Information needs of men regarding prostate cancer screening and the effect of a brief decision aid

doi:10.1016/j.pec.2003.12.003

Patient Education and Counseling

Volume 54, Issue 3, September 2004, Pages 345-351

https://doi.org/10.1016/j.pec.2003.12.003 Get rights and content

Abstract

Background: Little is known about what information affects men’s decisions about prostate cancer screening. Methods: We developed a four-part decision aid about prostate cancer screening and tested it in men, ages 45–85, to determine how the information in each part—(1) the epidemiology of prostate cancer; (2) the PSA test; (3) prostate biopsy and treatment options for prostate cancer; and (4) balance sheets to aid decision-making—affected men’s interest in screening. Results: One hundred eighty-eight men from one general internal medicine clinic participated in our study (response rate 65%). Before the decision aid, 76% were interested in screening; 8% were not; and 16% were undecided. The decision aid increased the proportion of men who knew the advantages (+28%; 95% CI: 21–35) and disadvantages (+55%; 95% CI: 48–63%) of screening. It also increased the proportion who knew enough to make a decision (+24; 95% CI: 16–32%). It did not change mens’ interest in screening (P=0.134). Twenty percent of men, however, did change their interest category. Men who were undecided at baseline were more likely to change than those who were interested or not interested. There were no clinically meaningful changes in interest following each component part of the decision aid. Conclusion: Interest in prostate cancer screening is high and remained high after a 10 min decision aid. The decision aid increased the proportion of men with sufficient information to decide about screening. It also changed 20% of men’s interest in screening. Because no single piece of information was influential to decision-making in all men, clinicians may want to tailor information to men’s individual needs.

Introduction

Several professional organizations now recommend that men should participate in decision-making about prostate cancer screening [1], [2], [3] due to the unknown benefits of screening in the face of potential physical, psychological, and financial harms. Such recommendations are responsive to a call from decision-making experts to include patients in decisions that may be sensitive to individuals’ personal values and preferences based on the uncertainty of the evidence or a close balance between potential harms and benefits [4], [5], [6], [7], [8], [9], [10].

One way to encourage participation is through the use of decision aids, which are multi-media tools that provide balanced, evidence-based information and values clarification for a decision [11], [12] Decision aids on prostate cancer screening have been shown to increase knowledge about prostate cancer screening [13], [14], [15], [16]. Additionally, some have been shown to decrease interest in screening and use of screening tests [13], [14], [15], [16], [17]. Little is known, however, about which information in these decision aids affects men’s decisions about prostate cancer screening. Such information could help clinicians better deliver information on prostate cancer screening and could lead to the development of more effective and efficient decision aids.

In this study, we developed a pamphlet-based decision aid on prostate cancer screening and used it to measure which information had an effect on men’s interest in screening and what proportion of men changed their interest in screening after viewing the decision aid.

Section snippets

Designing and developing the decision aid

We developed a four-part decision aid that included information about (1) the natural history and epidemiology of prostate cancer, (2) the prostate specific antigen test, (3) the prostate biopsy and treatment options available for prostate cancer, and (4) the harms and benefits of screening presented in two balance sheets designed to promote the unbiased weighing of personal preferences. A detailed summary of the information we presented is listed in Fig. 4. The full decision aid is available

Results

We approached 313 men about participation in our study. Ninety-eight (31%) refused and 23 (7%) were ineligible because they had a prior history of prostate cancer (n=6), could not read, write, or speak English (n=8), or did not complete the decision aid and survey (n=9). One hundred eighty-eight men were determined to be eligible and agreed to participate in our study for a response rate of 65%.

Table 1 provides information about the study participants. Mean age was 60. Seventy percent were

Discussion

Interest in prostate cancer screening among patients in a university internal medicine clinic was high and remained high even after a brief decision aid. The decision aid increased the proportion of men who knew the advantages and disadvantages of screening and increased the proportion who knew enough to make a decision. It did not affect mean interest in screening, although 20% of men changed their interest category after viewing the decision aid. Men who were undecided at baseline were more

Practice implications

Despite the limitations, we believe our study has important implications for clinical practice. Because no one piece of information is influential to decision-making in all men, clinicians may want to tailor information to men’s individual needs. In deciding what information is necessary to present, clinicians should consider that a substantial portion of men do not know that whether to be screened or not is a decision and they do not feel they know the harms of screening. Decision aids can

Acknowledgements

This work was supported by a University Research Council Grant through the Lineberger Comprehensive Cancer Center. Dr. Sheridan was additionally supported by a National Research Services Award (Public Health Service Grant #PE 14001-14). Drs. Pignone and Lewis were additionally supported by the American Cancer Society Career Development Awards (#01-195-01 and #00-180-00).

