Stacy Loeb1, Caitlin Curnyn2, Angela Fagerlin3, R Scott Braithwaite4, Mark D Schwartz2, Herbert Lepor5, H Ballentine Carter6, Shannon Ciprut7, Erica Sedlander2. 1. Department of Urology, New York University, New York City, USA; Department of Population Health, New York University, New York City, USA; Perlmutter Cancer Center, New York University, New York City, USA; Manhattan Veterans Affairs Medical Center, New York City, USA. Electronic address: stacyloeb@gmail.com. 2. Department of Population Health, New York University, New York City, USA; Manhattan Veterans Affairs Medical Center, New York City, USA. 3. Department of Population Health Sciences, University of Utah & VA Salt Lake City Health Care System, Salt Lake City, USA. 4. Department of Population Health, New York University, New York City, USA. 5. Department of Urology, New York University, New York City, USA; Perlmutter Cancer Center, New York University, New York City, USA. 6. Brady Urological Institute, Johns Hopkins Hospital, Baltimore, USA. 7. Department of Urology, New York University, New York City, USA; Department of Population Health, New York University, New York City, USA; Manhattan Veterans Affairs Medical Center, New York City, USA.
Abstract
OBJECTIVE: To understand the informational needs during active surveillance (AS) for prostate cancer from the perspectives of patients and providers. METHODS: We conducted seven focus groups with 37 AS patients in two urban clinical settings, and 24 semi-structured interviews with a national sample of providers. Transcripts were analyzed using applied thematic analysis, and themes were organized using descriptive matrix analyses. RESULTS: We identified six themes related to informational needs during AS: 1) more information on prostate cancer (biopsy features, prognosis), 2) more information on active surveillance (difference from watchful waiting, testing protocol), 3) more information on alternative management options (complementary medicine, lifestyle modification), 4) greater variety of resources (multiple formats, targeting different audiences), 5) more social support and interaction, and 6) verified integrity of information (trusted, multidisciplinary and secure). CONCLUSIONS: Patients and providers described numerous drawbacks to existing prostate cancer resources and a variety of unmet needs including information on prognosis, AS testing protocols, and lifestyle modification. They also expressed a need for different types of resources, including interaction and unbiased information. PRACTICAL IMPLICATIONS: These results are useful to inform the design of future resources for men undergoing AS.
OBJECTIVE: To understand the informational needs during active surveillance (AS) for prostate cancer from the perspectives of patients and providers. METHODS: We conducted seven focus groups with 37 AS patients in two urban clinical settings, and 24 semi-structured interviews with a national sample of providers. Transcripts were analyzed using applied thematic analysis, and themes were organized using descriptive matrix analyses. RESULTS: We identified six themes related to informational needs during AS: 1) more information on prostate cancer (biopsy features, prognosis), 2) more information on active surveillance (difference from watchful waiting, testing protocol), 3) more information on alternative management options (complementary medicine, lifestyle modification), 4) greater variety of resources (multiple formats, targeting different audiences), 5) more social support and interaction, and 6) verified integrity of information (trusted, multidisciplinary and secure). CONCLUSIONS:Patients and providers described numerous drawbacks to existing prostate cancer resources and a variety of unmet needs including information on prognosis, AS testing protocols, and lifestyle modification. They also expressed a need for different types of resources, including interaction and unbiased information. PRACTICAL IMPLICATIONS: These results are useful to inform the design of future resources for men undergoing AS.
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