Originally published as JCO Early Release 10.1200/JCO.2008.17.3468 on March 23 2009

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Lack of Comprehension of Common Prostate Cancer Terms in an Underserved Population

From the Massachusetts General Hospital, Boston, MA; University of North Carolina at Chapel Hill, Chapel Hill, NC; University of Virginia, Charlottesville; School of Public Health, Class of 2007, Central Virginia Community Health Center, New Canton, VA; Jesse Brown Veterans Administration Medical Center, Chicago, IL; Washington University; Express-Scripts, St. Louis, MO; MetroHealth Medical Center, Cleveland, OH; and University of Toronto, Toronto, Canada.

Corresponding author: Kerry L. Kilbridge, MD, MSc, Massachusetts General Hospital, General Medicine Unit, 50 Staniford St, 9th Floor #955, Boston, MA 02114; e-mail: kkilbridge{at}partners.org.

Purpose To assess the comprehension of common medical terms used in prostate cancer in patient education materials to obtain informed consent, and to measure outcomes after prostate cancer treatment. We address this issue among underserved, African-American men because of the increased cancer incidence and mortality observed in this population.

Patients and Methods We reviewed patient education materials and prostate-specific quality-of-life instruments to identify technical terms describing sexual, urinary, and bowel function. Understanding of these terms was assessed in face-to-face interviews of 105, mostly African-American men, age 40, from two low-income clinics. Comprehension was evaluated using semiqualitative methods coded by two independent investigators. Demographics were collected and literacy was measured.

Results Fewer than 50% of patients understood the terms "erection" or "impotent." Only 5% of patients understood the term "incontinence" and 25% understood the term "bowel habits." More patients recognized word roots than related terms or compound words (eg, "rectum" v "rectal urgency," "intercourse" v "vaginal intercourse"). Comprehension of terms from all domains was statistically significantly correlated with reading level (P < .001). Median literacy level was fourth to sixth grade. Prostate cancer knowledge was poor. Many patients had difficulty locating key anatomic structures.

Conclusion Limited comprehension of prostate cancer terms and low literacy create barriers to obtaining informed consent for treatment and to measuring prostate cancer outcomes accurately in our study population. In addition, the level of prostate cancer knowledge was poor. These results highlight the need for prostate cancer education efforts and outcomes measurements that consider literacy and use nonmedical language.

Supported by Grant No. DAMD17-00-1-0106 from the Congressionally Directed Medical Research Program in Prostate Cancer at the Department of Defense, Grant No. KO7CA085754 from the National Cancer Institute, and the Mellon Prostate Cancer Institute at the University of Virginia. The content is solely the responsibility of the authors and does not necessarily reflect the official views of the Congressionally Directed Medical Research Program, the National Cancer Institute, the National Institutes of Health, or the Mellon Prostate Cancer Institute.

Presented in abstract format at the 37th and 42nd Annual Meetings American Society of Clinical Oncology, May 12-15, 2001, San Francisco, CA and June 2-6, 2006, Atlanta, GA.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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