PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Patients often think about healthcare decisions before meeting with their doctor and continue to think about these decisions after the doctor’s visit. Asking patients about how they make healthcare decisions can help researchers understand when and where people get information and advice. It can also tell researchers how much patients rely on their doctors to help them make these decisions.

Project Purpose

This study looked at how patients decide to get screened for breast, colorectal, or prostate cancer. The research team wanted to know if an online decision aid that patients use before seeing their doctor could improve their decision making. Decision aids are tools that help people participate in decisions about healthcare options. They provide information about each option. They can help patients clarify what is important to them and communicate with their doctor about their preferences.

Methods

The research team created an online decision aid called MyQuestions™. It asked patients 17 questions about how ready they were to make a decision and what kind of help or information would be most helpful for them. MyQuestions also gave patients information about the cancer screening tests, including the risks and benefits of each test.

The research team met with groups of patients, doctors, and other healthcare providers to help develop the MyQuestions decision aid. Patients and doctors also helped the research team plan the study.

The research team studied 11,458 patients at 12 primary care clinics in Virginia over a one-year period. The clinics all used an online patient portal. The research team added MyQuestions to the online portal so that patients could use it.

Patients in the study were

• Women who were 40–49 years old, who had not had a mammogram (a breast exam to check for breast cancer) within the last two years
• Men who were 55–69 years old, who had not had a prostate-specific antigen (PSA) test (a blood test to check for prostate cancer) within the last two years
• Adults who were 50–74 years old, who were due for colorectal cancer screening (a colonoscopy or a stool-based test are to check for colorectal cancer)

Patients could choose whether or not to use the MyQuestions decision aid before their visit with their doctor. Those who used the decision aid then chose whether or not to share their answers with their doctor. If patients chose to share, their doctor received their answers. After office visits, all patients filled out a survey about whether they had talked to their doctor about the decision to get cancer screening.

To find out whether MyQuestions helped patients make decisions about getting cancer screening, the research team looked at

• How many patients answered all the questions in MyQuestions
• Whether patients used the information about cancer screening provided in MyQuestions
• Whether they thought MyQuestions helped them make a decision about getting screened

Findings

About 21 percent of the 11,458 patients chose to use MyQuestions. Only 8 percent answered all of the questions. Most patients (77 percent) who started to look at MyQuestions understood that they met the conditions to have one of the cancer screenings. Across all patients, the next steps when making a decision about getting a cancer screening test were to talk to their doctor (77 percent), read or research on their own (29 percent), and ask trusted friends or family (16 percent).

The research team found that patients wanted to know how likely they were to get cancer, how well the screening tests work, and whether screening would improve the chances that they will live longer. Patients’ worries related to cancer screening in general included getting cancer or not finding out early on that they had cancer (79 percent), abnormal test results (41 percent), and having a health problem caused by the test (39 percent). Patients wanted many different kinds of information to help them decide about cancer screening, and 25 percent of patients used the information about cancer screening found in MyQuestions.

Male patients due for prostate cancer screening were more concerned about potential health problems caused by testing than female patients. They prioritized weighing pros and cons over their gut feelings. Female patients due for a mammogram were less likely than men to worry about health problems caused by testing. They prioritized gut feelings over weighing pros and cons.

Almost half of the patients who used the MyQuestions decision aid chose to share their answers with their doctor before their visit.

Patients who used MyQuestions reported that it

• Made their visit more useful (50 percent)
• Increased their knowledge about cancer screening (48 percent)
• Helped them feel involved in making a decision about whether to get screening (43 percent)
• Improved communication with their doctor (38 percent)

Limitations

Only 21 percent of eligible patients chose to use the decision aid; the results might have been different if more patients had used it. This study did not compare patients who used MyQuestions with patients who shared information with their doctors in other ways. The study only looked at what patients said they needed and how they felt about MyQuestions. It didn’t look at whether or not they actually decided to get screened in the end. The research team only studied patients at 12 clinics in Virginia, and only a small number of patients completed the survey after the doctor’s visit. Patients from other clinics or other states may have answered the surveys differently, and results might have been different if more patients had answered the survey.

Conclusions

Many patients face decisions about cancer screenings. Decision aids like MyQuestions can help patients think about the decision before their doctor’s visit so that they’re more prepared to work with their doctor to make a choice about cancer screening. Most patients in the study wanted help from their doctor when deciding whether to undergo screening. Many male patients wanted to weigh the pros and cons and worried about the possible harms from screening tests.

