Expert Insights

Expert Insights

Helping Patients Transition From Pediatric to Adult Care

Helping Patients Transition From Pediatric to Adult Care
19 May 2021

About 70% of rare diseases start in childhood. As treatments have advanced, many people diagnosed with a rare disease live well into adulthood. When you run a clinical trial that lasts several years, many participants will transition from pediatric to adult care. How do you support this transition of care?

The shift from a coordinated care team to a fragmented group of specialists is one of the top challenges for patients as they transition to adult care. As a kid, a parent or parents usually managed their care with the help of a pediatrician/principal investigator. As an adult, they make their own decisions, which can overwhelm a young adult.

Develop a Patient-Centric Transition Plan

Anticipating and addressing transition-related challenges requires a transition plan. That plan should start with a discussion between the caregivers, the investigator, and the child at around age 13 or 14.

Researchers must also consider the patients’ needs as they move into adulthood. As they graduate high school, start college, and manage jobs and social lives, they may not have as much time to participate in clinical trials. Make it easy by using telemedicine, bring your own device (BYOD) strategies, and other solutions to keep patients engaged and enrolled.

Patient education — the responsibility of the CRO — should be customized for different age groups. Physician education also helps ease the transition. Encourage investigators to develop transition plans for each study participant.

Empathy also goes a long way toward improving patient compliance and engagement. Help patients find ways to cope and overcome stigma. If possible, connect young adult patients with support groups, online forums, and other communities where they can connect.

As rare disease patients transition to adulthood, the parents also need support. Videos of teens talking about how they successfully took ownership of their disease and treatment can help parents understand what their child may be going through.

For an in-depth look at how clinical trial sponsors and CROs can help rare disease patients transition from pediatric to adult care, download our guide: “Living With a Rare Disease: The Transition From Pediatric to Adult Care During a Clinical Trial.”

x

Submit RFI / RFP

By submitting your information to us through this webform, your business details will be added to our database. In accordance with our Privacy Notice, we may then contact you with marketing information about Synteract that might be of interest to you. We will never sell your details to third parties. You can unsubscribe from marketing communications at any time.

Required

x

Contact Synteract

Tell us how to stay in touch with you:

By submitting your information to us through this webform, your business details will be added to our database. In accordance with our Privacy Notice, we may then contact you with marketing information about Synteract that might be of interest to you. We will never sell your details to third parties. You can unsubscribe from marketing communications at any time.

Required

x

 

x

 

x

Download Resource

By submitting your information to us through this webform, your business details will be added to our database. In accordance with our Privacy Notice, we may then contact you with marketing information about Synteract that might be of interest to you. We will never sell your details to third parties. You can unsubscribe from marketing communications at any time.

*Required

x

To complete your download, please choose an option in the Internet Explorer pop-up window at the bottom of this browser.

x

Download Resource

By submitting your information to us through this webform, your business details will be added to our database. In accordance with our Privacy Notice, we may then contact you with marketing information about Synteract that might be of interest to you. We will never sell your details to third parties. You can unsubscribe from marketing communications at any time.

*Required

x

To complete your download, please choose an option in the Internet Explorer pop-up window at the bottom of this browser.

x

Opt In

By submitting your information to us through this webform, your business details will be added to our database. In accordance with our Privacy Notice, we may then contact you with marketing information about Synteract that might be of interest to you. We will never sell your details to third parties. You can unsubscribe from marketing communications at any time.

*Required