Information Seeking and Satisfaction with Information Sources Among Spouses of Men with Newly Diagnosed Local-Stage Prostate Cancer
Information sources about prostate cancer treatment and outcomes are typically designed for patients. Little is known about the availability and utility of information for partners. The objectives of our study were to evaluate information sources used by partners to understand prostate cancer management options, their perceived usefulness, and the relationship between sources used and satisfaction with treatment experience. A longitudinal survey of female partners of men newly diagnosed with local-stage prostate cancer was conducted in three different geographic regions. Partners and associated patients were surveyed at baseline (after patient diagnosis but prior to receiving therapy) and at 12 months following diagnosis. Information sources included provider, literature, friends or family members, Internet websites, books, traditional media, and support groups. Utility of an information source was defined as whether the partner would recommend it to caregivers of other patients with local-stage prostate cancer. Our study cohort included 179 partner-patient pairs. At diagnosis, partners consulted an average of 4.6 information sources. Non-Hispanic white partners were more likely than others to use friends and family as an information source (OR = 2.44, 95% CI (1.04, 5.56)). More educated partners were less likely to use support groups (OR = 0.31, 95% CI (0.14, 0.71)). At 12-month follow-up, partners were less likely to recommend books (OR = 0.23, 95% CI (0.11, 0.49)) compared to baseline. Partners consulted a large number of information sources in researching treatment options for local-stage prostate cancer and the types of sources accessed varied by race/ethnicity and educational attainment. Additional resources to promote selection of high-quality non-provider information sources are warranted to enable partners to better aid patients in their treatment decision-making process.
KeywordsProstate cancer Information sources Partner information needs
This publication has been approved by all co-authors as well as by the responsible authorities.
Compliance with Ethical Standards
Conflict of Interest
The authors declare that they have no conflict of interest.
This study was supported by Cooperative Agreement 1U48DP000050, SIP 25-04 from the Division of Cancer Prevention and Control, Centers for Disease Control and Prevention.
Role of the Funder
This study was not a data collection effort by the Federal government. DCPC staff participated collaboratively in the preparation, review, or approval of the manuscript and decision to submit the manuscript for publication.
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
- 1.National Cancer Institute (2016) Surveillance, epidemiology and end results stat fact sheets: prostate cancer. National Cancer Institute. http://seer.cancer.gov/statfacts/html/prost.html. Accessed October 4, 2016
- 2.Sanda MG, Dunn RL, Michalski J, Sandler HM, Northouse L, Hembroff L, Lin X, Greenfield TK, Litwin MS, Saigal CS, Mahadevan A, Klein E, Kibel A, Pisters LL, Kuban D, Kaplan I, Wood D, Ciezki J, Shah N, Wei JT (2008) Quality of life and satisfaction with outcome among prostate-cancer survivors. N Engl J Med 358(12):1250–1261. doi: 10.1056/NEJMoa074311 CrossRefPubMedGoogle Scholar
- 3.National Conprehensive Care Network (2016) NCCN Clinical Practice Guidelines in Oncology - Prostate Cancer (Version 3.2016). https://www.nccn.org/professionals/physician_gls/pdf/prostate.pdf. Accessed October 4, 2016
- 4.Thompson I, Thrasher JB, Aus G, Burnett AL, Canby-Hagino ED, Cookson MS, D'Amico AV, Dmochowski RR, Eton DT, Forman JD, Goldenberg SL, Hernandez J, Higano CS, Kraus SR, Moul JW, Tangen CM (2007) Guideline for the management of clinically localized prostate cancer: 2007 update. J Urol 177(6):2106–2131. doi: 10.1016/j.juro.2007.03.003 CrossRefPubMedGoogle Scholar
- 5.Wilt TJ, Shamliyan T, Taylor B, MacDonald R, Tacklind J, Rutks I, Koeneman K, Cho CS, Kane RL (2008) Comparative effectiveness of therapies for clinically localized prostate cancer. Agency for Healthcare Research and Quality (US); (Comparative Effectiveness Reviews, No. 13.) Available from:https://www.ncbi.nlm.nih.gov/books/NBK43147/
- 6.Rim SH, Hall IJ, Fairweather ME, Fedorenko CR, Ekwueme DU, Smith JL, Thompson IM, Keane TE, Penson DF, Moinpour CM, Zeliadt SB, Ramsey SD (2011) Considering racial and ethnic preferences in communication and interactions among the patient, family member, and physician following diagnosis of localized prostate cancer: study of a US population. International journal of general medicine 4:481–486. doi: 10.2147/IJGM.S19609 CrossRefPubMedPubMedCentralGoogle Scholar
- 17.Hogben B, Fallowfield L (1989) Getting it taped: the “bad news” consultation with cancer patients. Br J Hops Med 41 (330-3) https://www.ncbi.nlm.nih.gov/pubmed/2720274, http://www.floppybunny.org/robin/web/virtualclassroom/comms/problems/articles/hogbin.pdf
- 21.Zeliadt SB, Penson DF, Moinpour CM, Blough DK, Fedorenko CR, Hall IJ, Smith JL, Ekwueme DU, Thompson IM, Keane TE, Ramsey SD (2011) Provider and partner interactions in the treatment decision-making process for newly diagnosed localized prostate cancer. BJU Int 108(6):851–856 . doi: 10.1111/j.1464-410X.2010.09945.xdiscussion 856-857PubMedGoogle Scholar
- 23.Northouse LL, Mood DW, Montie JE, Sandler HM, Forman JD, Hussain M, Pienta KJ, Smith DC, Sanda MG, Kershaw T (2007) Living with prostate cancer: patients’ and spouses’ psychosocial status and quality of life. J Clin Oncol Off J Am Soc Clin Oncol 25(27):4171–4177. doi: 10.1200/jco.2006.09.6503 CrossRefGoogle Scholar
- 25.Ramsey SD, Zeliadt SB, Arora NK, Potosky AL, Blough DK, Hamilton AS, Van Den Eeden SK, Oakley-Girvan I, Penson DF (2009) Access to information sources and treatment considerations among men with local stage prostate cancer. Urology 74(3):509–515. doi: 10.1016/j.urology.2009.01.090 CrossRefPubMedPubMedCentralGoogle Scholar