Navigating the Health Care Shift

Transitioning From Pediatric to Adult Providers

Pediatricians and pediatric specialists can feel like part of the family, especially for children with medical complexities or special needs. For many reasons, when young people reach age 18, it can sound scary to move to adult practitioners.

There is no required age that patients must move from pediatric to adult healthcare. Most pediatric providers develop policies about when the transition to adult healthcare will begin. Many factors come into play, including the young person’s developmental stage, severity of their diagnoses, and current prognoses. Some locations will see patients beyond their 18th birthdays and into their 20s.

Parents or guardians are able to stay involved in the care of their young adults to the extent their youth want or need them to. Parental involvement can include attending appointments with their young adults while taking on more of a background role. Parents might shift to only speaking up when needed, for example, to assist with recalling medical history. Young adults with intellectual and developmental disorders could require greater parental involvement, such as supported decision-making or guardianship. Parents can also execute healthcare power of attorney forms with their adult children.

SUGGESTIONS FROM MEDICAL PROFESSIONALS

The transition from pediatric to adult care is a crucial milestone for all youth.“Every pediatric patient will eventually need to move from pediatric to adult care providers,” said Veenod Chulani, MD, who heads Phoenix Children’s Hospital’s Adolescent Medicine program. “A well-timed transition from child- to adult-oriented healthcare is specific to each youth and ideally occurs between the ages of 18 and 21 years.”

The American Academy of Pediatrics advises that parents and providers begin initial discussions regarding healthcare transition when their children reach 12 to 13 years of age and initiate a jointly developed healthcare plan with youth and their parents beginning at age 14 to 15. However, it’s important to consider not only an individual’s chronological age but also their developmental stage, Chulani added.
“Young people vary significantly in their maturity and ability to take on responsibilities,” he said. “Some youth may not receive their chronic illness diagnosis until their mid to late teenage years and could need additional support managing their health conditions. Youth with more complex medical needs or those seeing multiple specialists may require additional support during this transition period.” He encourages parents to partner with providers to help teens progressively build self-advocacy skills and optimize their abilities to assume responsibility for their care.
Vicki Copeland, MD, FAAFP, medical director with the Division of Developmental Disabilities (DDD), is a parent of teens and a physician, so she can relate to the stress parents feel during the healthcare transition process. DDD provides support and therapies to individuals with qualifying diagnoses who meet specific criteria.

It’s important for parents and guardians to start locating adult providers as their young people approach adulthood, she said, because these providers will focus on adult healthcare needs and age-appropriate preventive care. Doctors must also practice standards of care, Copeland noted, which could preclude them from treating ages or conditions they aren’t familiar with or aren’t receiving continuing education for. Policies vary, but a pediatric physician’s malpractice insurance also doesn’t always provide coverage for practicing with adult patients.

If a family is able to move from within a system, such as from a pediatric specialist to an adult specialist within the same healthcare organization, medical records should easily transfer. If they move from one system to another, it’s a good idea to offer and bring as many medical records as possible. But don’t assume that the doctor will have a chance to fully review all documentation before that first appointment, Copeland said. Doctors don’t always have the opportunity to fully review records beforehand, and they might prefer to speak with a patient in person first.
When looking for a new provider, a good place to start is by asking a young person’s existing pediatrician or pediatric specialist for recommendations. “They will know what the family style is like,” Copeland said. “They’ll know if they want a new provider who is more direct or who offers more hand-holding.”

If the young person receives DDD services, parents could also ask their DDD support coordinator for suggestions, because the coordinator might work with other families who transitioned to adult providers. Individuals who receive nursing services can also ask their DDD district nurse for recommendations.

Finding the right fit can also include calling around and talking to staff from different offices or making new patient appointments. When making initial calls to inquire about practices, parents or patients could mention the diagnoses and ask how the office could accommodate them, Copeland said, such as wheelchair accessibility or sensory concerns. They can also ask how closely the doctor’s office works with specialists. Parents or patients might also want to ask about how often their child can see their assigned doctor and how frequently they might need to see a physician’s assistant or nurse practitioner.

Young people and their parents might also want to go to a few appointments before choosing a provider. “Try not to make your final decision about a provider during that first visit,” Copeland advised. “Unless something goes terribly wrong, give it a few visits. There can be a lot to cover and a lot of information that needs to be exchanged. Things could still work out well.”