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Cited by (49)

Evaluation of Implementation Outcomes After Initiation of a Shared Decision-making Program for Men With Prostate Cancer
2019, Urology
To evaluate barriers to implementation of patient decision aids (PDAs) issued in an electronic medical record (EMR). We undertook an implementation outcomes analysis focused on what proportion of men eligible for the PDA received it (penetration), and of the men who received it, how many used it as intended (fidelity). We also evaluated various patient-centered outcomes related to decision-making.
Men with incident localized prostate cancer were recruited from at UCLA from 2013 to 2017. PDA eligibility was determined via weekly EMR review. We also performed a retrospective chart review of all patients seen in clinic for one sample week to identify patients that were missed by the initial eligibility algorithm, and investigated the cause for miscategorization. We analyzed differences in patient-centered outcomes between those who did and did not receive the PDA.
About 314/374 men with incident prostate cancer completed the PDA conferring 84% fidelity. PDA penetration under initial identification prospective algorithm was assessed at 100% (n = 2/n = 2). However, penetration assessed by manual retrospective chart review was 20% (n = 2/n = 10). Improvements to the identification algorithm, including new EMR visit types, were identified. PDA completion was associated with less decisional conflict and higher perceived Shared decision-making (all P<.03).
No previous studies have investigated the challenges of implementing a PDA facilitated by the EMR. We identified modifiable system and EMR-related factors that limited program penetration. Our PDA showed decisional quality benefits.
Prostate Cancer Screening Patient Decision Aids: A Systematic Review and Meta-analysis
2018, American Journal of Preventive Medicine
Citation Excerpt :
Furthermore, one large uncontrolled before–after study39 supported this change in intention (Appendix Figure 4, available online). However, the overall effect from three before–after studies39,42,41 and before–after results from five RCTs34,44,48,49,53 that studied eight DAs, suggests a significant increase (p=0.04 and p<0.01, respectively) in the number of men who did not want to be screened after using a DA. These analyses (Appendix Figure 5, available online) did not identify a significant effect of DAs on the proportion of men who were undecided about their screening strategy.
Although screening recommendations for prostate cancer using prostate-specific antigen testing often include shared decision making, the effect of patient decision aids on patients’ intention and uptake is unclear. This study aimed to review the effect of decision aids on men's screening intention, screening utilization, and the congruence between intentions and uptake.
Data sources were searched through April 6, 2018, and included MEDLINE, Scopus, CENTRAL, CT.gov, Cochrane report, PsycARTICLES, PsycINFO, and reference lists. This study included RCTs and observational studies of decision aids that measured prostate screening intention or behavior. The analysis was completed in April 2018.
Eighteen studies (13 RCTs, four before–after studies, and one non-RCT) reported data on screening intention for ≅8,400 men and screening uptake for 2,385 men. Compared with usual care, the use of decision aids in any format results in fewer men (aged ≥40 years) planning to undergo prostate-specific antigen testing (risk ratio=0.88, 95% CI=0.81, 0.95, p=0.006, I²=66%, p<0.001, n=8). Many men did not follow their screening intentions during the first year after using a decision aid; however, most men who were planning to undergo screening did so (probability that men who wanted to be screened would receive screening was 95%).
Integration of decision aids in clinical practice may result in a decrease in the number of men who elect prostate-specific antigen testing, which may in turn reduce screening uptake. To ensure high congruence between intention and screening utilization, providers should not delay the shared decision-making discussion after patients use a decision aid.
What Have Patients Been Hearing From Providers Since the 2012 USPSTF Recommendation Against Routine Prostate Cancer Screening?
2017, Clinical Genitourinary Cancer
Citation Excerpt :
Screening using the prostate-specific antigen (PSA) remains controversial primarily because of results from 2 large studies that identified conflicting results of the efficacy and effectiveness of PSA testing.1,2 Because of the low specificity and sensitivity of PSA testing, the American Cancer Society (ACS) and the US Preventive Services Task Force (USPSTF) initially suggested provider communication (PC), which can lead to informed and shared decision-making, as the preferred model to guide decisions regarding prostate cancer (PCa) screening.3 However, the 2012 USPSTF guidelines recommended against PCa screening.4
In this study we aimed to determine the relationship between prostate-specific antigen (PSA)-related information obtained from the provider and PSA test uptake. With recent focus on patient-provider communication (PC) and the guidelines recommending against PSA tests for prostate cancer (PCa), PC regarding the PSA test might affect PSA screening rates.
We used the fourth edition of the Health Information National Trends Survey, a nationally-representative US survey on the use of cancer-related information. The survey was conducted in 3 cycles: October 2011 to January 2012 (cycle 1); October 2012 to January 2013 (cycle 2); September 2013 to October 2013 (cycle 3). Logistic regression was used to study the effect of PC on respondents' uptake of the PSA test.
Most of the respondents were 51 to 65 years old, white, with college or higher education, were married, and had health insurance. PC regarding the PSA test greatly increased the chances of screening for PCa using the PSA test in all 3 cycles (odds ratio [OR], 2.51 [95% confidence interval (CI), 2.03-3.10] in cycle 1; OR, 3.50 [95% CI, 2.51-4.88] in cycle 2; OR, 2.69 [95% CI, 2.02-3.58] in cycle 3).
