Pilot Project: Understanding Consumer Perspectives on Updated Preventive Care Recommendations

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

The United States Preventive Services Task Force (USPSTF) is a group of medical experts that helps decide if certain types of health care help prevent disease. This type of care is called preventive care. Many consumers are not familiar with how the USPSTF makes its recommendations. The USPSTF gives letter grades based on the evidence for both the benefits and harms of a screening test or treatment. For example, a screening test that reliably finds disease might get an A grade and be recommended for a large population. A test that is less reliable might get a C grade. By law, health insurance plans must pay the entire cost of preventive care if the USPSTF gives it an A or B grade. For care that receives a lower grade, insurance companies can choose to pay some or none of the cost.

Lack of patient understanding of USPSTF recommendations and how they were created can lead to under- and overuse of preventive care.

Project Purpose

The study had two goals. The researchers wanted to

• Learn what adults in the United States knew about the USPSTF and how they felt about the changes USPSTF made to grades for certain cancer screenings
• Develop and test new ways of explaining USPSTF recommendations for two different cancer screening tests

Methods

First, using an online survey, the researchers surveyed 2,529 adults in the United States on their understanding and feelings about preventive care, the USPSTF, and its recommendations.

Second, based on the findings from the survey, the researchers wrote messages explaining the USPSTF recommendations regarding prostate and cervical cancer screening. For each screening, the team developed three messages that focused on the following:

• Harms resulting from patients not following the recommendation
• Benefits resulting from patients following the recommendation
• Both benefits and harms resulting from following or not following the recommendation

Then, the research team surveyed 2,321 people, randomly giving each person one of the messages and asking questions about their reactions to the message. The researchers sent messages about prostate cancer screening to men and messages about cervical cancer screening to women. The researchers sent the survey in English or Spanish to people from different backgrounds who were old enough to want or need the screenings. The researchers sent the survey to the same people eight weeks later, and 1,730 people completed the survey. The researchers looked at the responses from both surveys to see if people had a positive response to the messages and to see if the messages made them want to follow the USPSTF screening recommendations.

Findings

In the first part of the study, the team found that

• A little more than a third  of adults knew that health insurance plans were required by law to pay the whole cost for care rated with an A or B grade.
• Fewer than 1 in 10 people had heard of the USPSTF.
• One third of people said that they trusted a task force like the USPSTF to make fair recommendations.
• Almost 4 in 10 people thought that the government used recommendations about preventive care to limit health care.
• Most people thought that recommendations should be based on research evidence and that doctors should follow those recommendations.
• Less than 1 in 10 people thought that the recommendation alone was enough for a patient to decide whether to get care.

In the second part of the study, the researchers found that

• People who liked the message they saw about cancer screening were more likely to say they would look for more information about cancer or talk to their doctor about the screening than people who did not think the messages were important.
• People who saw messages that talked about harms resulting from not following a recommendation were more likely to say they would talk to friends and family about cancer screening tests or look for more information.

Limitations

The survey only showed what people said they would do in the future about getting preventive care. The researchers don’t know if people will actually do what they said they would.

Conclusions

The researchers learned that most people don’t know very much about the USPSTF or their recommendations about preventive care. The researchers also learned that people want medical advice based on research evidence.

The researchers also learned that the focus of a message about a recommendation may make a difference in whether or not patients plan to look for more information about it and whether people discuss the recommendation with their doctors or with family or friends.

Sharing the Results

The researchers published articles about the study in academic journals and gave presentations on the findings to organizations.

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

The Patient Protection and Affordable Care Act includes key provisions that attempt to increase the use of clinical preventive services, including a provision that most health insurance plans must provide first dollar coverage for specified preventive services, including those that receive an A or B rating from the US Preventive Services Task Force (USPSTF). Uncertainty and confusion among patients regarding guideline recommendations and the process used to create them is related to both over- and underuse of clinical preventive services. Thus, patient-centered, informed preventive care requires an understanding of the purpose, process, and results of evidence-based guidelines and how to interpret and use them for personal care decisions.

