Health Disparities in Lived Experiences of Patients with Cutaneous T-Cell Lymphoma: An All of Us Database Analysis

Background and Aims:

Primary Cutaneous T-cell Lymphoma (CTCL) is a rare lymphoma that can be associated with significant morbidity and mortality. Despite advancements in the understanding and treatment of CTCL, there remains a scarcity of comprehensive and accessible data from patients with this disease, particularly among those from backgrounds underrepresented in research. The National Institute of Health’s All of Us Research Program is a longitudinal cohort study using multisource data from over 800,000 participants, of whom the majority are members of underrepresented communities. This study aims to evaluate the All of Us database as a tool for improving our understanding of CTCL and identifying disparities faced by patients from diverse backgrounds.

Methods:

Using the All of Us Controlled Tier Dataset v7, we included patients with electronic health records (EHR) data with a condition code of primary cutaneous T-cell lymphoma. Participants were defined as having mycosis fungoides (MF) if their chart contained condition codes for primary cutaneous T-cell lymphoma and mycosis fungoides and did not contain condition codes for Sézary syndrome (SS). Data from electronic health records, surveys, and genomic data was analyzed using RStudio in the All of Us cloud environment on the Researcher Workbench. Participants that skipped individual answers to survey questions were included in the percentage denominators during analysis. Intergroup comparisons were made using chi-square testing with statistical significance set at p<0.05.

Results and Discussion:

There are 380 patients in the All of Us database with primary cutaneous T-cell lymphoma. Among these, 215 patients have MF, and 49 have SS. Seventy-three patients were found to have lymph node involvement with either MF or SS. Among all CTCL patients (n=380), 47% are female and 51% are male as defined by sex at birth. Forty-seven percent identify as white, 31% identify as Black or African American, and 16% identify as Hispanic/Latinx. Among those with CTCL, 252 (66%) are also diagnosed with inflammatory dermatosis. Over a third (35%) of patients with both conditions were first diagnosed with CTCL more than a year after being diagnosed with inflammatory dermatosis, and 19% of patients received a CTCL diagnosis more than four years after diagnosis with inflammatory dermatosis.

Patient-reported outcomes revealed that 39% of respondents with CTCL (n=380) considered their general health to be either “fair” or “poor.” Similarly, many CTCL patients rated their physical health (36%), quality of life (19%), and mental health (15%) as either “fair” or “poor.” Analysis of specific symptoms revealed potential contributors to diminished quality of life, with over a fourth (27%) of respondents with CTCL rating their average pain in the last 7 days as a 6 or higher out of 10, and 41% of patients reporting “moderate,” “severe,” or “very severe” fatigue in the last week. Importantly, these patient-reported outcomes differed significantly based on demographic factors, including race. When comparing Black (n=118) and white (n=174) patients with CTCL who completed a survey on their health, Black patients with CTCL were more likely to rate their experience as “fair” or “poor” regarding their general health (53% vs 26%), physical health (47% vs 28%), quality of life (24% vs 12%), and mental health (20% vs 9%). Among Black patients, 47% reported experiencing “moderate,” “severe,” or “very severe” average fatigue, and 39% rated their average pain as 6 or higher in the past week, compared to 33% and 16% of white patients, respectively. Notably, these trends exist despite similar rates of SS among white (16%) and Black (11%) participants. Exploring the structural inequalities affecting patients of color revealed potential underlying mechanisms contributing to disparate experiences of patients with CTCL. Among 100 CTCL patients who shared their perceptions of healthcare experiences, 42% of Black patients (n=24) felt that their healthcare providers did not listen to their concerns during visits, compared to 14% of white patients (n=76), a significant difference (p<0.05). The All of Us database proved to be a useful tool in understanding the lived experience of patients with CTCL, highlighting disparities faced by patients with skin of color.