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.
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.
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.
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.
(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.
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.
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 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.
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.