Patient-Reported Outcomes (PRO), LupusPRO, and Lupus

Measuring lupus pain, fatigue, and other symptoms over time is hard. Patient-reported outcomes (PROs) are self-reports from patients that can help diagnose and manage the disease.

Patient-reported outcomes use surveys to measure lupus. Mostly, these surveys identify the physical symptoms of lupus. But also helps researchers and doctors identify the true concerns of people with lupus. It is important to prioritize how a Lupus Warrior is feeling and their health priorities in addition to more easily measured physical symptoms of lupus.

You can read more about how lupus patient priorities can differ from clinicians here.

There are many different types of surveys including LupusPRO, Lupus Impact Tracker (LIT), and Body Image Lupus Screen (BILS). Each one looking at different aspects of the lupus experience. The surveys can be specific to systemic lupus erythematosis (SLE) or more general. Survey questions reflect the lupus experience in a standardized way. That is key.

The patient reported outcomes in these surveys have been compared against known clinical measurement methods. This includes SELENA-SLEDAI and the SLICC/ACR damage index, and appear to match up well. They have also been tested in focus groups representing multiple ethnicities, genders, and languages, and they to be a good cross-cultural measure of lupus.

You can read more about lupus measurement and predicting symptoms here.

What is LupusPRO?

LupusPRO is a 49-question survey that looks at health-related quality of life. One of the few that directly evaluates brain fog, pain, pregnancy concerns, fatigue, lupus medications and side effects. It also asks questions about less tangible topics like:

• satisfaction with care
• thoughts about body image
• feelings about work
• personal desires and goals
• social support
• coping with lupus

Using gender-neutral language, the test seeks to be a universal and respectful tool for collecting patient-reported outcomes.

With some modifications, LupusPRO has proven to be reliable and able to encompass the lupus experiences of other ethnicities and genders.

What is the value of patient-reported outcomes?

Clinicians and researchers use patient-reported outcomes. They measure both the symptoms of lupus and the personal impact of the autoimmune disease. Researchers see how people with lupus really feel about their lives with these surveys.

Research using the SLE Severity Diary (SSD) and the SLE Impact Questionnaire (SIQ) identified areas of disease impact. The most frequently reported issues related to chores and housework.

This helps doctors and researchers see the beyond the organ damage and clinical conditions that come with lupus, to the person with lupus themselves. Patient-reported outcomes make your priorities heard.

When people with lupus, clinicians, and researchers have the same priorities, then both research and treatment becomes more efficient. Patient-reported outcomes are a very powerful tool and a good part of every Lupus Warrior’s arsenal!