Share this Survey on Patient/Caregiver Experience in Pediatric to Adult Transition of Care
ISHLT members are invited to share information with their patients regarding a study conducted by the ISHLT Pediatric to Adult Transition Taskforce in collaboration with Ann & Robert Lurie Children’s Hospital. The study aims to better understand how young adult transplant recipients who received a transplant as a child and their caregivers/parents gather information and communicate with the transplant medical team. We also hope to learn about their transition and transfer experiences.
Participants must be:
- A patient who has received a heart/lung transplant at a pediatric transplant center AND you are > 18 years or older
- A parent/caregiver of a person who has received a heart and/or lung transplant at a pediatric transplant center.
Participation is voluntary and responses are confidential. The survey should take less than 8 minutes to complete.
To Participate
Share this link with your patients or click the button below to begin the survey:
https://redcap.link/ISHLTPatientandCaregiverSurvey
Take the Survey
Patients can select to take the surey in either English or Spanish.
The deadline to complete the survey is Thursday, 12 March.
Your participation in distributing this survey is greatly appreciated, and we thank you for your time and contributions to ISHLT’s mission of improving the lives of patients with advanced heart and lung disease.
Melissa Cousino, PhD
ISHLT Pediatric to Adult Transition Task Force Co-Chair
Miranda Paraskeva, MBBS, MPH
ISHLT Pediatric to Adult Transition Task Force Co-Chair
Erika Mejia, MD, MSCE
ISHLT Pediatric to Adult Transition Task Force Patient/Caregiver Survey Lead
Who to Contact with Questions
- International Society for Heart and Lung Transplantation (ISHLT) Pediatric to Adult Transition Taskforce Chairs
For questions about ISHLT’s involvement or survey distribution.
Melissa Cousino
Email: melcousi@med.umich.edu
Miranda Paraskeva
Email: m.paraskeva@alfred.org.au - Ann & Robert Lurie Research Team (Study Sponsor)
For questions about the study purpose, survey content, or data use.
Erika Mejia (Patient and Caregiver Survey Lead)
Email: 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.