DOI: 10.3886/icpsr39509
title: Making the Patient-Reported Outcomes Measurement Information System Meaningful to Patients and Providers in Clinical Practice [Methods Study], United States, 2014-2019
title: Archival Version

description: 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.
description: To estimate thresholds for mild, moderate, and severe levels of rheumatoid arthritis(RA) symptoms as measured by the PROMIS Pain Interference and Fatigue scores and to estimate changes in PROMIS scores that indicate clinically meaningful changes in symptoms based on patient and provider assessment. This study had three interlocking aims:

Evaluate the relevance, comprehension, and comprehensibility of items on a set of PROMIS
short forms in people with RA (content validation).
Estimate minimally important differences (MIDs) in PROMIS scores (observational cohort).
Seek consensus among patients and providers on how much change reflects meaningful improvement or worsening of specific symptoms (bookmarking activity).
description: The research team created a series of patient vignettes describing the level of symptoms that a hypothetical patient would experience if they had a specific PROMIS score. PROMIS scores have a mean of 50 and a standard deviation of 10 in the general US population. For example, a vignette for a PROMIS fatigue score of 62 might describe a person as rarely having enough energy for strenuous exercise and often feeling too fatigued to plan for future activities. The team created one set of nine vignettes for PROMIS measures of pain interference and another for measures of fatigue.
The research team had patients and providers go through three scenarios. First, the team sorted the vignettes from least to most severe and presented the set of vignettes to the patients and providers. Patients and providers then indicated where they felt transitions between vignettes showed an increase in symptom severity (for example, from moderate to severe symptoms).
Second, patients and providers viewed another set of vignettes arranged from high to low levels of either pain or fatigue. Starting with a vignette with high symptom levels, patients and providers suggested which subsequent vignette would show that a treatment was working. Third, patients and providers viewed a vignette representing a low level of either pain or fatigue and suggested which subsequent vignette would indicate symptoms worsened so much that a change in treatment should be considered.
The research team recruited 11 patients receiving treatment for RA and eight rheumatology providers. Of the patients, six were white, three were black, one was Asian, and one was mixed race. The average age was 55. On average, patients had RA for 20 years. Providers included physicians, nurses, and psychologists. All providers were white, with an average age of 49.
description: Datasets: 
DS1: Making the Patient-Reported Outcomes Measurement Information System Meaningful to Patients and Providers in Clinical Practice [Methods Study], United States, 2014-2019
description: Patients with rheumatoid arthritis.