Developing and Adapting an Instrument to Measure the Impact of the COVID-19 Pandemic on Pediatric Hematology and Oncology Patients and their Families
Name: Luisa Nilan
School: Vagelos College of Physicians and Surgeons, Class of 2023
Mentor: Manuela Orjuela-Grimm, MD, ScM
Abstract
This study is part of a larger study that is intended to collect retrospective and prospective data in order to understand how COVID-19 has affected pediatric and young adult hematology, oncology, and stem cell therapy patients and their families. Although supportive care of these immunosuppressed patients has been impacted by changes to everyday life, and by the challenges that their families have undergone, there are currently few to no guidelines on how to manage the care of these patients during this infectious epidemic. This sub-study specifically aims to document potential challenges and exposure-related risk factors for these immunocompromised patients and their families, in addition to the pandemic’s impact on aspects of their daily life which may impact patients' ability to receive cancer care. I helped to develop and adapt an instrument to measure these effects on an ethnically and sociodemographically diverse study population. The steps involved included helping to adapt a survey taken from multiple instruments, which was then adapted to work in both English and Spanish for a low literacy population for whom English or Spanish might not be their first language. The adaptation involved extensive piloting with other multiethnic and multidisciplinary team members and research assistants experienced in working with other low literacy populations. Once the study launched, the research team continued to add minor adaptations. The resulting data may inform the multidisciplinary care of pediatric cancer patients by helping to better understand exposure risks. This will hopefully help improve patients' cancer care outcomes and support families’ needs.