Sharing the Results

The research team presented its work at national conferences, including special events sponsored by PCORI. The research team also published its work in research journals and is working on more papers.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Difficult choices often entail a “decision journey.” The decision journey for most patients likely begins before they ever reach the clinical setting and can continue afterward. Patients need time to contemplate options, gather additional information, confer with family and friends, consider their personal values and preferences, and address worries or concerns. These tasks often cannot be accomplished during an office visit. Engaging people at the outset of decisions before they access care could provide important evidence about the resources they turn to outside the clinical environment and the extent to which they rely on healthcare providers for decision support.

Project Purpose

To explore how people approach potentially difficult decisions about breast, colorectal, and prostate cancer screening and whether an informed decision-making module that patients can access ahead of their appointments offers a promising strategy to improve the decision-making process.

Study Design

Uncontrolled prospective observational cohort study.

Participants, Interventions, Settings, and Outcomes

Eligible patients included (1) women aged 40–49 years who had not had a mammogram within two years, (2) men aged 55–69 years who had not had a prostate-specific antigen (PSA) test within two years, and (3) adults aged 50–74 years who were not up-to-date with colorectal cancer screening.

Researchers developed an Informed Decision-Making Module (IDM), called MyQuestions™, as a vehicle for reaching out to patients on any topic. For the PCORI pilot, it consisted of 17 interactive questions that explored patients’ stages of readiness for making a decision, information needs and fears, assistance they would find most helpful, preferred format for receiving information and statistics, and planned next steps. When approved by the patient, a summary of responses was forwarded to the clinician ahead of appointments. Both patients and clinicians completed post-encounter surveys after the visit, and 30 encounters were audio recorded.

Settings were 12 primary care practices in Virginia that use MyPreventiveCare (MPC), an interactive online patient portal that is linked to the practices’ electronic health record (EHR).

Primary outcomes included uptake of the IDM module, how the module was used, preferences and priorities identified by patients, and perceived impact on clinical encounter and decision making.

Data Sources

(1) EHRs, (2) MPC (portal) data, (3) IDM module responses, (4) IDM module paradata about how patients used embedded educational materials, and (5) post-encounter surveys.

Data Analysis

Categorical variables were summarized with frequencies and percentages, while continuous variables were summarized with the mean and standard deviation; all measures were summarized in aggregate and by cancer type. Chi-square tests compared IDM responses across the three cancer types. ANOVA was used to compare time to follow-up between groups. All analyses were conducted in SAS/STAT software version 9.4.

Quality of Data and Analysis: A full year was devoted to designing the IDM module through a process of broad engagement of patients and other stakeholders. Patients were engaged via focus groups, a patient working group, and an advisory board. Clinicians, healthcare administrators, and scientists were engaged via a clinician working group, health systems working group, and an expert advisory panel. The IDM module underwent two waves of cognitive testing as well as beta testing of the online version.

Findings

Over the one-year study period, 11,458 patients faced at least one of the three cancer screening decisions. Only 20.6% elected to start the IDM module and 7.9% completed it. Most respondents who started the module (76.8%) knew they were eligible for screening. For all respondents, preferred next steps were talking to the clinician (76.6%), reading/research (28.6%), and consulting trusted friends/family (16.4%). Priority topics included how much screening improves life expectancy, comparative test performance, and the prevalence/health risks of the cancer. Leading fears were getting cancer/delayed detection (79.2%), abnormal results (40.5%), and testing complications (39.1%). Men eligible for PSA screening were more likely than women eligible for mammography to express concerns about testing complications and to prioritize weighing pros and cons over “gut feelings” (p < 0.05). Patients expressed a wide variety of information needs, and 24.5% of patients who completed the survey reviewed supplemental educational links. Among module completers, 48.3% chose to share their responses with their clinician. After their next office visit, 57.4% of patients who completed the post-encounter surveys thought their clinician had seen their responses, and many reported that this system made their appointment more productive (50.4%), helped engage them in the decision (42.6%), broadened their knowledge (48.2%), and improved communication with their clinician (37.5%).

Limitations

Limitations include the lack of a control group, reliance on self-report of perceived needs, limited generalizability of the 12 participating practices, inconsistencies in the size and composition of the denominator across questions in the IDM module, and small number of respondents to the post-encounter survey.

Conclusions

To the extent that these data are generalizable, a substantial proportion of patients face decisions that can be anticipated and proactively facilitated, making visits more productive and improving patients’ experiences in making decisions. This process can be extended to a wide range of decision scenarios. Although this sample was predisposed to screening, most patients wanted help in finalizing their decision. Many wanted to weigh pros and cons and expressed fears of potential harms from screening. Understanding how patients approach decisions may help with the design of more effective engagement strategies.