EducationAssessment of Colon Cancer Literacy in Screening Colonoscopy Patients: A Validation Study
Introduction
Worldwide, colorectal cancer is the third highest cause for cancer-related mortality [1]. Approximately 145,000 patients are diagnosed with colorectal cancer annually in the U.S., making it the third most common cancer 2, 3. Optimal oncologic outcomes and long-term survival is obtained by a multidisciplinary approach, including primary care physicians, radiologists, gastroenterologists, gastrointestinal surgeons, and radiation and medical oncologists. This approach, combined with improvements in chemotherapeutics, have led to significant improvements on colorectal cancer outcomes in recent years 4, 5.
Despite these advances, little is known regarding the impact of patients' understanding of their disease on outcomes. Adequate health literacy enables the patients to be informed and make appropriate treatment decisions [6]. People with limited or low literacy have less knowledge about their own health conditions [7], more hospitalizations [8], higher health care costs [9], and poorer health status [10]. Adequate health literacy can ease the communication barrier between the physician and the patient and thus facilitate informed treatment decisions. Race and ethnicity are also important in this regard. Emphasizing the importance of these factors in the physician–patient communication in health-literacy, Kelly et al. demonstrated that physicians overestimate patient health literacy in 54% of African Americans, 11% of Caucasians, and 36% of other race/ethnicities [11]. Interestingly, Goodwin et al. found that patients with a prior knowledge of breast, prostate or colorectal cancer had a significant survival benefit 12, 13.
Several instruments have been developed to assess general health literacy based on reading and numeracy skills, such as the Rapid Estimate of Adult Literacy in Medicine (REALM) [14], and the Test of Functional Health Literacy in Adults (TOFHLA) [15]. Limitations of the TOFHLA (time-consuming) and REALM (only assesses reading and pronouncing abilities) led to the development of the Newest Vital Sign (NVS) [16]. The NVS is a brief assessment that utilizes a questionnaire based on an ice cream label [16]. Few, if any, specific assessment tools exist specific for a single specialty 17, 18, 19. Literacy assessment tests based on REALM were developed and validated in vascular surgery, genetics, and dentistry to target specific patients visiting those respective subspecialties 17, 18, 19. The need for disease-specific health literacy assessment was previously identified for colon cancer but has yet to be developed and validated [20].
Prior research in our group has demonstrated the effectiveness of such a module about colon cancer using a 10-question survey 21, 22. The aim of the present study is to validate colon cancer-specific health literacy assessment tool: “Assessment of Colon Cancer Literacy (ACCL)”, against a standard measure of health literacy, the NVS.
Section snippets
Subjects
After Institutional Review Board study approval, and after obtaining permission to use the NVS from Pfizer, Inc., a convenience sample of adult, native English-speaking patients scheduled to undergo open-access screening colonoscopy were recruited at the time of colonoscopy check-in in September 2009. Informed consent was obtained from all subjects prior to enrollment, and subjects were anonymously surveyed. Subjects with a prior history of colon cancer, inflammatory bowel disease, and those
Results
A total of 61 subjects completed the ACCL and the NVS surveys; one subject was excluded for not completing the surveys prior to being called for their colonoscopy; one subject with prior history of colon cancer was excluded. In addition, one outlier (a physician) was excluded due to an extreme discrepancy between the score on the NVS and ACCL (scored 0 on the NVS and 9 on ACCL); this subject was visibly anxious and distracted during administration of the NVS.
Demographics and baseline
Discussion
We originally designed the ACCL to assess the impact of a multimedia educational intervention on disease-specific literacy in colon cancer patients. The aim of this study was to assess its validity in the assessment of health literacy using a widely acceptable test, which is a standard. The results of our study suggest that the ACCL is a valid tool for assessing health literacy or colon cancer literacy in screening colonoscopy patients based on its high sensitivity of 91.3% in identifying
Conclusion
In summary, the ACCL was a valid tool for assessing colon cancer literacy in screening colonoscopy patients. Our data suggest that patients who score less than 7 on the ACCL have limited health literacy or colon cancer literacy, and can benefit from additional educational intervention, such as evidence-based multimedia programs or enhanced booklets. Such intervention may especially be important in patients who have recently been diagnosed with colon cancer. In those patients, educational
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