The Patient’s Perspective on Chemoradiation for Anal Cancer: Evaluation of Expectations and Stigma

Abstract

While the efficacy and toxicity of chemoradiation (CRT) for anal cancer have been well studied, little is known about how actual patient experience compares with initial expectations. Although studies have suggested stigma associated with anal cancer screening, whether stigma impacts patients after treatment remains unclear. Consecutive patients with squamous cell carcinoma of the anus treated with definitive CRT from 2009-2018 who were without recurrence and with ≥6 months of follow-up were surveyed. The survey assessed patients’ baseline knowledge and fears regarding CRT and asked them to compare their short-term and long-term side effects with initial expectations. Levels of stigma were evaluated by asking patients the degree to which their diagnosis impacted personal relationships. Questions were adapted from validated scales including the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and Discrimination and Stigma Scale. We surveyed 46 patients, of which 33 responded (response rate 72%). The median age was 66 years (range 54-88); 61% were female and 12% were HIV positive. The stage distribution was 15% stage I, 33% stage II, and 52% stage III. All patients underwent intensity-modulated radiation therapy (median total dose 54 Gy, range 48.6-59.4 Gy) with the most common chemotherapy 5-fluorouracil/mitomycin C (94%). Median follow-up at survey was 30.0 months (range 6.2-116.5). Prior to treatment, 73% of patients indicated little to no knowledge of CRT, with most commonly top ranked fears including skin burns (12%), organ damage (11%), and need for a stoma (11%). Seventy percent reported overall short-term effects to be worse than expected, with changes to bowel habits (82%), energy (73%), and interest in sexual activity (64%) most commonly rated as worse than expected. Thirty-nine percent reported overall long-term effects to be worse than expected, with changes to bowel habits (73%), sexual function (67%), and interest in sexual activity (58%) most commonly rated as worse than expected. However, 94% agreed they were better off after treatment, and only 24% indicated CRT was scarier than expected. Regarding stigma, a subset reported hiding their diagnosis (12%, 24%) and side effects (24%, 30%) from friends/family or work colleagues, respectively, with 15% indicating they stopped themselves from having a close relationship due to concerns over how others might respond to their diagnosis. Although patients’ perceptions of the severity of short-term CRT side effects were inferior to expectations, the vast majority agreed they were better off after treatment. Targeted counseling on common concerns may improve the anal cancer treatment experience. A notable subset reported stigma associated with treatment, warranting further evaluation to understand the impact on the patient experience.