Development and pilot testing of an online screening decision aid for men with a family history of prostate cancer

Objective

This study aimed to develop and pilot test an online screening decision aid (DA) for men with a family history of prostate cancer.

Methods

Eligible men (with no previous prostate cancer diagnosis) were recruited through relatives attending a urology outpatient clinic. Men evaluated the DA in two stages. First, they appraised a paper-based version using a questionnaire (n = 22). Second, the same men were asked to reflect on an interactive web-based version via a semi-structured telephone interview (n = 20).

Results

Men evaluated both forms of the DA positively. Of the paper-based version, the majority of participants found the DA useful (91%), and that it contained enough information to make a screening decision (73%). All participants reported that the online DA was easy to use and navigate. Most participants reported that a website was their preferred mode of receiving prostate cancer screening information (70%).

Conclusion

The developed DA may represent the first online decision-making tool designed specifically for men with a family history prostate cancer that presents age and risk specific information to the user.

Practice implications

Comprehensive evaluations of the efficacy and impact of educational interventions such as this are crucial to improve services for individuals making informed screening decisions.     

“It's not like I can change my mind later”: Reversibility and decision timing in prostate cancer treatment decision-making

Objective

To explore whether reversibility, decision timing, and uncertainty are relevant to men deciding on treatment for localized prostate cancer (LPC).

Design

Secondary qualitative data analysis of unstructured interviews.

Methods

Content analysis of previously collected qualitative data (31 individual interviews, 5 focus groups). We identified the frequency of references to reversibility, decision timing, and uncertainty and related sub-themes.

Results

We identified eight themes: reversibility, timing of decision, number of options, “getting it over with,” “the way I make decisions,” uncertainty among experts, desire for certainty, and probability. Fifteen men mentioned reversibility in individual interviews; 13 mentioned the importance of the timing of their decision. Eleven mentioned the importance of the number of options; twelve “the way I make decisions.” Eleven men mentioned the uncertainty of experts, fourteen the desire to “get it over with,” and six a desire for certainty.

Conclusion

This study provides compelling preliminary data suggesting that men consider the reversibility, decision timing, and uncertainty in the prostate cancer treatment decision.

Practice implication

These findings may be helpful in enhancing support for men facing the treatment decision.     

The development of a web- and a print-based decision aid for prostate cancer screening

Background

Whether early detection and treatment of prostate cancer (PCa) will reduce disease-related mortality remains uncertain. As a result, tools are needed to facilitate informed decision making. While there have been several decision aids (DAs) developed and tested, very few have included an exercise to help men clarify their values and preferences about PCa screening. Further, only one DA has utilized an interactive web-based format, which allows for an expansion and customization of the material. We describe the development of two DAs, a booklet and an interactive website, each with a values clarification component and designed for use in diverse settings.

Methods

We conducted two feasibility studies to assess men's (45-70 years) Internet access and their willingness to use a web- vs. a print-based tool. The booklet was adapted from two previous versions evaluated in randomized controlled trials (RCTs) and the website was created to closely match the content of the revised booklet. Usability testing was conducted to obtain feedback regarding draft versions of the materials. The tools were also reviewed by a plain language expert and the interdisciplinary research team. Feedback on the content and presentation led to iterative modifications of the tools.

Results

The feasibility studies confirmed that the Internet was a viable medium, as the majority of men used a computer, had access to the Internet, and Internet use increased over time. Feedback from the usability testing on the length, presentation, and content of the materials was incorporated into the final versions of the booklet and website. Both the feasibility studies and the usability testing highlighted the need to address men's informed decision making regarding screening.

Conclusions

Informed decision making for PCa screening is crucial at present and may be important for some time, particularly if a definitive recommendation either for or against screening does not emerge from ongoing prostate cancer screening trials. We have detailed our efforts at developing print- and web-based DAs to assist men in determining how to best meet their PCa screening preferences. Following completion of our ongoing RCT designed to test these materials, our goal will be to develop a dissemination project for the more effective tool.

