Help shape better transition support: ISHLT survey for young adult heart and lung transplant recipients and caregivers

TFAdmin
1 day ago
2 min read

If your child received a heart or lung transplant as a kid, you already know that growing up with transplant is not a straight line. At some point, the questions change. Communication changes. Independence grows. The medical team changes. And for many families, the transition from pediatric to adult care can feel like a whole new chapter to navigate.

The International Society for Heart and Lung Transplantation (ISHLT) Pediatric to Adult Transition Taskforce, in collaboration with Ann & Robert Lurie Children’s Hospital, is conducting a short survey to better understand what young adult recipients and caregivers need during transition and transfer. If this applies to your family, your voice can help shape better support for the next generation.

Who this survey is for

You may be eligible if you are:

A young adult who received a heart or lung transplant at a pediatric transplant center and you are over 18 years old, or
A parent or caregiver of a person who received a heart and or lung transplant at a pediatric transplant center.

What the study is trying to learn

The survey aims to better understand:

How young adult recipients and caregivers gather information
How they communicate with the transplant medical team
What transition and transfer experiences have been like

What to expect

Participation is voluntary and responses are confidential
The survey takes less than 8 minutes
Patients can take the survey in English or Spanish

Take the survey

Use this link to begin: redcap.link/ISHLTPatientandCaregiverSurvey

Deadline: Thursday, 12 March

Questions

ISHLT Pediatric to Adult Transition Taskforce ChairsFor questions about ISHLT’s involvement or survey distribution:

Melissa Cousino: melcousi@med.umich.edu
Miranda Paraskeva: m.paraskeva@alfred.org.au

Ann & Robert Lurie Research Team (Study Sponsor)For questions about study purpose, survey content, or data use:

Erika Mejia (Patient and Caregiver Survey Lead): ermejia@luriechildrens.org

This study is Lurie Children’s IRB #Study00000814. Title: Survey of Heart and Lung Transplant Recipients and Caregivers Regarding Transition to Adult Programs and Communication Preferences. Principal Investigator: Erika Mejia, MD MSCE. The content of this communication has been approved by the Lurie Children’s IRB.

Thank you for helping improve transition support for young adults and families. Your experience matters.