Another consideration for choosing adult providers can include insurance coverage, which can often change for young adults. Most young people can stay on their parents’ private insurance until age 26 and possibly longer if they have certain diagnoses and meet other specific criteria. Contact your insurance provider for more information about this, if applicable. DDD and ALTCS-eligible individuals go through a redetermination process close to their 18th birthdays.

In addition to finding the right providers and developing self-advocacy skills for the patient, healthcare transition also involves learning how insurance and referrals work, filling and refilling prescriptions, and more. Got Transition is the national resource center on healthcare transition, available at https://www.gottransition.org/. The website offers tools including quizzes for parents and youth about their readiness, offering tips to help develop skills. See https://www.gottransition.org/resource/?hct-family-toolkit to access these tools.

PARENTS SHARE THEIR STORIES

Aimee Patton’s daughter has had numerous medical conditions and sees at least 10 specialists. As her daughter’s 18th birthday approached, Patton brought up transition with her doctor but was advised this wouldn’t happen until she was stable and a plan was established. Part of this plan included scheduling a meeting with her daughter’s current specialists and the adult practitioners she was considering.

Her daughter’s primary and palliative care specialist at Phoenix Children’s Hospital also put together a booklet that Patton’s daughter could share with prospective doctors so they’d understand her medical complexities but could review the information quickly instead of reading through thousands of pages of medical records. Patton is not aware whether other doctors do this, but parents could request something similar or put one together themselves if it sounds helpful.

Another scary prospect for their family was moving from Phoenix Children’s Hospital, with all specialists under one roof, to adult specialists from different organizations. This change didn’t happen right away but started in her daughter’s early 20s. Patton obtained healthcare power of attorney, which allows her to be present and speak up as needed at her daughter’s appointments. Her daughter is now 26 years old and sees all adult doctors, usually on her own.

“Once I saw her taking an interest in her care and she was not at a frightening stage, I’d try to empower her to speak up,” Patton said. “If the doctor asked me a question, I’d say let’s ask her. She didn’t always embrace that approach but as she got more well, I’d defer to her as much as possible.” This gave her daughter more experience with advocating and discussing her healthcare needs once she started seeing doctors on her own.

Patton mentioned a recent negative experience for her daughter with an adult ear, nose and throat specialist. They talked about what she didn’t like and how she could locate another provider. Over time, her daughter learned to listen to her instincts about different doctors and when to make changes.

Parents can start as early as appropriate with encouraging their children to speak to their doctors and ask questions during appointments. Parents can also encourage doctors to address their young people instead of speaking mainly to the parent or guardian.

Susie Turrey has guardianship of her son, and it was important to her to find providers who would listen and talk to her son and not just to her. She also asked his pediatrician when he should transition to an adult provider and was advised by about age 21. They started this process when he was about age 20. He has an autism diagnosis and is now 23 years old.

While his pediatrician’s office offered recommendations, she went with suggestions from a parent group. They tried one primary care doctor but didn’t feel it was a good fit. They tried a second provider and stayed there, finding a good fit overall.

“Rapport was important” in choosing a provider, she said. “Not every doctor would talk to my son. I don’t want to be locked out completely, but I wanted someone who would talk to him and be respectful of him.” Her son is communicative, and she is working with him to self-advocate and navigate doctors’ appointments and DDD meetings.

Turrey said referrals were one challenge with moving from pediatric to adult primary care. While pediatricians seem familiar with the information needed to refer to specialists, especially with DDD, Turrey didn’t see the same familiarity from adult primary care providers. Her son has private primary insurance and a secondary insurance plan through DDD, which requires specific referral processes. She’s found success with contacting the specialist first to gather the specific information needed and where to send it, then providing that information to the primary care doctor.

EFFORTS TO IMPROVE HEALTHCARE TRANSITIONS

Locally, Arizona healthcare leaders are participating in continuing education and other activities to help improve the healthcare transition process for young adults. This included a Healthcare Transition Summit held in Phoenix in December and regular meetings involving all healthcare systems in the state. Follow Raising Special Kids on social media, and we’ll provide updates as they become available.

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