For Lupus Warriors, trusting your instincts is the way to go.
You know the early warning signs of your flares. You know your triggers. And, you know when something doesn’t feel right with your body.
Lab tests measure your blood chemistry and can tell you what is happening in your body. Physical signs, such as the malar rash, are recognizable symptoms from the outside. However, your lived experience is still an important tool for you and your lupus treatment team.
Personal experiences are collected by a range of standardized surveys. These surveys, known as Patient-Reported Outcomes Measures (PROs or PROMs) can cover a range of topics including:
- mental health
- quality of life
- disease impact
- symptom assessment
- financial wellbeing
You can read more about them, here.
PROs are also used for other difficult to quantify diseases like rheumatoid arthritis, osteoarthitis, and fibromyalgia. These surveys accurately record a patient’s experience with lupus. Plus, for some, studies have been conducted correlating their results to disease metrics like intensity. Reported experiences are very consistent with a person’s actual inflammation, as confirmed with MRI.
Patient-Reported Outcomes and Flares
Flares have been a challenging area for lupus research over the years. A major challenge has been the discrepancy between patient-reported flares and traditional flare assessments.
Clinical rubrics, such as the SELENA-SLEDAI, require a certain change in overall score to determine a flare status. Points are assigned based on immunologic and objective measure. However, due to the scoring structure, a Lupus Warrior may experience an uptick in symptoms without meeting this flare threshold.
You may have experienced the discrepancy outside of research studies as well. By the time you get into see your rheumatologist, symptoms can fade. Then, your rheumatologist may not be comfortable suggesting treatment changes.
Lupus flares are known to dampen feelings of physical and mental well-being. PROs are a way to better understand the burdens that people are facing with lupus – and thus how to treat them. A July 2020 study in Quality of Life Research finds that PROs can open the door to better treatment.
The limitations of PRO surveys are that people have expectations about their symptoms, and are hampered by a sense of politeness. On these surveys, people often don’t mention less severe symptoms in an effort to “not waste the doctor’s time.” When you fill out a PRO, take the time to take a personal inventory and report as accurately as possible.
What Affects Quality of Life?
Patient reported outcomes provide a unique window into the factors that affect the quality of life for people with lupus. So, what do we see?
First, let’s look at depression and anxiety. PROs are a great way to screen for mental health symptoms in people with lupus. Depression and anxiety have a huge effect on quality of life, across all races. PROs can provide an early indicator, even just to yourself, that it may be time to seek additional support.
PROs also can help reveal risk factors for severe symptoms and other problems. In a representative sample of women with SLE, people considered medically obese (with a fat mass index of greater than 13 kg/m2 and a body mass index of greater than 30 kg/m2) were associated with worse PRO outcomes. These end points (goal measures of a research study) are more flexible and can identify variations in clinical experience.
The analysis involved 148 participants, 32% of whom were obese. Obese people had more pain, fatigue, and symptoms of depression than people with healthy body weights. The trouble is, of course, that these symptoms also interfere with weight control strategies; it’s difficult to exercise and eat healthy when you are in pain, low on energy, and depressed!
These are all quality-of-life measures that are not easily determined through other means. With PROs, doctors can hear them right from the patient’s mouths, and can track a patient’s quality of life over time and across treatments.
A Lupus Warrior’s Takeaway
Patient-reported outcomes are surveys that can change the game for people with lupus. They can turn your lived experience into a series of data points that your doctor can understand. As proven methods of determining SLE symptoms, PROs can nudge your doctors and treatment teams into action. Treating the issues and symptoms that you really care about and improving your overall quality of life.
Ask your treatment team about how you can use PROs to improve your care and your life. Also, look for tools that use research-validated PROs!
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