ABSTRACT
It is well known that the COVID-19 pandemic caused significant treatment delays for dermatology patients, and recent studies demonstrate poor outcomes for patients with cutaneous T-cell lymphoma (CTCL) during this time. However, not much is known about patient reported delays in management of this condition following the pandemic. This study sought to evaluate patient-reported illness anxiety and delays in management of CTCL. Fifty-two CTCL patients were recruited from clinic from October 2020 to October 2021. Patients were asked to complete a 22-question survey adapted from the United States Census Household Pulse Survey. Control data was extrapolated from published national data from the Household Pulse Survey. Of 52 patients surveyed, 28 were male (59.6%). 25 identified as white (54.3%), 18 as Black (39.1%), 8 as Asian (15.3%) and 1 as Native American (2.2%). Average age was 57 years, age range 24-89 years. Results demonstrate that 32.6% (n=15) of respondents had a household member experience loss of employment since March 2020 compared to 39.6% of the US population. 46.8% of respondents vs. 32.3% US population noted some level of difficulty in paying for household expenses including medical care. Only 4.3% of respondents noted that they delayed receiving medical care due to the coronavirus pandemic. When compared to the US population (59.8%), a lower proportion of respondents (48.9%) noted symptoms of nervousness or anxiety over the past week. 27.7% of respondents vs. 46.1% of US population reported feelings of hopelessness or depression over the past week. These results demonstrate a low number of patients reporting care delays, possible due to the interval when data was collected, several months after COVID-19 onset. It is also possible that telehealth contributed to lessening delays in care. Overall, the results of this study reinforce the significant physical, financial, and emotional impact of CTCL on the daily lives of patients, and the heightened impact of COVID-19 on this population.Copyright © 2023
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.