91 VOLUME 7, NUMBER 3 ■ MAY/JUNE 2009 www.SupportiveOncology.net J Support Oncol 2009;7:91–97 © 2009 Elsevier Inc. All rights reserved. ORIGINAL RESEARCH Manuscript submitted February 19, 2009; accepted April 13, 2009 This study was funded through an Outcomes Research Service Agreement with Pfizer, Inc.; the primary purpose of this Agree- ment was to assess the feasibility, acceptability, and reliability of e/Tablets as a method for collecting patient-reported data in the academic oncology setting. Pfizer does not have access to individual data. SOS, Inc. served as vendor in this project; the vendor provided the hardware, which was not funded through the Pfizer agreement. Duke University Medical Center pro- vided the wireless system and associated technical support. Dr. Abernethy has a consulting arrangement with SOS, Inc., which was reported to the Duke University Internal Review Board and Conflict of Interest Committee; there are no other conflicts to be disclosed. Correspondence to: Amy P. Abernethy, MD, Duke University Medical Center, Box 3436, Durham, NC 27710; telephone: (919) 668-0647; fax: (919) 684-5325; e-mail: abern003@ mc.duke.edu Use of Tablet Personal Computers for Sensitive Patient-Reported Information Alexandra Dupont, Jane Wheeler, MS, James E. Herndon II, PhD, April Coan, MPH, S. Yousuf Zafar, MD, Linda Hood, RN, MSN, Meenal Patwardhan, MD, Heather S. Shaw, MD, H. Kim Lyerly, MD, and Amy P. Abernethy, MD Abstract Notebook-style computers (e/Tablets) are increasingly re- placing paper methods for collecting patient-reported information. Discrepancies in data between these methods have been found in oncol- ogy for sexuality-related questions. A study was performed to formulate hypotheses regarding causes for discrepant responses and to analyze whether electronic data collection adds value over paper-based meth- ods when collecting data on sensitive topics. A total of 56 breast cancer patients visiting Duke Breast Clinic (North Carolina) participated by re- sponding to 12 subscales of 5 survey instruments in electronic (e/Tablet) format and to a paper version of 1 of these surveys, at each visit. Twenty- one participants (38%) provided dissimilar responses on paper and electronic surveys to one item of the Functional Assessment of Cancer Therapy–General (FACT–G) Social Well-Being scale that asked patients to rate their satisfaction with their current sex life. Among these 21 patients were 8 patients who answered the question in the electronic environ- ment, and 13 patients who answered both paper and electronic versions but with diferent responses. Eleven patients (29%) did not respond to the item on either e/Tablet or paper; 45 patients (80%) answered it on e/Tablet; and 37 patients (66%) responded on the paper version. The e/ Tablet electronic system may provide a “safer” environment than paper questionnaires for cancer patients to answer private or highly personal questions on sensitive topics such as sexuality. P atient-reported survey data are becom- ing increasingly recognized as an impor- tant component of clinical research and patient care, but the sensitive nature of certain topics introduces challenges into the col- lection of patient-reported information. Most no- tably, sexuality-related questions introduce limi- tations into research due to their sensitivity and perceived invasiveness. In responding to surveys, participants may hesitate to ask for clarification if they do not understand a question; may be re- luctant to proffer information that they consider highly personal and inherently private; may feel uncomfortable responding to personal questions in the presence of a spouse, caregiver, or clini- cian; and may experience discomfort in discuss- ing sexuality-related questions with researchers and clinicians. 1,2 Unless the privacy of responses to sexuality-related questions can be ensured, pa- tients may be unwilling to participate in research that solicits such intimate information; a self- selection factor in study populations may there- fore compromise the validity and usefulness of research data. Previous studies requesting sensitive informa- tion have cited small sample sizes due to high par- ticipant refusal rates. For example, in a study of chronic pain and sexuality, Monga et al reported that only 40% of approached patients participated in the study, of which 12 (7%) were excluded from the final analysis because they did not respond to questions regarding sexual function. 3,4 Addi- tional methodologic problems plaguing research concerning sexuality include limited capacity for external validation and questionable accuracy of responses, which could be biased, for instance, by participants’ tendency to provide socially desir- able responses. 1,2,5 From the Department of Medicine, Division of Medical Oncology; Cancer Center Biostatistics; Duke Comprehensive Cancer Center; Department of Biostatistics and Bioinformatics; Duke Center for Clinical Health Policy Research; Department of Surgery, Duke University Medical Center, Durham, North Carolina