1. 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