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

Stacy Loeb, Caitlin Curnyn, Angela Fagerlin, R. Scott Braithwaite, Mark D. Schwartz, Herbert Lepor, H. Ballentine Carter, Shannon Ciprut, Erica Sedlander

Research output: Contribution to journalArticlepeer-review

7 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)241-247
Number of pages7
JournalPatient Education and Counseling
Issue number2
StatePublished - Feb 2018


  • Active surveillance
  • Digital media
  • Informational needs
  • Prostate cancer
  • Qualitative research

ASJC Scopus subject areas

  • Medicine(all)


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