team to care for the young adults and providing equipment that may be more difficult to obtain after age 18 or 21. When adolescents approach the point of transition to adult health care, their ability to manage their symptoms, medications, and appointments should be assessed to determine whether they would benefit from independence or may require transition to conservatorship.

Without an adequate transition plan, individuals with NMDs are likely to experience delays in receiving adequate care, which leaves them vulnerable to complications, declining health, increased hospitalizations and visits to the emergency department, and psychosocial distress.

Adult providers who take over the patients’ care also have a role to play in completing the transition. Initial visits should include adequate time with the patients to establish a relationship and ensure that their questions are answered. “Talk to the patient, not the parent,” Witt said. “Find out personal interests and address any fears head on.” Moreover, multidisciplinary providers should become part of the team to avoid any gaps in care. “Medical transition is not the only transition at this age,” the speaker added. “Mental health is a challenge. Remember to advocate counseling and support.” In addition to professional help, interactions with peers can provide the support that young adults with NMDs need as they learn how to advocate for themselves and manage their own care.