Informational Needs During Active Surveillance for Prostate Cancer: A Qualitative Study Stacy Loeb MD MSc, Caitlin Curnyn MPH, Angela Fagerlin PhD, Scott Braithwaite MD MSc, Mark D. Schwartz MD, Herbert Lepor MD, H. Ballentine Carter MD, Erica Sedlander MPH 1. INTRODUCTION 4. SUMMARY OF FINDINGS Active surveillance (AS) is an important strategy to reduce overtreatment of low-risk prostate cancer Objective: to understand informational needs during AS for prostate cancer from the perspectives of both patients and providers Features and Characteristics of Informational Resources “We really need a reliable source of information on a website that’s very carefully controlled and agreed upon by multiple specialties. I really think you need a multidisciplinary group that’s out there putting out good information.” - Provider Topics for Informational Resources “Or that red meat is directly associated with prostate cancer, or this food, or this lifestyle, or this activity, or whatever it is. You know? That to me is valuable information” - Patient Definition and explanation of AS Frequency of follow-up testing Types of monitoring tests and interpretation of results Biopsy features (e.g. Gleason score) Predictive tools (e.g. nomograms) Research updates Lifestyle (diet, exercise and alternative medicine) Treatment options if cancer progresses Trusted and vetted by professional organizations No industry bias Multidisciplinary Data security and confidentiality Multiple formats/mediums (e.g. paper and web-based) Resources for family and friends Interaction with other patients Appropriate literacy and numeracy “The healthcare literacy of the bulk of my patients is an issue in terms of our ability to counsel them and help them to understand their disease process. A lot of patients don't even know what a prostate is, let alone understand what the implications of prostate care are.” - Provider “There’s a lot of jargon, and it’s putting all the pieces together. Remembering what the Gleason score is. All I remember is that it exists and a higher number is bad.” - Patient 2. METHODS Identified patients on AS through an electronic health record query Purposively sampled physicians with a range of clinical expertise from across the U.S. All participants completed a demographic survey and patients filled out 2 health utilities Qualitative study data analyzed using applied thematic analysis Perceptions of Gleason Grading Health State Utilities Significant confusion about traditional Gleason scores Patients presented with new grade group classification system 84% agreed it is clearer using a scale of 1-5 instead of 6-10 80% more comfortable with AS for grade group 1 vs “Gleason 6” Gleason Score Grade Group ≤6 1 3+4=7 2 4+3=7 3 8 4 9-10 5 General high quality of life among AS patients EQ-5D-3L (3 items) measures general health utilities and PORPUS (10 items) is prostate cancer-specific Mean EQ-5D: 0.90 ±1.6 Mean PORPUS: 0.98 ±0.03 Correlation: 0.87 (p<0.0001) 3. PARTICIPANTS AND SETTING 7 focus groups with 37 patients on AS From NYU and VA Hospital Median age: 66 (range, 48-84) 65% white, 30% black, 2% other 65% had at least 4-year degree In-depth interviews with 24 physicians who manage men on AS 83% urologist, 13% radiation oncologist, 4% naturopathic doctor Median years in practice: 10 (range, 1-40) 5.CONCLUSIONS While patients on AS experience a relatively high quality of life, there are many gaps in current informational resources Gleason grading is a major source of confusion and the new grade group classification may improve patient counseling Patients also sought additional information on testing options and interpretation, research updates and lifestyle recommendations Optimal resources should be unbiased, multidisciplinary and available in multiple formats These results are useful to inform the design of educational materials and decision support tools for AS This study was supported by the Prostate Cancer Foundation, the Edward Blank and Sharon Cosloy-Blank Family Foundation, The Gertrude and Louis Feil Family, the New York State Department of Health (#105879), The Laura and Isaac Perlmutter NYU Cancer Center (P30CA016087), and the National Institutes of Health (K07CA178258). For more information, contact Stacy Loeb (stacyloeb@gmail.com)