Perceptions of Prostate Cancer Screening Controversy and Informed Decision Making: Implications for Development of a Targeted Decision Aid for Unaffected Male First-Degree Relatives

Abstract

Purpose.

First-degree relatives (FDRs) of prostate cancer (PC) patients should consider multiple concurrent personal risk factors when engaging in informed decision making (IDM) about PC screening. This study assessed perceptions of IDM recommendations and risk-appropriate strategies for IDM among FDRs of varied race/ethnicity.

Design.

A cross-sectional, qualitative study design was used.

Setting.

Study setting was a cancer center in southwest Florida.

Participants.

The study comprised 44 participants (24 PC patients and 20 unaffected FDRs).

Method.

Focus groups and individual interviews were conducted and analyzed using content analysis and constant comparison methods.

Results.

Patients and FDRs found the PC screening debate and IDM recommendations to be complex and counterintuitive. They overwhelmingly believed screening saves lives and does not have associated harms. There was a strongly expressed need to improve communication between patients and FDRs. A single decision aid that addresses the needs of all FDRs, rather than one separating by race/ethnicity, was recommended as sufficient by study participants. These perspectives guided the development of an innovative decision aid that deconstructs the screening controversy and IDM processes into simpler concepts and provides step-by-step strategies for FDRs to engage in IDM.

Conclusion.

Implementing IDM among FDRs is challenging because the IDM paradigm departs from historical messages promoting routine screening. These contradictions should be recognized and addressed for men to participate effectively in IDM. A randomized pilot study evaluating outcomes of the resulting decision aid is underway.

Keywords

Prostate Cancer Informed Decision Making Decision Aid First-Degree Relatives Family History Health Promotion Prevention Research Manuscript format: research Research purpose: descriptive Study design: qualitative Outcome measure: behavioral Setting: clinical/health care Health focus: social health Strategy: education,skill building/behavior change and culture change Target population age: adults Target population circumstances: race/ethnicity and male first-degree relatives

References

American Cancer Society . Cancer facts & figures 2014. Altanta, Ga: American Cancer Society; 2014.

McDowell

Occhipinti

Gardiner

. A review of prostate-specific antigen screening prevalence and risk perceptions for first-degree relatives of men with prostate cancer. Eur J Cancer Care (Engl). 2009;18:545–555.

Roumier

Azzouzi

Valeri

. Adherence to an annual PSA screening program over 3 years for brothers and sons of men with prostate cancer. Eur Urol. 2004;45:280–285; author reply 285–286.

Beebe-Dimmer

Wood

Jr Gruber

. Risk perception and concern among brothers of men with prostate carcinoma. Cancer. 2004;100:1537–1544.

Schroder

Hugosson

Roobol

. Screening and prostate-cancer mortality in a randomized European study. N Engl J Med. 2009;360:1320–1328.

Andriole

Crawford

Grubb

III . Mortality results from a randomized prostate-cancer screening trial. N Engl J Med. 2009;360:1310–1319.

American Urological Association . Early detection of prostate cancer: AUA guideline. Available at: http://www.auanet.org/education/guidelines/prostate-cancer-detection.cfm. Accessed September 7, 2013.

Strope

Andriole

. Prostate cancer screening: Current status and future perspectives. Nat Rev Urol. 2010;7:487–493.

Wilt

MacDonald

Rutks

. Systematic review: Comparative effectiveness and harms of treatments for clinically localized prostate cancer. Ann Intern Med. 2008;148:435–448.

10.

Moyer VA; US Preventive Services Task Force . Screening for prostate cancer: US Preventive Services Task Force recommendation statement. Ann Intern Med. 2012;157:120–134.

11.

Vedela

Putsa

MTE

Monettea

. The decision-making process in prostate cancer screening in many primary care with a prostate cancer-specific antigen: A systematic review. J Geriatr Oncol. 2011;2:161–176.

12.

Volk

Linder

Kallen

. Primary care physicians' use of an informed decision-making process for prostate cancer screening. Ann Fam Med. 2013;11:67–74.

13.

Goodwin

Tan

Jaramillo

Kuo

. Prostate-specific antigen testing in men aged 40–64 years: Impact of publication of clinical trials. J Natl Cancer Inst. 2013;105:743–745.

14.

Ferrante

Shaw

Scott

. Factors influencing men's decisions regarding prostate cancer screening: A qualitative study. J Community Health. 2011;36:839–844.

15.

Wolf

Wender

Etzioni

. American Cancer Society guideline for the early detection of prostate cancer: Update 2010. CA Cancer J Clin. 2010;60:70–98.

16.

