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 work with their primary care doctors when they need help managing pain. Sometimes it is hard for a doctor to know what kind of pain a patient has, how much the pain is bothering the patient, or what activities they cannot do because of their pain. It’s important to find ways to help primary care doctors understand the problems caused by pain and what is most important to the patient in managing pain.

Project Purpose

The goal of this study was to find out whether having patients with chronic pain complete a brief survey (MySupport) when they see their doctor could help doctors better understand the problems caused by pain. The study also asked if patients taking the survey saw more improvement in managing problems related to pain than patients who did not take the survey.

Methods

The research team asked 100 patients from a clinic in the Pacific Northwest to participate in the study. To join the study, patients had to be age 18 or older, taking medicine for chronic pain, and living with a complicated condition like a mood disorder or fibromyalgia. Patients with cancer, patients who were getting end-of-life care, and patients with substance-use disorders were not included in the study.

The research team randomly assigned the patients to one of two groups. Patients in one group filled out the MySupport survey before every doctor visit over a 10-month period. Patients in the other group did not fill out the survey.

The MySupport survey asked patients about the physical or mental problem that was bothering them the most. It asked them

• How much the problem bothered them in the past week
• How many days in the past week they had been bothered by this problem
• How long the problem lasts when they have it
• One activity (physical, social, or mental) that is important to them that they had not been able to do because of the problem
• How well they can do that activity now and what it would be like if their problem got worse or better

The research team called patients to remind them to fill out the survey before each doctor’s visit. The doctor got the survey answers before the patient’s visit. The doctor went over the survey answers with the patient during the visit.

The research team used the doctor’s notes from the visit as well as other surveys to collect information about

• How patients rate their pain
• What other symptoms they have
• How satisfied they are with their care
• How they deal with their pain at home

The research team looked for patterns in patients’ survey answers and the notes from their patient records. They then compared the progress of the patients who completed the MySupport survey with the patients who did not.

Findings

Patients who completed the survey reported that they did more self-care activities and had better quality of life and more satisfaction with the care they received in the first five months of the study than those who did not complete the survey. Patients who completed the survey also reported less bothersome pain and fewer problems doing activities they liked over the 10 months of the study. Patients and doctors both reported that the MySupport survey made it easier to talk about pain during office visits.

Limitations

This study only involved a small number of people. This makes it harder to know if the findings are true for all people with chronic pain. Some of the improvements reported by patients may have been the result of something other than using the MySupport survey.

Conclusions

The MySupport survey may be useful for helping primary care doctors to better understand and manage the pain being experienced by their patients. Doctors and patients who share more information may be able to do more to help symptoms get better over time.

Sharing the Results

The research team has presented the results of this study at conferences. A written summary of the study and its findings and a video are available on the American Chronic Pain Association website.

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 patients primarily seek general medical care for pain, primary care providers (PCPs) face challenges in managing this care. Research suggests that how well patients manage chronic pain depends as much on what they do as on what is done to them. Patients recognize the importance of self-management strategies, yet support and validation of their efforts by their healthcare providers is critical. Tools that help patients identify issues and provide clinicians with the necessary information at the point of care are essential.

Project Purpose

This study sought to adapt the Measure Yourself Medical Outcome Profile (MYMOP), a validated, patient-generated assessment instrument designed to be applicable to a wide range of medical conditions, for use by patients with chronic pain and to optimize the tool for use in routine primary care encounters. Researchers evaluated a patient-stakeholder-vetted version of the MYMOP for chronic pain (the MySupport tool) for use in routine primary care encounters—its acceptability, feasibility, and the degree to which the tool would provide information not available through routinely used symptom and quality-of-life measures. Further, the research team evaluated whether the use of the MySupport tool resulted in improvements in patient symptoms and functioning over time as well as increased satisfaction for patients and PCPs with pain-related care.

Study Design

Pilot randomized controlled trial with a substantive formative evaluation component.

Participants, Interventions, Settings, and Outcomes

Patients included adults (≥18 years of age) receiving long-term opioid treatment for chronic pain and living with a more complex condition (characterized by a mood disorder or widespread pain condition such as fibromyalgia). Exclusions were limited to evidence of a malignant cancer diagnosis, current end-of-life palliative care, or current substance use disorder.

The pilot study was conducted within 2 of the 18 primary care clinics in Kaiser Permanente Northwest (KPNW), a health maintenance organization serving approximately 525,000 members in Northwest Oregon and Southwest Washington.

Patients randomized to the intervention arm of the study completed the MySupport form prior to each primary care appointment during the 10-month course of the study. The tool asks patients to (1) record in their own words the nature of the physical or mental problem bothering them the most and to rate how bad the problem had been for them in the last week, (2) indicate how many days in the past week they had been bothered by this problem, (3) indicate the duration of the problem, (4) identify the one activity (physical, social, or mental) of importance to the participant that the problem made it difficult to partake in, and (5) indicate their current ability to perform this nominated activity as well as what it would be like if it was “a bit worse, a bit better, even better, or much better” using a goal attainment scaling format. The tool allows for quantitative tracking over time of both the severity and functional elements of the patient-prioritized outcome. The completed instrument was provided to the PCP prior to the scheduled primary care visit. Those randomized to the comparison group received treatment as usual. Randomization was at the patient level and stratified on gender and clinic using randomly sized blocks of 10–20. One hundred patients were randomized into the study—50 into the MySupport arm and 50 into usual care. All participants completed the study and were included in the data analysis.

Changes in patient-prioritized functional outcomes on the MySupport tool were tracked over time for those in the MySupport arm of the study. Other outcome measures collected on all study participants included (1) those to evaluate pain (BPI-SF, pain bothersomeness scale), (2) those to evaluate related symptoms and functioning (PHQ-8, GAD-7, ISI, EuroQol 5-D, and PAM), (3) questions to measure patient satisfaction with care (CARE and three questions assessing satisfaction with care more globally [overall, pain-specific services, perceived helpfulness of pain-related services]), and (4) reported self-care activities.

Data Sources

In addition to self-assessment, data were obtained from participants’ electronic medical records.

Data Analysis

The research team estimated generalized mixed models using maximum likelihood estimation with a structured covariance matrix to accommodate missing data and to adjust for correlations between assessments, respectively. For qualitative data analysis, each team member independently reviewed and summarized qualitative transcribed data with the goal of identifying emergent patterns. The team agreed on key themes through an iterative group review process.

Findings

Quantitative analyses showed a differential increase in the intervention group for reported self-care activities, health-related quality of life, and satisfaction with care in the first five months of the study. Pain bothersomeness and interference as well as sleep impairment showed more improvement among those in the intervention group during the 10-month course of the study. Qualitative findings suggested the tool met patients’ and providers’ expectations and often enhanced the encounter and patient-provider communication. This, together with the fact that the tool was completed before 73 percent of the eligible primary care visits, suggests acceptability and feasibility of the tool for use in routine primary care encounters.

Limitations

It is not possible to conclude that outcomes were solely due to the use of the MySupport tool or at least in part due to the additional attention those in the intervention received through telephone calls to complete the instrument. Because of the hypothesis-generating focus of this pilot study, researchers did not adjust for multiple comparisons, so some findings could be spurious.

Conclusions

The MySupport tool may be useful as both a patient-centered assessment tool and to improve satisfaction by patients with chronic pain and their providers in primary care encounters.

Dissemination

The American Chronic Pain Association published a written and video description of the study and summary of the findings on its website. In addition, the researchers presented the research to professional audiences and submitted manuscripts to journals.