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BACKGROUND: Pelvic radiotherapy with concurrent 5-fluorouracil-based chemotherapy is a component of standard therapy for patients with T3/T4 or node-positive rectal cancer and may be associated with acute gastrointestinal toxicity. In this retrospective study, we sought to compare patient-reported outcomes (PROs) with clinician reports of acute symptoms experienced by rectal cancer patients receiving chemoradiation. PATIENTS AND METHODS: Charts of 199 patients with rectal cancer who received chemoradiation at some point from November 2006 through February 2011 were reviewed. Clinicians assessed toxicity weekly using Common Terminology for Clinical Adverse Events version 3.0, and, beginning in September 2009, the patients reported symptoms weekly, using the 7-item Bowel Problems Scale. One hundred ninety-seven patients with at least 1 clinician or patient assessment were eligible for the study. We used descriptive statistics to compare patient and clinician assessments in a subgroup of 65 patients (paired group) who had at least 1 patient and clinician assessment on the same day. Cohen's κ coefficient was used to evaluate agreement between the patients and the clinicians. RESULTS: The patients reported diarrhea and proctitis more often than clinicians reported them throughout treatment. Uncorrected agreement for diarrhea and proctitis was 82% and 72%, respectively. Cohen's κ was .64 for diarrhea, indicating moderate agreement, and .22 for proctitis, indicating only slight agreement. CONCLUSIONS: Our findings suggest a discrepancy between clinician and PRO reports. Further study may discern potential benefits of collecting PROs in prospective studies and in clinical practice.
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INTRODUCTION: Genetic testing remains low among racial/ethnic minority populations in the United States. We aimed to determine the prevalence and correlates of awareness of direct-to-consumer (DTC) genetic tests and the prevalence of genetic test use in a population-based sample of adults in Puerto Rico. METHODS: We analyzed data from adults aged 18 years or older who completed information on genetic test awareness (n = 611; 96% of study population) from the Health Information National Trends Survey conducted in Puerto Rico in 2009. Odds ratios with 95% confidence intervals were estimated by using logistic regression models to identify factors associated with awareness of DTC genetic tests. RESULTS: The majority of respondents (56%) were aware of direct-to-consumer genetic tests, and approximately 4% had ever undergone any genetic test. Respondents who had never been married were less likely to be aware of DTC tests, as were current smokers. Respondents who ever sought cancer information were more likely to be aware of these tests. CONCLUSION: We provide the first published data on the awareness of DTC genetic tests and on use of genetic testing in Puerto Rico. Forty-four percent of our sample of Puerto Rican adults were unaware of direct-to-consumer genetic tests. Given the lack of clear benefits of DTC genetic tests to the general population, educational interventions should be developed to increase awareness and specific knowledge regarding the appropriate use of DTC genetic tests among people who are already aware of their existence.
