Making the Patient-Reported Outcomes Measurement Information System Meaningful to Patients and Providers in Clinical Practice [Methods Study], United States, 2014-2019 (ICPSR 39509)
Patients and their healthcare providers, such as doctors and nurses, can use survey scores to track the symptoms of illnesses like rheumatoid arthritis, or RA, over time. Tracking symptoms in this way can help them understand if a treatment is working well for a patient.
When researchers create and test these surveys, they want to be sure that patients' survey scores match how severe patients feel their symptoms are. Researchers also want to know what changes in survey results show that symptoms have changed so much that patients might want to change treatment.
In this study, the research team had patients with RA and providers read stories that described what patients felt like with higher and lower scores of two symptoms:
- Fatigue, or lack of energy
- Pain interference, or how much pain interferes with their lives
Patients and providers decided whether each story showed a mild, moderate, or severe level of symptoms. They also gave their views about how large a change in scores would need to be to show that pain or fatigue was getting better or worse.