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

•Existing prostate cancer resources are insufficient for active surveillance patients.•Active surveillance patients and providers express a need for verified information.•Prognosis, testing protocols, and lifestyle modification are areas of major need.•Vetted and reliable resources would be useful f...

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Bibliographic Details
Published in:Patient education and counseling 2018-02, Vol.101 (2), p.241-247
Main Authors: Loeb, Stacy, Curnyn, Caitlin, Fagerlin, Angela, Braithwaite, R. Scott, Schwartz, Mark D., Lepor, Herbert, Carter, H. Ballentine, Ciprut, Shannon, Sedlander, Erica
Format: Article
Language:English
Subjects:
Active surveillance
Aged
Digital media
Focus Groups
Health Services Needs and Demand
Humans
Informational needs
Male
Middle Aged
Nursing
Prostate cancer
Prostatic Neoplasms - pathology
Qualitative Research
Social Support
Watchful Waiting
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Summary:•Existing prostate cancer resources are insufficient for active surveillance patients.•Active surveillance patients and providers express a need for verified information.•Prognosis, testing protocols, and lifestyle modification are areas of major need.•Vetted and reliable resources would be useful for both surveillance patients and providers. To understand the informational needs during active surveillance (AS) for prostate cancer from the perspectives of patients and providers. 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. 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). 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. These results are useful to inform the design of future resources for men undergoing AS.
ISSN:0738-3991
1873-5134
DOI:10.1016/j.pec.2017.08.022