Trial Registration

NCT00623090     

Development of a real-time clinical decision support system upon the web mvc-based architecture for prostate cancer treatment

Background  

A real-time clinical decision support system (RTCDSS) with interactive diagrams enables clinicians to instantly and efficiently track patients' clinical records (PCRs) and improve their quality of clinical care. We propose a RTCDSS to process online clinical informatics from multiple databases for clinical decision making in the treatment of prostate cancer based on Web Model-View-Controller (MVC) architecture, by which the system can easily be adapted to different diseases and applications.     

Fostering informed decisions: A randomized controlled trial assessing the impact of a decision aid among men registered to undergo mass screening for prostate cancer

Objective

Screening asymptomatic men for prostate cancer is controversial and informed decision making is recommended. Within two prostate cancer screening programs, we evaluated the impact of a print-based decision aid (DA) on decision-making outcomes.

Methods

Men (N = 543) were 54.9 (SD = 8.1) years old and 61% were African-American. The 2(booklet type: DA vs. usual care (UC)) × 2(delivery mode: Home vs. Clinic) randomized controlled trial assessed decisional and screening outcomes at baseline, 2-months, and 13-months.

Results

Intention-to-treat linear regression analyses using generalized estimating equations revealed that DA participants reported improved knowledge relative to UC (B = .41, p < .05). For decisional conflict, per-protocol analyses revealed a group by time interaction (B = −.69, p < .05), indicating that DA participants were less likely to report decisional conflict at 2-months compared to UC participants (OR = .49, 95% CI: .26–.91, p < .05).

Conclusion

This is the first randomized trial to evaluate a DA in the context of free mass screening, a challenging setting in which to make an informed decision. The DA was highly utilized by participants, improved knowledge and reduced decisional conflict.

Practice implications

These results are valuable in understanding ways to improve the decisions of men who seek screening and can be easily implemented within many settings.     

Development and preliminary evaluation of a bowel cancer screening decision aid for adults with lower literacy

Objective

Several countries have recently implemented national bowel cancer screening programs. To ensure equal access to screening, information is needed to suit adults ranging in literacy level. Decision aids are effective in providing balanced information and have been applied in screening. However, few have been designed for populations with lower education and literacy. This article describes the development and preliminary evaluation of a bowel cancer screening decision aid for this group.

Method

We conducted face-to-face interviews with adults of varying literacy ability, to develop the decision aid (Stage 1). We applied principles of plain language, created visual illustrations to support key textual messages, and used colour coding to direct the reader through the booklet. We then explored its acceptability and comprehension among consumers with higher and lower education (Stage 2). Participants were recruited from a community sample with lower education and a university alumni network.

Results

A total of 75 participants were interviewed, 43 with lower educational attainment and 32 with university education. The decision aid was positively reviewed by both education groups. Results highlighted the need to clarify the purpose of the decision aid and the availability of choice in the context of screening, especially to those with lower education.

Conclusion

The 2 stage iterative development process identified important factors to consider in the development of decision tools for this target group, and is recommended.

Practice implications

Our findings have implications for how to support people with lower education and literacy make informed screening decisions.     

Strategies for distributing cancer screening decision aids in primary care

Objective

Decision aids (DAs) have been shown to facilitate shared decision making about cancer screening. However, little data exist on optimal strategies for dissemination. Our objective was to compare different decision aid distribution models.

Methods

Eligible patients received video decision aids for prostate cancer (PSA) or colon cancer screening (CRC) through 4 distribution methods. Outcome measures included DA loans (N), % of eligible patients receiving DA, and patient and provider satisfaction.

Results

Automatically mailing DAs to all age/gender appropriate patients led to near universal receipt by screening-eligible patients, but also led to ineligible patients receiving DAs. Three different elective (non-automatic) strategies led to low rates of receipt. Clinician satisfaction was higher when patients viewed the DA before the visit, and this model facilitated implementation of the screening choice. Regardless of timing or distribution method, patient satisfaction was high.

