Results Summary

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.

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Project Information

Steven H. Woolf, MD, MPH
Virginia Commonwealth University
$649,007
Understanding Patient Preferences for Informed Decision-Making

Key Dates

June 2012
February 2015
2012
2015

Study Registration Information

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Last updated: March 4, 2022