Patient-reported outcomes: The anal cancer patient lived experience.

Abstract

2 Background: Anal Cancer incidence and deaths from the disease have been rising in the United States for the past two decades. Data published in the Journal of the National Cancer Institute (11/19/2019) indicate from 2001 to 2015, anal cancer overall incidence increased by 2.7% per year and deaths rose by 3.1 % each year. This data indicates that anal cancer may be one of the fastest growing causes of cancer incidence and mortality. Now, especially with data indicating the rise in incidence rate, it is imperative that the anal cancer patient lived experience be better understood, including gaps in awareness and prevention education that may lead to earlier diagnosis. The Raymond Foundation in partnership with the anal cancer patient community is amplifying the patient voice by facilitating a series of impactful roundtable conversations to underscore the patient lived experience. Methods: From March–August 2021, the Raymond Foundation convened virtual roundtable conversations and individual interviews with 171 anal cancer patients and survivors. Overarching themes from our conversations included: Barriers to earlier diagnosis and awareness, Frustration and anger by the lack of new treatment protocols, Quality of life after diagnosis, including daily distress levels leading to allostatic load. Results: 94% of patients/survivors reported lack of anal cancer awareness and prevention education that may have led to a later stage diagnosis; 93% reported feeling stigmatized with a marked decrease in quality of life post diagnosis; 90% reported feeling embarrassed when discussing their diagnosis with family and friends; 86% reported frustration and anger by the lack of new treatment options; Anxiety (81%), Fear (78%) Depression (73%) were common daily distress concerns; Reported physical effects of the disease and treatment, include Radiation Proctitis (71%) Fecal Incontinence (68%) Urinary Incontinence (65%). Less than half (44%) of patients felt empowered and comfortable advocating for themselves regarding their healthcare and treatment decisions. Conclusions: Anal cancer patients have many unmet needs–both physical and psycho-social. Their voices and lived experiences provide a roadmap to better understand these unmet needs. Based on our patient-reported outcomes research, we will continue our outreach and partnership with the anal cancer community to provide patient support, education and awareness programs and campaigns that help meet the needs of the anal cancer patient community.