About this study
Some children and teens who have had bone marrow transplants (also known as stem cell transplants) may develop a long-term side effect called chronic graft-versus-host disease (cGVHD). GVHD happens when the donated cells (the graft) see the recipient’s body (the host) as foreign and attack healthy tissues. GVHD can affect different parts of the body, including the skin, liver, and digestive system. This condition can last for years (be chronic) and make daily life more difficult.
This study aims to create a special survey called "The Pediatric cGVHD Symptom Scale." This scale would help doctors understand how much cGVHD symptoms bother children and teens. Right now, the available surveys are made for adults, but children and teens may describe their symptoms differently.
Another part of the study is to make a caregiver survey. This will help parents and other caregivers share how cGVHD symptoms affect their child. Our goal is to improve how we measure and understand these symptoms in younger patients.
The study is divided into 2 projects, with Project 1 complete and Project 2 ongoing:
Project 1 focused on testing and improving the survey. Patients with cGVHD filled out a survey about their symptoms, physical health, and emotions. The survey was worded correctly for their age so that they could understand it. Parents completed a separate survey. Then, the patient talked with a scientist about whether the questions were easy or hard to understand. We also interviewed patients and their caregivers together to get more feedback.
Project 2 uses the improved survey. Patients and caregivers will fill out the final version, along with other surveys about quality of life. They will complete these surveys online at 3 different times to track changes over time.
Eligibility overview
- Patient is age 5–17 (Project 1) or 8–17 (Project 2)
- Patient is receiving treatment for cGVHD after a stem cell transplant
- Adult caregiver of the patient