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

Knowing what is important to patients being treated for back or stomach pain—and how they feel about their experience—can help doctors to give better care. But there is little research about what’s most important to patients or how to obtain this information.

Project Purpose

Researchers wanted to find out what information was most important to patients who got a computed tomography (CT) or magnetic resonance imaging (MRI) scan for back or stomach pain. The researchers also wanted to get feedback from family members. The researchers planned to compare the opinions of the patients, caregivers, and doctors.

The researchers then wanted to figure out the best place to find the information that patients want.

Methods

The team did interviews and surveys with 40 patients who had recently undergone CT or MRI scans for back or stomach pain. They also interviewed 11 family members. To find participants, the research team randomly called patients at a large healthcare practice in Minnesota.

The patients and family members identified possible outcomes from their health problem and its treatment. They rated the importance of each outcome on a scale of 1 (not at all important) to 5 (extremely important). The research team looked at the patients’ electronic health records and insurance claims to find out what outcomes they had experienced.

Later, the researchers called 367 patients (201 with stomach pain, 166 with back pain) and asked questions about whether the outcomes that mattered most to them had actually happened and if they were satisfied with their care.

Findings

Patients and family members strongly agreed that each of the following 21 outcomes was important:

• Find out the cause of the pain
• Trust that the treatment plan is appropriate   
• Return to normal life functions
• Feel satisfied with results of care
• Understand what may happen because of the problem
• Prevent this problem from occurring again
• Prevent long-term loss of function
• Return to work and productivity as soon as possible 
• Feel satisfied with how care was delivered
• Experience no complications or side effects
• Be assured that no unexpected or unrelated problems develop
• Get rapid and complete relief from pain and other symptoms
• Avoid being hospitalized
• Avoid surgery
• Avoid placing a burden or stress on family members
• Minimize or avoid the need for further tests and medical visits
• Minimize radiation exposure in the course of care
• Avoid personal costs for care
• Minimize or avoid use of medication
• Return to leisure and sports activities as soon as possible
• Minimize discomfort from the tests used to assess the pain

In phone surveys, most patients told the researchers that, in most respects, they had received the care they wanted. Patients who got at least seven of the outcomes they wanted were more likely to say they were satisfied with their health care.

Patient surveys were the best way to find out most of the outcomes that are important to patients. Only a few of these most important outcomes were also listed in patients’ electronic health records. A few outcomes could best be found in insurance information.

For most of the outcomes that were deemed most important to patients, medical records or claims data were not adequate sources of information.

Limitations

This study included only a small number of patients, and most of the patients in this study were similar to each other—for example, most were well educated. All of the patients had one of the same two health problems. The findings may be different for a larger group or for different kinds of patients.

Conclusions

The outcomes that matter most to patients with back and stomach pain are not usually found in electronic health records or insurance claims.

Sharing the Results

The research team has published journal articles on the study (see below). The research team plans to set up a new system in the medical practice where the study was done. It will make it easier for doctors to get and use information that’s important to patients. The team also presented the findings to local medical groups.

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

Although there is currently great interest in measuring and using patient outcomes to improve care and patient experience, very little is known about what outcomes are important to patients and even less is known about how to most efficiently and accurately obtain information about these outcomes.

Project Purpose

This project was designed to identify the outcomes important to patients (and their family members) with abdominal or back pain, and to compare patient and physician opinions about the importance of each outcome.

The research team’s objectives were to

1. Identify the kinds of outcome information desired by patients who have had an advanced imaging test (CT or MRI scan) for abdominal or lower back pain
2. Use multiple data sources, including patient surveys, health insurance claims data, and both discrete data and unstructured text in the electronic health record (EHR) to quantify the information about these outcomes
3. Determine where the information that patients want to know is best obtained

Study Design

Interviews and surveys of patients with back or abdominal pain followed by comparison of their reports with information in EHR and insurance claims.

Participants, Interventions, Settings, and Outcomes

Patients from one large medical group with accessible insurance records and a recent advanced imaging test for back or abdominal pain were randomly identified and contacted by phone for interviews and surveys. Some family members were also interviewed. The patients were all cared for in a large multispecialty medical group in Minnesota that was part of a health system with its own health insurance program.

Outcome measures included the occurrence of 21 outcomes important to patients and the degree to which this information was concordant between patient reports and data in the EHR or insurance claims.

Data Sources

The research team compared information from patients about the outcomes relevant to their back or abdominal pain that they regarded as important with data about the same outcomes from audits and electronic searches in their EHR and insurance claims.

Data Analysis

Statistical analyses were conducted to test the degree to which data found in the EHR corresponded to that obtained from patients. For those outcomes known only to the patient, the research team compared EHR data to patient survey data; for insurance covered events, the research team compared the EHR data to claims data.

Findings

There was a high degree of agreement among the 40 patients and 11 family members surveyed that each of the 21 outcomes was important (greater than 3.0 on a scale of 1 to 5). Patients and family members wanted to

• Find out the cause of the pain
• Trust that the treatment plan is appropriate   
• Return to normal life functions
• Be satisfied with results of care
• Understand what may happen to you because of the problem
• Prevent this problem from occurring again
• Prevent long-term loss of function
• Return to work and productivity as soon as possible
• Be satisfied with how care was delivered
• Experience no complications or side effects
• Be assured that no unexpected, unrelated problems develop
• Get rapid and complete relief from pain and other symptoms
• Avoid being hospitalized
• Avoid surgery
• Avoid placing a burden or stress on family members
• Minimize or avoid the need for further tests and medical visits
• Minimize radiation exposure in the course of my care
• Avoid personal costs for care
• Minimize or avoid use of medication
• Return to leisure/sports activities as soon as possible
• Minimize discomfort from the tests used to assess the pain

Telephone surveys of a subsequent sample of 367 patients found that most patients had achieved most of the desired outcomes. Achieving seven of the outcomes was associated with greater satisfaction with care received. Of the 16 outcomes where patients’ survey responses were considered to be the best information source for comparison, only 2 or 3 were significantly associated with EHR data. Of the other 5 outcomes for which claims data were considered to be the best information source for comparison, 2 outcomes from patient surveys and 3 outcomes from chart audits were significantly associated with EHR data.

Limitations

This study had a relatively small sample size, suggesting the need for others to verify these findings with larger samples. Similarly, this study included a relatively homogeneous and well-educated population with only two medical problems, so the findings may not be generalizable to other groups of patients and conditions.

Conclusions

For the outcomes that this study identified as important to patients, medical record and claims data did not provide an adequate source of information. An exception was patient-reported outcomes that could be less accurate than claims/EHR data, for example data on dates of service.