Project Purpose

With input and guidance from a patient-centric advisory board, the following were the primary aims of this research project:

• Aim 1: To conduct a nationally representative population-based telephone survey of US adults to document the range, prevalence, and covariates associated with knowledge and attitudes about USPSTF and some of its recent controversial changes in recommendations regarding cancer screening.
• Aim 2: To develop and pilot test communication frames/messages for patients regarding the USPSTF recommendations against prostate-specific antigen (PSA) screening for asymptomatic men and recommendations for less frequent Pap test screening for women, using an Internet-based experiment with a nationally representative sample of adults.

Study Design

Aim 1 employed a population-based online cross-sectional survey. Aim 2 was an experiment that involved random assignment to gender-specific communication messages/frames regarding a cancer screening test (PSA or Pap test), with an eight-week follow-up survey in a population-based online sample.

Participants, Interventions, Settings, and Outcomes

• Aim 1: Preliminary, formative data were collected through interviews with a nonrandom sample of 150 healthcare providers and seven focus groups. These data in turn informed the development of an online survey that was designed to collect data regarding Americans’ knowledge and attitudes related to clinical preventive services and their guidelines. The participants (n = 2,529) were a nationally representative sample of US adults ages 18 and older.
• Aim 2: Based on the findings from the Aim 1 survey, the study team developed an online population-based randomized controlled trial to compare responses to messages regarding recommendations against PSA and Pap test screening in some populations. Participants meeting age eligibility requirements were randomized to messages with different frames (gain, loss, or balanced frames) about PSA (men) or Pap test (women) screening. Participants (n = 2,321) were surveyed with randomly assigned exposure to different messages and surveyed again eight weeks later (n = 1,730, 59%). The main outcome variables were receptivity, or positive response, to the message and behavioral intentions (i.e., intention to follow the USPSTF screening guideline or not).

Data Sources

Primary data were collected through two separate surveys that were developed and implemented in nationally representative samples of adults through KnowledgePanel^®, a probability-based survey panel of approximately 60,000 adults, statistically representative of the US noninstitutionalized population. African Americans, Hispanics, and adults with less than a high school education were oversampled in each survey. Surveys were offered in English and Spanish.

Data Analysis

For both study aims, the survey data were weighted to take into account the sampling strategy. Statistical analyses were conducted using regression techniques.

Findings

• Aim 1 Study: Although 36.4% of adults reported knowing that the Affordable Care Act requires insurance companies to cover proven preventive services without cost sharing, only 7.7% had heard of USPSTF. Approximately one in three (32.6%) reported trusting that a task force would make fair guidelines for preventive services, and 38.2% believed that the government uses guidelines to ration health care. Most respondents endorsed the notion that research/scientific evidence and expert medical opinion are important for the creation of guidelines and that clinicians should follow guidelines based on evidence. However, when presented with patient vignettes in which a physician made a guideline-based recommendation against a cancer screening test, <10% believed that this recommendation alone was sufficient for patient decision making.
• Aim 2 Study: The analysis revealed that higher receptivity to messages about guideline recommendations against cancer screening was associated with greater intentions to seek cancer information and to speak to a provider about PSA or Pap tests. The loss frame (i.e., a message emphasizing negative aspects of not following a guideline, like unnecessary follow-up tests, anxiety, and so forth.) was associated with higher intentions to speak to friends and family about PSA and Pap tests. Finally, perceived importance and personal understanding of guidelines predicted intentions to seek more information about them.

Limitations

All information is self-reported. Reports of future behavioral intentions may not be accurate.

Conclusions

This study contributes to evidence on how best to inform and engage consumers regarding guidelines that recommend reduced use of screening tests compared to previous guidelines.

• Aim 1 findings showed that, given the demonstrated low levels of consumer knowledge, coupled with the strong preference for involvement in preventive care decisions, improved consumer education about evidence‑based guidelines for preventive services (including USPSTF) and improved decision-making supports are greatly needed. Results also suggest that appeals to medical experts and scientific evidence resonate with a significant portion of the US adult population.
• Aim 2 results offer insights into the comparative effectiveness of messages for PSA and Pap test decision making in the context of controversial changes to the guidelines. In addition, message receptivity appears to be a mediating variable between message framing and attitudes or adherence to preventive services guidelines.