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. 2018 Feb;101(2):241-247.
doi: 10.1016/j.pec.2017.08.022. Epub 2017 Sep 1.

Informational needs during active surveillance for prostate cancer: A qualitative study

Stacy Loeb  1 , Caitlin Curnyn  2 , Angela Fagerlin  3 , R Scott Braithwaite  4 , Mark D Schwartz  2 , Herbert Lepor  5 , H Ballentine Carter  6 , Shannon Ciprut  7 , Erica Sedlander  2
Affiliations

Informational needs during active surveillance for prostate cancer: A qualitative study

Stacy Loeb et al. Patient Educ Couns. 2018 Feb.

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.

Keywords: Active surveillance; Digital media; Informational needs; Prostate cancer; Qualitative research.

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Figures

Figure 1
Figure 1
Recommendations about informational needs during active surveillance, including (a) suggested topics and (b) methods of communication. Parenthesis next to each recommendation note if it was suggested by patients, providers, or both. *Indicates areas with the greatest number of mentions based on counts of codes in NVivo qualitative software
Figure 1
Figure 1
Recommendations about informational needs during active surveillance, including (a) suggested topics and (b) methods of communication. Parenthesis next to each recommendation note if it was suggested by patients, providers, or both. *Indicates areas with the greatest number of mentions based on counts of codes in NVivo qualitative software
See this image and copyright information in PMC

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