Retrospective Review of Quality of Life Instrument for Pediatric Vascular Malformations
Mentee
Carolena Steinberg, BA
Albert Einstein College of Medicine
Mentor
Joyce Teng, MD, PhD
Stanford University
Overview
Vascular malformations are a lifelong disease that are challenging to comprehensively measure how they impact the quality of life of patients. There is currently no tool that can directly measure this. We hope to create a patient survey that gives statistically reproducible results of measurements of the quality of life of children with vascular malformations. The items addressed in the survey have been determined to be important by patients with vascular malformations or their parents. The purpose of this study is to create a tool which can measure the impact vascular malformations have on the quality of life of children. We hope this will provide better care and treatment for these patients.
Status
This project was funded through a 2024 PeDRA Emerging Investigator Research Grant.
