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Commentary on Lack of comprehension of common prostate cancer terms in an underserved population
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B. Hollenbeck / Urologic Oncology: Seminars and Original Investigations 27 (2009) 571–581
Overall, 129 consecutive patients were evaluated. No significant differences were found between the baseline scores of our patients and age- and sex-matched normative data for the Italian general population. Comparing the baseline SF-36 scores to those at 6 months and 12 months, there was statistically significant worsening in the physical domains and improvement in the emotional domains (all P ⬍ 0.05). About 50%- to 80% of patients returned to baseline scores 6 months and 12 months after surgery. Age, body mass index (BMI), educational level, occupational status, New York Heart Association (NYHA) functional class, tumor mode of presentation, pathologic stage, size, and histologic subtype were associated with 6-month and 12-month return to the baseline HRQOL scores. The main limitation of the study was the lack of a disease-specific questionnaire. Most patients returned to preoperative HRQoL within 12 months after RN or NSS. Several patient features, clinical variables, and pathologic tumor variables predict the return of HRQOL.
Commentary Measuring the quality-of-life (QOL) after cancer surgery is an important component of providing quality cancer care. For cancers that are more chronic in nature (e.g., small renal cancers, some prostate cancers), QOL is an important consideration when deciding between the various treatment options and their tradeoffs. If you don’t measure it, you won’t improve it. With that in mind, this study uses a very general measure of health status to assess QOL before and after surgery for kidney cancer. Importantly, this study highlights two considerations when measuring QOL: ensure that your questionnaire assesses the themes that are important (i.e., if bowel related symptoms are common after surgery, your questionnaire needs to measure them); administer the questionnaire at intervals that will be helpful (i.e., if everyone is back to baseline at 6 months, you need to administer your questionnaire at intervals throughout the 6-month window). With these tenets of QOL measurement in mind, the efforts of you and your patients to identify opportunities to improve will be rewarded. doi:10.1016/j.urolonc.2009.06.013 Brent K. Hollenbeck, M.D., M.S.
Commentary on Lack of comprehension of common prostate cancer terms in an underserved population. Kilbridge KL, Fraser G, Krahn M, Nelson EM, Conaway M, Bashore R, Wolf A, Barry MJ, Gong DA, Nease RF Jr., Connors AF, Massachusetts General Hospital, General Medicine Unit, Boston, MA. J Clin Oncol 2009;27:2015–21 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. 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 ⱖ 40, from two low-income clinics. Comprehension was evaluated using semiqualitative methods coded by two independent investigators. Demographics were collected and literacy was measured. 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 (e.g., “rectum” vs. “rectal urgency,” “intercourse” vs. “vaginal intercourse”). Comprehension of terms from all domains was significantly correlated statistically with reading level (P ⬍ 0.001). Median literacy level was fourth to sixth grade. Prostate cancer knowledge was poor. Many patients had difficulty locating key anatomic structures. 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.
Commentary Most quality-of-life (QOL) questionnaires are constructed and validated in academic settings. Those that are rigorously vetted over time and in various patient populations can cost considerable sums to develop. However, even with the steps taken in the lengthy validation process, questionnaires may not always provide reliable and valid information if their content is misinterpreted by patients. This study raises significant concern about patient comprehension of terms widely used in many of the more commonly used questionnaires to assess QOL in prostate cancer. In particular, this study implies that these questionnaires may not be providing useful data when administered to an underserved population in whom disparities in outcomes are greatest. doi:10.1016/j.urolonc.2009.06.014 Brent K. Hollenbeck, M.D., M.S.
B. Hollenbeck / Urologic Oncology: Seminars and Original Investigations 27 (2009) 571–581
Overall, 129 consecutive patients were evaluated. No significant differences were found between the baseline scores of our patients and age- and sex-matched normative data for the Italian general population. Comparing the baseline SF-36 scores to those at 6 months and 12 months, there was statistically significant worsening in the physical domains and improvement in the emotional domains (all P ⬍ 0.05). About 50%- to 80% of patients returned to baseline scores 6 months and 12 months after surgery. Age, body mass index (BMI), educational level, occupational status, New York Heart Association (NYHA) functional class, tumor mode of presentation, pathologic stage, size, and histologic subtype were associated with 6-month and 12-month return to the baseline HRQOL scores. The main limitation of the study was the lack of a disease-specific questionnaire. Most patients returned to preoperative HRQoL within 12 months after RN or NSS. Several patient features, clinical variables, and pathologic tumor variables predict the return of HRQOL.
Commentary Measuring the quality-of-life (QOL) after cancer surgery is an important component of providing quality cancer care. For cancers that are more chronic in nature (e.g., small renal cancers, some prostate cancers), QOL is an important consideration when deciding between the various treatment options and their tradeoffs. If you don’t measure it, you won’t improve it. With that in mind, this study uses a very general measure of health status to assess QOL before and after surgery for kidney cancer. Importantly, this study highlights two considerations when measuring QOL: ensure that your questionnaire assesses the themes that are important (i.e., if bowel related symptoms are common after surgery, your questionnaire needs to measure them); administer the questionnaire at intervals that will be helpful (i.e., if everyone is back to baseline at 6 months, you need to administer your questionnaire at intervals throughout the 6-month window). With these tenets of QOL measurement in mind, the efforts of you and your patients to identify opportunities to improve will be rewarded. doi:10.1016/j.urolonc.2009.06.013 Brent K. Hollenbeck, M.D., M.S.
Commentary on Lack of comprehension of common prostate cancer terms in an underserved population. Kilbridge KL, Fraser G, Krahn M, Nelson EM, Conaway M, Bashore R, Wolf A, Barry MJ, Gong DA, Nease RF Jr., Connors AF, Massachusetts General Hospital, General Medicine Unit, Boston, MA. J Clin Oncol 2009;27:2015–21 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. 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 ⱖ 40, from two low-income clinics. Comprehension was evaluated using semiqualitative methods coded by two independent investigators. Demographics were collected and literacy was measured. 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 (e.g., “rectum” vs. “rectal urgency,” “intercourse” vs. “vaginal intercourse”). Comprehension of terms from all domains was significantly correlated statistically with reading level (P ⬍ 0.001). Median literacy level was fourth to sixth grade. Prostate cancer knowledge was poor. Many patients had difficulty locating key anatomic structures. 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.
Commentary Most quality-of-life (QOL) questionnaires are constructed and validated in academic settings. Those that are rigorously vetted over time and in various patient populations can cost considerable sums to develop. However, even with the steps taken in the lengthy validation process, questionnaires may not always provide reliable and valid information if their content is misinterpreted by patients. This study raises significant concern about patient comprehension of terms widely used in many of the more commonly used questionnaires to assess QOL in prostate cancer. In particular, this study implies that these questionnaires may not be providing useful data when administered to an underserved population in whom disparities in outcomes are greatest. doi:10.1016/j.urolonc.2009.06.014 Brent K. Hollenbeck, M.D., M.S.