Conclusions

An automatic DA distribution method is more effective than relying on individual initiative. Enabling patients to view the DA before the visit is preferred.

Practice implications

Systematically offering DAs to all eligible patients before their appointments is the ideal strategy, but may be challenging to implement.     

Assessing the acceptability and usability of an interactive serious game in aiding treatment decisions for patients with localized prostate cancer

Background

Men diagnosed with localized prostate cancer face a potentially life-altering treatment decision that can be overwhelming. Enhancing patient knowledge through education can significantly reduce feelings of uncertainty while simultaneously increasing confidence in decision making. Serious games have been shown in other populations to increase health knowledge and assist with the health decision-making process. We developed an interactive serious game, Time After Time, which translates evidence-based treatment outcome data into an accessible and understandable format that men can utilize in their prostate cancer treatment decision-making process. The game specifically aims to raise men’s awareness and understanding of the impact of health-related quality of life issues associated with the major treatment options and to enrich their conversations with their health care providers.

Objective

This study determined the acceptability and usability of the alpha version of Time After Time, an interactive decision aid for men diagnosed with localized prostate cancer, in order to inform future iterations of the serious game.

Methods

The study employed a mixed methods approach to assess the acceptability and usability of the Time After Time serious game using qualitative focus groups and a quantitative Likert scale survey.

Results

A total of 13 men who had already completed treatment for localized prostate cancer completed the survey and participated in focus group meetings. The majority of the study participants rated Time After Time as an appropriate decision tool for localized prostate cancer and verified that it meets its goals of increasing focus on side effects and generating questions for the patient’s health care team. However, participants also expressed concerns about game usability and the diversity of information covered regarding treatment options and potential treatment outcomes.

Conclusions

Serious games are a promising approach to health education and decision support for older men. Participants were receptive to the idea of a serious game as a decision aid in localized prostate cancer. However, usability issues are a major concern for this demographic, as is clarity and transparency of data sources.     

A usability study of a computerized decision aid to help patients with, early stage papillary thyroid carcinoma in, decision-making on adjuvant radioactive iodine treatment

Objective

We tested the usability of a patient-directed decision aid (DA), intended for patients with early stage papillary thyroid carcinoma (PTC) deciding to accept or reject adjuvant radioactive iodine (RAI) treatment. This decision is complicated by uncertainty of the medical evidence relating to potential treatment benefits.

Methods

The DA was tested by 12 thyroid cancer survivors, 7 thyroid specialty physicians, and 30 lay individuals with no history of thyroid cancer. The participants completed the System Usability Scale for human-computer interaction questionnaire. The medical knowledge of lay participants was assessed before and after DA exposure. Qualitative participant feedback was obtained by thinking aloud during DA use, as well as from interviews.

Results

Participants generally found the usability of the DA acceptable. The DA significantly increased medical knowledge. In spite of some physicians’ concerns about disclosure of treatment controversy and evidence uncertainty, it was found to be acceptable to non-physicians.

Conclusion

A computerized DA on RAI treatment is acceptable to physicians and non-physicians and can improve medical knowledge.

Practice implications

In counseling patients about complex medical decisions, disclosure of uncertainty related to medical evidence may be acceptably conveyed using a DA.     

Longitudinal regret and information satisfaction after deciding on treatment for localized prostate cancer with or without a decision aid. Results at one-year follow-up in the PCPCC trial

Objective

To investigate the effect of including an online decision aid (DA) during prostate cancer treatment counseling on decisional regret and information satisfaction in a one-year follow-up.

A community-based intervention to promote informed decision making for prostate cancer screening among Hispanic American men changed knowledge and role preferences: a cluster RCT

Objective

We assessed the short-term effects of a community-based intervention for Hispanic men to encourage informed decision making (IDM) about prostate cancer screening with prostate specific antigen (PSA).

Methods

All senior social and housing centers in El Paso, TX were randomized to intervention, a group-based Spanish language educational program facilitated by promotores (12 centers; 161 men) [I's], or to control, promotores-facilitated diabetes video and discussion (13 centers; 160 men) [C's].

