Addressing Health Literacy with a Tailored Survivorship Care Plan to Improve Access in Underserved African American Prostate Cancer Patients
Abstract
Scientific Objective: Deliver a tailored survivorship care plan with an educational supplement that explicitly addresses health literacy to enhance understanding of survivorship care recommendations for a group of underserved African American prostate cancer survivors. Rationale: African American men are disproportionately affected by prostate cancer, with a 2.2-fold increased mortality compared to white men. Research has shown a crucial link between health literacy and prostate cancer outcomes that influences the increased cancer mortality among African American men. At least two investigations have documented the association between lower health literacy and African American race with more advanced stage of prostate cancer at diagnosis. Health literacy remains an issue after prostate cancer diagnosis as well. Our preliminary data among newly diagnosed prostate cancer patients has shown that only 23.4% of patients understand their treatment options after meeting with their providers and that understanding is correlated with health literacy. Qualitative data among prostate cancer survivors suggest that poor health literacy has an adverse influence on survivorship when patients have treatment side effects that they do not understand and did not anticipate. Our preliminary studies have established that health literacy includes more than reading skills. Published data from interviews of 105 low-income African American men reveal the full scope of health literacy barriers that prevent underserved men from understanding prostate cancer treatment choices and side effects. The men had a median reading level of fourth to sixth grade, with 27% reading at less than a third grade level. Fewer than 50% knew the medical terms “erection” or “impotent”; 5% understood the term “incontinent”; and 25% understood the term “bowel habits.” Math skills and anatomic knowledge were also poor. Just 30% could calculate a simple percent; 22% could locate the prostate in an anatomic diagram; 65% could locate the bladder; and only 3% knew that race was a risk factor for prostate cancer. To address these barriers, the study team will use real-time health literacy assessment to tailor a survivorship care plan (SCP) and an educational supplement to augment the information patients receive from their oncology provider with a standard SCP. The supplement does not rely on a patient’s reading skills or math skills. Patients are allowed to choose between colloquial terms or medical terms to discuss genitourinary function. Icons are used to explain treatment side effects using the patient’s preferred terms. Anatomy is explained using the patient’s preferred terms and an anatomic model. In preliminary research, a similar educational supplement has successfully improved understanding of prostate cancer treatment and side effects in over 150 newly diagnosed African American prostate cancer patients. We propose to combine the educational supplement with a tailored SCP as patients complete their cancer treatment and make the transition to cancer survivor. We will randomize patients to a standard SCP compared to a standard SCP with tailoring and an educational supplement that are adapted for the individual patient’s health literacy. We will explore how patients understand a standard SCP and whether we can improve their comprehension by explicitly addressing their health literacy with tailoring of the SCP. Applicability: Results of the proposed investigation are applicable to early-stage, African American prostate cancer patients with low literacy skills who have completed their cancer treatment and are transitioning to cancer survivorship. We hypothesize that low literacy tailoring of the SCP will increase access to survivorship care by improving patient understanding of long-term side effects and cancer surveillance testing. Consequently, tailoring the SCP should have an immediate benefit for cancer survivors and directly meet the O
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 05, 2021
- Source ID
- W81XWH2110098
Entities
People
- Kerry L Kilbridge
Organizations
- Dana–Farber Cancer Institute
- United States Army