Advances in treatment and care mean more ventilator-assisted children are living into adulthood, so more patients than ever are transitioning into adult care.
Respiratory Care – Bridging the Gap: Pediatric to Adult Transition for Home Mechanical Ventilation examined the barriers these patients face and ways the adult clinic can facilitate a smooth transfer into a new care situation. The session is available for viewing on the virtual CHEST 2020 meeting platform through February 1, 2021, for registered attendees.
Sherri Katz, MD, CM, FRCPC, FCCP, opened the session with a look at the specific barriers that impede these critical transitions in care.
“Transition of care is a process, not a one-time event,” said Dr. Katz, pediatric respirologist, chief in the division of respiratory medicine and associate professor at Children’s Hospital of Eastern Ontario, University of Ottawa.
Dr. Katz said that most care programs lack a formal transition process. In addition, many care guidelines do not offer clear recommendations or advice, so the process and the infrastructure vary widely from program to program.
A successful transition program builds on the concept of developing patient autonomy, when appropriate for the individual’s abilities, Dr. Katz said. The other critical needs for a quality program are robust peer and navigator support, planning, and information.
Pi Chun (Jennifer) Cheng, MD, MS, said that successful transition revolves around information; open communication between the young adults, their caretakers, and their medical teams; and individual planning to ensure optimal health and quality of life.
“The overarching goal, remember, is to maximize the autonomy of young adults by encouraging them to be assertive in managing their care and making informed decisions about their treatment plan,” said Dr. Cheng, assistant professor of pediatrics in the division of pulmonary and sleep medicine at Children’s Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania.
Dr. Cheng said that lessons learned about the transition to young adulthood among cystic fibrosis patients need to be applied to those with chronic diseases requiring ventilation. She highlighted six core transition elements:
- Develop a transition policy.
- Establish a registry to track transition progress.
- Conduct routine transition readiness assessments and develop transition goals.
- Prepare for transition by addressing needs and barriers, and identify adult providers and discuss transition timing.
- Establish transfer of care appointments with the adult care providers and provide adult providers with a complete medical summary.
- Communicate with the patient and adult care provider to get feedback.
Sharing the perspective of an adult care provider, Jason Ackrivo, MD, MSCE, detailed the basics adult care providers should focus on during these care transitions.
Dr. Ackrivo, instructor of medicine in the department of medicine, pulmonary, allergy, and critical care division at the Perelman School of Medicine at the University of Pennsylvania, noted that those requiring mechanical ventilators are medically complex patients who require a multidisciplinary approach. He shared examples from his clinic’s transition program.
“A timely and welcoming introduction can really improve the process for the patient and their caregivers,” he said. “Remember, there is a lot of anxiety regarding transition, so you want to anticipate that and ensure that they feel safe coming over.”
Clinicians also need to familiarize themselves with several positive pressure devices to prevent gaps in care, Dr. Ackrivo said. And a strong, trusting relationship with one or two DME companies will pay off in the long term.
Julie Boyer Hanley, MSN, BSN, GNP-C, APRN, adult assisted ventilation clinic, division of pulmonary and critical care medicine at Michigan Medicine, discussed the unique psychosocial needs for patients who require ventilation and the importance of coordinated care to meet those needs.
In addition to the medical challenges, young adults requiring assisted ventilation also have the same challenges all young adults face in regard to burgeoning independence and developing peer relationships and intimacy as they grow older, Hanley said. For example, once patients needing assisted ventilation age out of school, they can lose a critical touchstone for building and maintaining social connections, and there is a lack of programs available to young adults to foster these social connections.
During the time of transition to adult care, providers need to address privacy issues that relate to independence and talk with patients about who they want to be involved in their care, get those documents, and be respectful about whom to involve. Also, Hanley said, the care team cannot shy away from sensitive topics such as intimate relationships and drug use. To achieve that, make sure to involve multidisciplinary partners and know a variety of resources that are available to make the care process better.
“Care coordination is essential. They have a lot of high needs, and anything we can do to make their access to care easier really pays off,” Hanley said.