Results

Participants had low levels of schooling and baseline knowledge; 44% reported previous PSA testing. At post-test, the I's made large knowledge gains, increased their understanding that experts disagree about testing, shifted toward more active decision making roles, were more likely to believe that it is important to weigh the advantages and disadvantages of screening and to anticipate potential screening outcomes in making a decision, and were less likely to consider the screening decision easy. The I's did not change in their screening intention or the belief that choosing not to be screened could be a responsible choice.

Conclusions

A community-based intervention to support IDM for prostate cancer screening can increase knowledge and may promote more active involvement in decision making about prostate cancer screening. Such an approach can increase knowledge and may promote more active involvement in decision making about prostate cancer screening.

Practice implications

It is feasible to develop and implement a community-based intervention program to promote IDM for prostate cancer screening.     

Improving knowledge and decision readiness to participate in cancer clinical trials: Effects of a plain language decision aid for minority cancer survivors

ObjectiveTo evaluate the impact of a web-based, plain language decision aid (CHOICES DA) on minority cancer survivors’ knowledge of cancer clinical trials (CCTs), readiness for making decisions about clinical trial participation, and willingness to participate in a clinical trial.MethodsParticipants were 64 Black and Hispanic cancer survivors from Miami, Florida. In a single arm intervention study, participants completed self-report assessments of CCT knowledge, decision readiness regarding clinical trial participation, and willingness to participate at three time points.ResultsBlack and Hispanic participants did not differ on demographic characteristics. Post-test and follow-up measures of CCT knowledge and decision readiness were significantly greater than pre-test measures for the sample overall, and for Black and Hispanic participants separately. Few significant differences were observed between Black and Hispanic participant outcomes at each survey time point, and willingness to participate did not change overall and for either group independently.ConclusionsReviewing the CHOICES DA was associated with significantly improved knowledge and decision readiness to participate in a CCT immediately and at 2-week follow-up.Practical ImplicationsThese findings suggest that CHOICES DA may support informed decision making about CCT participation within an acute, yet clinically relevant window of time for minority cancer patients who are substantially under-represented in cancer research.     

Decision aids for surgical treatment of early stage breast cancer: a narrative review of the literature

Objective

To review and critique the published empirical research on decision aids for women actually facing surgical treatment of early stage breast cancer, synthesize findings across studies related to outcomes of decision aids use with specific attention to the influence of system and client characteristics, and identify opportunities for further research.

Methods

A systematic and reproducible search was carried out to identify studies evaluating decision aids for women making breast cancer surgical treatment decisions. All included studies were appraised.

Results

Most studies evaluated the outcomes of decision aids use in terms of final treatment decisions, patients’ knowledge of treatment options, anxiety, decisional conflict, satisfaction and quality of life. Included studies varied in design, measures used to assess effectiveness, format of the aids, patient populations and clinical settings. Studies yielded mixed results related to the effect of the decision aids on the outcomes measured.

Conclusion

Despite the mixed findings of the studies, some support exists for the use of decision aids with women diagnosed with early stage breast cancer.

Practice implications

To ensure successful implementation of decision aids in clinical practice, healthcare providers should be educated on their use. Greater allocation of time, space and access to decision aids is also needed.     

Assessing the information desire of patients with advanced cancer by providing information with a decision aid,which is evaluated in a randomized trial: a study protocol

Background  

There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even patients with advanced cancer desire information on risks and prognosis. To settle the debate, a decision aid will be developed and presented to patients with advanced disease at the point of decision making. The aid is used to assess the amount of information desired. Factors related to information desire are explored, as well as the ability of the medical oncologist to judge the patient's information desire. The effects of the information on patient well-being are assessed by comparing the decision aid group with a usual care group.     

Video-based patient decision aids: A scoping review

Objective

This study reviews the published literature on the use of video-based decision aids (DA) for patients. The authors describe the areas of medicine in which video-based patient DA have been evaluated, the medical decisions targeted, their reported impact, in which countries studies are being conducted, and publication trends.