Our study showed that PC increased the likelihood of patients undergoing PSA screening. In light of the 2012 US Preventive Services Task Force guidelines recommending against screening for PCa, PC seemed to have an opposite effect. Although updated PC that educates patients on the risks and benefits of PSA screening is needed, patients classically overemphasize benefits and underemphasize risks—which might increase rather than decrease PSA screening rates.
Why is perioperative chemotherapy for bladder cancer underutilized?
2014, Urologic Oncology: Seminars and Original Investigations
Despite clinical evidence and recommendations from international treatment guidelines, the use of perioperative chemotherapy for muscle-invasive bladder cancer in routine practice remains low. Although multiple studies have described underutilization, there is an urgent need to better understand the elements contributing to the observed gaps in care. In this commentary, we explore what is known about the factors contributing to underutilization of perioperative chemotherapy for muscle-invasive bladder cancer. We also propose a framework to guide future knowledge translation activities in an effort to improve the care and outcomes of patients with this disease.
Information needs of post-menopausal women with hormone receptor positive early-stage breast cancer considering adjuvant endocrine therapy
2013, Patient Education and Counseling
Citation Excerpt :
Wide variability in patient information needs is emerging empirically in a number of settings. In addition to being evident among early-stage prostate cancer and among the current subgroup of early-stage breast cancer patients, it has been identified among men considering prostate cancer screening [35], among colorectal cancer patients [36] and in a large sample of people with a variety of cancers with no association specific to individual tumour sites [37]. Wide variability in patient information needs cannot be addressed very easily in busy clinical practices.
To identify questions that post-menopausal women with receptor-positive early-stage breast cancer want answered before their adjuvant-endocrine-therapy decision is made.
We surveyed patients eligible for adjuvant-endocrine therapy in the previous 3–18 months. Participants rated the importance of getting each of 95 questions answered before the decision is made (options: essential/desired/not important or no opinion/avoid). For each question rated “essential”/“desired”, the participant also identified the purpose(s) for the answer: to help her understand, decide, plan, or other reason(s).
The response rate was 55% (188/343). Participants rated a mean of 57 (range: 1–95) questions “essential”, 80 (range: 1–95) “essential” or “desired”, and 2 (range: 0–27) “avoid”. Every question was “essential” to ≥31% of participants, and “essential”/“desired” to ≥63%. All but eleven questions were rated as “avoid” by ≥1 participant. The most frequent purposes for “essential” questions were to: understand their situations (mean 45, range: 0–95), decide (mean 18, range: 0–94), and plan (mean 13, range: 0–95).
Many patients want a lot of information before this decision is made but there is wide variation within the group in both the number and in which questions they want answered.
Patient education in this setting needs to be tailored to the needs of the individual patient.
Information for decision making by post-menopausal women with hormone receptor positive early-stage breast cancer considering adjuvant endocrine therapy
2013, Breast
To identify the information that post-menopausal women with hormone-receptor positive, early-stage breast cancer want, to help them decide among six treatment options for adjuvant-endocrine therapy.
We surveyed women with early-stage breast cancer who were eligible for adjuvant endocrine-therapy 3–18 months earlier. Participants rated the importance of getting each of 95 questions answered before this decision is made (options: essential/desired/not important/avoid). For questions rated essential or desired, participants identified the purpose(s) for having the question answered: to help them understand, make the decision, plan, or other. Participants indicated the role they played in their actual decision and the role they would prefer if the decision was made today. They also indicated whether they felt they had had a choice of endocrine therapy treatments.
188 of 343 questionnaires were returned (response rate 55%). Mean age was 67 yr (range 38–88 yr); 76% were married, and 39% had secondary school education or less. On average, respondents rated 18 questions (range 0–94) essential for decision making. Each question was rated essential for decision making by ≥7% of participants but only 1 question by >50%. Regarding roles, 89% of respondents had participated in their actual decision and would want to again; an additional 9% had not participated in their actual decision but would want to at the time of the survey. The percentage of respondents who felt they had no choice of endocrine therapy treatments varied between centres, 25% vs 41% and 49%.
Most patients want to participate in the decision but they vary widely in the amount and which specific details they want to help them make the decision.
The wide variation in questions considered important means the support should be tailored to the needs of the individual patient.

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View full text

Information needs of men regarding prostate cancer screening and the effect of a brief decision aid

Abstract

Introduction

Section snippets

Designing and developing the decision aid

Results

Discussion

Practice implications

Acknowledgements

Am. J. Prev. Med.

Am. J. Prev. Med.

Am. J. Med.

Patient Education Counseling

Informed decision making in outpatient practice: time to get back to basics

JAMA

Patients’ health-care decision making: a framework for descriptive and experimental investigations

Med. Decis. Making

Evidence-informed patient choice. Practical issues of involving patients in decisions about health care technologies

Int. J. Technol. Assess Health Care

Partnerships with patients: the pros and cons of shared clinical decision-making

J. Health Serv. Res. Policy

Health decision aids to facilitate shared decision making in office practice

Ann. Intern. Med.