ABSTRACT
Illness perception describes patient’s internal beliefs about their illness and their resulting psychosocial impact. This concept is important because it can give healthcare providers a tool to identify issues that may need to be addressed with their patients. However, very few studies have looked into illness perception in cutaneous T-cell lymphomas (CTCLs). CTCL is a chronic, and at times debilitating group of malignancies that can have an indolent but remitting course. Treatment options can also be burdensome to the patient. It is therefore important to gain an understanding of not only what CTCL patients believe about their disease but also how those beliefs impact their quality of life (QOL). Moreover, the current COVID-19 pandemic offers a unique opportunity to investigate how significant disruptions in access to healthcare have impacted illness perception and QOL. The objectives of this study are to identify disease understanding in patients with CTCL, to investigate the impact additional education modalities has on disease understanding, and whether disparities exist between specific groups of patients. We also hope to determine how the COVID-19 pandemic impacted healthcare-related QOL. CTCL patients, above the age of 18, are recruited for this study. Patients are given an electronic survey containing the Illness Perception Questionnaire-Revised (IPQ-R), Skindex-29, FACT-G7, and selected questions based on the Household Pulse survey to assess COVID impact on QOL. Patients are then randomly selected to view an educational CTCL PowerPoint, in addition to verbal education routinely given during their visit. Follow-up responses to these questions will be collected at 2 and 6 months after the initial survey. In this ongoing study, we anticipate a sample size of 100 patients. The outcome of this study will provide insight into the use of additional educational modalities to better patient understanding of CTCL, with the goal of clearing common patient misconceptions about the disease, improve educational resources, and identify actionable paths to diminish obstacles to their access to care.