Results Summary
What was the research about?
Patient-reported outcome measures are surveys that ask patients how they feel and what activities they can do. These surveys ask about things such as how well people sleep and how much their pain interferes with daily life.
In this study, the research team wanted to learn if two clinics could gather patient-reported outcome measures during routine care visits, and if patients with type 2 diabetes could use the results to set goals for improving their health. The research team also wanted to learn if patients and clinic staff saw value in using these measures.
What were the results?
The two clinics were able to collect patient-reported outcomes measures. About 26 percent of patients who the research team asked to join the study took the survey during their first clinic visit. Of these patients, 73 percent took the survey again three months later.
Patients at the two clinics had different results for setting a health goal. At one clinic, 40 percent of patients who took the first survey set a health goal. At the other clinic, 90 percent of patients who took the first survey set a health goal.
In interviews, patients and clinic staff said that using the results of the surveys could improve communication with doctors. They also said the survey results led to changes in patients’ care and helped patients stay involved in their care. However, both patients and clinic staff said the survey questions needed more explanation. Clinic staff also wanted more training and support for collecting surveys and setting goals with patients.
Who was in the study?
The study included 1,864 patients with type 2 diabetes. Patients came from two clinics with diverse patient populations. The first clinic was in Connecticut. At that clinic, 59 percent of patients were Hispanic, 23 percent were white, and 11 percent were African American. About 71 percent of these patients were eligible for Medicare and Medicaid. The second clinic was in Oklahoma. At that clinic, 8 percent of patients were Hispanic, 61 percent were white, and 26 percent were African American. About 65 percent of these patients were able to receive Medicare and Medicaid.
What did the research team do?
Patients took a 29-question survey on paper during a clinic visit. The survey asked about their health and how illness affects their daily lives. Then patients talked about setting health goals with a clinic staff member who had reviewed their surveys. The research team looked at patients’ health records for other kinds of information. After three months, the research team asked the patients to take the survey again. At the same time, the patients talked with a clinic staff member about progress on their goals. Finally, the research team asked patients and clinic staff members if they thought the survey data were useful. A team of patient advisors gave the research team feedback throughout the study.
What were the limits of the study?
The study included patients from only two clinics. Also, each clinic made up its own ways of giving patients the survey and setting goals, which may explain differences between the clinics. Results may be different for other clinics.
Future research could test using the surveys in other clinics and locations. Also, future research could look into ways to better prepare patients and care teams for using the measures.
How can people use the results?
Clinics could try collecting patient-reported outcome measures to see if their results are useful for routine care of patients with type 2 diabetes.
Professional Abstract
Objective
(1) To evaluate the feasibility of collecting and using patient-reported outcome measures (PROMs) in routine care for patients with type 2 diabetes; (2) To assess the perceived meaning and value that patients and care-team members see in using PROMs for care planning
Study Design
Design Elements | Description |
---|---|
Design | Feasibility study |
Population | 1,864 patients with type 2 diabetes |
Interventions/ Comparators |
Using PROMIS-29 v2.0 surveys in routine care |
Outcomes |
Primary: patient participation in PROM data collection, goal setting, and follow-up Secondary: perceived meaning and value of using PROMs for care planning |
Timeframe | 3-month follow-up for primary outcomes |
The research team conducted a study of the feasibility of using PROM data to help patients with type 2 diabetes set goals for improving their health. PROMs help clinicians understand patient perspectives about their health and amplify the patient’s voice in clinical discussions. The study used the Patient-Reported Outcomes Measurement Information System Profile (PROMIS-29 v2.0) survey, which measures five outcomes: physical function, depression, sleep disturbance, ability to participate in social roles and activities, and pain interference. A team of patient advisors provided feedback on the study design throughout the study.
The study included 1,864 patients with type 2 diabetes. Patients were from two sites serving diverse patient populations: a federally qualified health center in Connecticut and an academic health center in Oklahoma. In Connecticut, 59% of patients were Hispanic, 23% were white, and 11% were African American. Spanish was the preferred language for 38% of patients. In Connecticut, 71% patients were Medicare/Medicaid eligible, 19% had commercial insurance, and 10% were uninsured. In Oklahoma, 61% of patients were white, 26% were African American, and 8% were Hispanic. Spanish was the preferred language for 3% of patients. In Oklahoma, 65% patients were Medicare/Medicaid eligible, 29% had commercial insurance, and 6% were uninsured.
The sites modified their existing primary-care-visit workflow to include the intervention. During initial visits, patients completed the PROM survey on paper and had a goal-setting discussion with a member of their care team. After three months, the clinics asked the patients to complete the survey again and discuss progress on their goals with their care team. Finally, the research team interviewed patients, clinicians, and care managers about their views on gathering and using PROM data in the care setting.
Results
Patient participation in PROM data collection, follow-up, and goal setting. A total of 490 patients (26% of participants) completed the initial survey. Of these patients, 356 (73%), provided follow-up data. In Connecticut, 40% of patients set a health goal. In Oklahoma, 90% of patients set a goal.
Perceived meaning and value of PROMs. In interviews, patients and care-team members reported that PROM data could improve communication and lead to better engagement and specific care changes. However, both patients and care team members noted a need for better explanations of PROMs. Care-team members at both sites also stated a need for training and resources to conduct data collection and goal-setting conversations.
Limitations
The study took place at only two sites, included only patients with type 2 diabetes, and used a single PROM survey, all of which limit generalizability of the findings. The timing of follow-up data collection varied due to the busy environment of the health centers, which may have caused differences between individual follow-up PROM responses.
Conclusions and Relevance
Collecting PROM data for goal setting during routine care of patients with type 2 diabetes is feasible but challenging. Patients and clinical care teams reported that PROM data could improve communication. However, implementation challenges remain to incorporate data collection, results reviews, and goal setting into clinical workflows.
Future Research Needs
Future research could explore the feasibility of PROM data collection in different settings, with different populations, or using different methods, such as via electronic health records. Future research could also examine ways to address implementation challenges
Final Research Report
View this project's final research report.
Journal Citations
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.
In response to peer review, Scholle made changes including
- Revising the Abstract, Discussion, and Conclusions to clarify that the results of the study should be considered exploratory because this was a pilot study, and the results likely are not generalizable
- Revising the report generally to make the language clearer, and providing a clearer link between the qualitative and quantitative aspects of the study
- Clarifying decisions made around adding and removing covariates from the analysis model
- Providing more information about the study settings, care teams, and target population in order to provide more evidence regarding external validity of the study