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

When completing health surveys, older adults often require help from someone else. A person who completes a survey on someone else’s behalf is called a proxy respondent. Researchers who analyze survey responses generally note whether or not the survey was completed by a proxy respondent. But researchers often don’t know whether the proxy respondent filled out the survey for the patient or just helped the patient do it. For example, a proxy respondent might help by reading questions aloud to a patient and then recording their answers. Also, researchers often don’t know who the proxy respondent was—a family member, friend, or someone else. So researchers don’t know what effect different proxy respondents might have on survey answers, including for patient-centered outcomes research.

Project Purpose

This study had three goals:

  • See how well patients’ and proxy respondents’ answers to survey questions about the patient’s disease history and medical care matched Medicare claims information
  • Learn whether the patient’s and the proxy respondent’s answers were the same or different for specific health outcomes
  • Identify whether any differences in answers continued or changed over time

After completing the first and second goals, the research team realized that the third goal was not possible in a two-year project. Instead, the team decided to study how well patients’ responses about their own health behavior matched what their spouses reported on their behalf.

Findings

Responses from both patients and proxy respondents were most likely to match Medicare claims on health conditions that needed invasive treatments or constant monitoring, such as diabetes or glaucoma. Survey responses from both proxy and patient respondents were least likely to match the Medicare claims for care that took place often (such as doctor’s visits). Responses from both proxy respondents and patients also tended to be different from Medicare claims for diseases or treatments that doctors and patients might define differently (for example, arthritis or minor surgery in a doctor’s office).

Patients who filled out the survey themselves tended to report having fewer health conditions and receiving less health care than they actually did. People who filled out the survey for patients tended to report more health conditions and healthcare use than was actually recorded in the Medicare claims.

When husbands and wives filled out the survey for each other, the difference between their answers and the Medicare claims was about the same as it was when patients filled out the survey themselves. Both groups tended to report fewer health conditions and less healthcare use than was recorded in Medicare claims.

When people who were not patients’ spouses filled out the survey, their responses were more likely to be similar to the Medicare claims. This was particularly true for sons-in-law and daughters-in-law.

Patients who scored high on thinking ability (the ability to process information) tended to complete their surveys with fewer differences from the Medicare claims. This finding is similar to results the researchers had found in other studies.

In interviews, married couples who answered survey questions about each other were more likely to give similar answers about some activities than about others. The answers tended to agree on activities done every day, health conditions, hospital stays, surgeries, preventive treatments, and how well a person could move around. Spouses’ responses differed more often when asked to rate health or report on visits to the doctor or dentist.

Limitations

First, the research team was able to report only on health conditions or treatments that were in both the AHEAD survey and Medicare records. Second, respondents who completed the survey themselves had good thinking abilities. People with lower thinking abilities may have had more errors. Finally, the research team did not know why someone served as a proxy respondent for a spouse, parent, or in-law. These reasons might have provided more insight into the differences and similarities of the survey responses.

Conclusions

Researchers should record who is filling out their study’s health surveys so they can compare responses of people who complete surveys themselves to responses given by spouses, children, and other proxy respondents. Future health surveys should also include a short list of questions to assess respondents’ mental status. This is especially important if the survey responses cannot be compared with medical records or Medicare claims.

Sharing the Results

The research team published journal articles about the research (see below).

Project Information

Fredric D. Wolinsky, PhD, MA, BA
University of Iowa
$637,901
Methodologies to Adjust for Respondent Status Effects on Health Outcomes

Key Dates

June 2012
December 2014
2012
2014

Study Registration Information

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Last updated: April 11, 2024