Racial differences in veterans’ response to a standard vs. patient-centered decision aid for prostate cancer: Implications for decision making in African American and White men

ObjectiveTo determine whether racial differences exist in patient preferences for prostate cancer treatment after being informed about options using a patient-centered vs. a standard decision aid (DA).MethodsThis article reports secondary analyses of a large study of men diagnosed with early stage prostate cancer. Men were recruited from 4 VA Health Systems and randomized to receive a patient-centered or standard DA about prostate cancer treatment options. Data were collected at 1) baseline, 2) after reading the DA but prior to diagnosis, and 3) after receiving a cancer diagnosis and meeting with a urologist.ResultsWhite patients who received the patient-centered DA written at a 7^th grade reading level were more likely to prefer active surveillance and less likely to prefer radiation compared to those who received the standard DA written at >9th grade reading level. African American patients’ treatment preferences did not differ as a function of DA.ConclusionsWhen informed about prostate cancer treatment options through a patient-centered DA, White patients changed their treatment preferences but African American patients did not.Practice ImplicationsAs DAs are increasingly being used in clinical practice, more research is needed regarding the efficacy, relevance, and receptivity of DAs for African Americans.     

Combining deliberation and intuition in patient decision support

Objective

To review the strengths and weaknesses of deliberative and intuitive processes in the context of patient decision support and to discuss implications for decision aid (DA) design.

Methods

Conceptual review of the strengths and weaknesses of intuitive and analytical decision making and applying these findings to the practice of DA design.

Results

DAs combine several important goals: providing information, helping to clarify treatment related values, supporting preference construction processes, and facilitating more active engagement in decision making. Many DAs encourage patients to approach a decision analytically, without solid theoretical or empirical grounding for this approach. Existing research in other domains suggests that both intuition and deliberation may support decision making. We discuss implications for patient decision support and challenge researchers to determine when combining these processes leads to better outcomes.

Conclusions

Intuitive and analytical decision processes may have complementary effects in achieving the desired outcomes of patient decision support.

Practice implications

DA developers should be aware that tools solely targeted at supporting deliberation may limit DA effectiveness and harm preference construction processes. Patients may be better served by combined strategies that draw on the strengths and minimize the weaknesses of both deliberative and intuitive processes.     

1842676957299765Latent class cluster analysis to understand heterogeneity in prostate cancer treatment utilities

Background  

Men with prostate cancer are often challenged to choose between conservative management and a range of available treatment options each carrying varying risks and benefits. The trade-offs are between an improved life-expectancy with treatment accompanied by important risks such as urinary incontinence and erectile dysfunction. Previous studies of preference elicitation for prostate cancer treatment have found considerable heterogeneity in individuals' preferences for health states given similar treatments and clinical risks.     

The effects of process-focused versus experience-focused narratives in a breast cancer treatment decision task

Objective

To examine the effect of patient narratives that discuss decision processes versus patient experiences on decisions about treatments for early stage breast cancer.

Methods

We recruited 300 women with no previous history of breast cancer to imagine that they had been diagnosed with early stage breast cancer and to choose between mastectomy and lumpectomy with radiation. Before learning about their treatment options, participants were randomly assigned to one of four conditions with videotaped stories from fictitious cancer survivors, using a 2 (content: experience versus process) × 2 (emotional valence: positive only vs. positive and negative) factorial design, or a control condition with no stories. We measured information search, treatment intentions, and decision satisfaction.

Results

Participants viewing process narratives spent more time searching for information. Participants viewing experience narratives reported a greater ability to imagine what it was like to experience the treatments; they also evaluated their decision more positively on several dimensions.

Conclusions

Process narratives appeared to guide information search, and experience narratives improved evaluations of the decision process.

Practice implications

There is no evidence that process and experience narratives ‘bias’ decisions in the same manner as outcome narratives. Further, their potential to focus patient attention on key information and increase patient confidence in decision making appears significant.