Volk

Hawley

Kneuper

. Trials of decision aids for prostate cancer screening: A systematic review. Am J Prev Med. 2007;33:428–434.

17.

Barratt

Stockler

. Screening for prostate cancer: Explaining new trial results and their implications to patients. Med J Aust. 2009;191:226–229.

18.

Lepore

Wolf

Basch

. Informed decision making about prostate cancer testing in predominantly immigrant black men: A randomized controlled trial. Ann Behav Med. 2012;44:320–330.

19.

Stacey

Bennett

Barry

. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2011:CD001431.

20.

Hersch

Jansen

Irwig

. How do we achieve informed choice for women considering breast screening? Prev Med. 2011;53:144–146.

21.

Shokar

Carlson

Weller

. Informed decision making changes test preferences for colorectal cancer screening in a diverse population. Ann Fam Med. 2010;8:141–150.

22.

Myers

Daskalakis

Kunkel

. Mediated decision support in prostate cancer screening: A randomized controlled trial of decision counseling. Patient Educ Couns. 2011;83:240–246.

23.

LeBlanc

Kenny

O'Connor

Legare

. Decisional conflict in patients and their physicians: A dyadic approach to shared decision making. Med Decis Making. 2009;29:61–68.

24.

Hawkins

Kreuter

Resnicow

. Understanding tailoring in communicating about health. Health Educ Res. 2008;23:454–466.

25.

Kreuter

McClure

. The role of culture in health communication. Annu Rev Public Health. 2004;25:439–455.

26.

Kreuter

Wray

. Tailored and targeted health communication: Strategies for enhancing information relevance. Am J Health Behav. 2003;27(suppl 3):S227–S232.

27.

Vadaparampil

Jacobsen

Kash

. Factors predicting prostate specific antigen testing among first-degree relatives of prostate cancer patients. Cancer Epidemiol Biomarkers Prev. 2004;13:753–758.

28.

Wakefield

Watts

Meiser

. Development and pilot testing of an online screening decision aid for men with a family history of prostate cancer. Patient Educ Couns. 2011;83:64–72.

29.

Centers for Disease Control and Prevention . Tools to Facilitate Shared Decision Making for Prostate Cancer Screening: “Prostate Cancer Screening: A Decision Guide for African Americans”. Atlanta, Ga: Centers for Disease Control and Prevention; 2002.

30.

Centers for Disease Control and Prevention . Tools to Facilitate Shared Decision Making for Prostate Cancer Screening: “Prostate Cancer Screening: A Decision Guide”. Atlanta, Ga: Centers for Disease Control and Prevention; 2002.

31.

Morgan

. Focus Groups as Qualitative Research. 2nd ed. Thousand Oaks, Calif: Sage Publications; 1997.

32.

Morgan

Krueger

. When to use focus groups and why. In: Morgan

, ed. Successful Focus Groups: Advancing the State of the Art. Thousand Oaks, Calif: Sage; 1993:3–19.

33.

Guest

Bunce

Johnson

. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18:59–82.

34.

Glaser

. The constant comparison method of qualitative analysis. Soc Probl. 1965;12:436–445.

35.

Neuman

. Social Research Methods: Qualitative and Quantitative Approaches. 3rd ed. Boston, Mass: Allyn and Bacon; 1997.

36.

Nutbeam

. Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int. 2000;15:259–267.

37.

Nutbeam

. The evolving concept of health literacy. Soc Sci Med. 2008;67:2072–2078.

38.

Doak

Meade

. Strategies to improve cancer education materials. Oncol Nurs Forum. 1996;23:1305–1312.

39.

Doak

Friedell

Meade

. Improving comprehension for cancer patients with low literacy skills: Strategies for clinicians. CA Cancer J Clin. 1998;48:151–162.

40.

Doak

Root

. Teaching Patients With Low Literacy Skills. Philadelphia, Pa: JB Lippincott; 1996.

41.

Hoffman

Lewis

Pignone

. Decision-making processes for breast, colorectal, and prostate cancer screening: The DECISIONS survey. Med Decis Making. 2010;30(suppl 5):53S–64S.

42.

Costanza

Luckmann

Rosal

. Helping men make an informed decision about prostate cancer screening: A pilot study of telephone counseling. Patient Educ Couns. 2010;82:193–200.

43.

Smith

Cokkinides

Brooks

. Cancer screening in the United States, 2010: A review of current American Cancer Society guidelines and issues in cancer screening. CA Cancer J Clin. 2010;60:99–119.

44.

Brett

Ablin

. Prostate-cancer screening-what the US Preventive Services Task Force left out. N Engl J Med. 2011;365:1949–1951.