PROMIS10, a health survey by Patient-Reported Outcomes Measurement Information Systems, can measure and monitor important aspects of patients’ experiences with lupus that are not captured by standard questionnaires, a new study found.
This free, short-form survey may help optimize the management of systemic lupus erythematosus (SLE) based on patients’ own perception of their health.
The study, “Responsiveness of PROMIS Global Health Short Form in Outpatients with Systemic Lupus Erythematosus,” was published in the journal Arthritis Care & Research.
In chronic diseases like SLE, it’s not enough for healthcare providers to assess clinical outcomes. Instead, understanding how patients perceive their own health and quality of life is critical for providing the best care possible.
Collecting this information in a way that is reliable and truly informative requires tools — specifically questionnaires — that have been tested and shown to produce reliable measurements.
PROMIS10 is one such tool. According to researchers, “PROMIS10 combines items evaluating physical health, pain, fatigue, mental health, social health, and general health to provide a snapshot of global health through physical and mental health summary scores normalized to the general population.”
The 10-question survey is particularly attractive for its briefness — it takes less than 2 minutes to complete — and cheapness — it’s available for free. However, whether it is responsive to changes in patients’ perceived health over time has not been tested.
To learn more, the researchers recruited 223 people with SLE (91.2% female, 38.2% white, median age 37 years) and had them complete the questionnaire at one visit. Then, a median of 3.7 months after this first assessment, 186 of these patients completed the questionnaire again. At this time, the participants were also asked to rate their health as “better,” “same,” or “worse,” independent of their responses to PROMIS10.
The researchers then compared the first and second PROMIS10 responses while taking into account the participants’ reported overall perception of their health. The team specifically calculated effect size, which is basically a measurement of whether two groups are statistically different or not.
The effect sizes for PROMIS10 mental and physical health both were 0.29 for patients who reported better health. For those that reported worse health, the effect size was -0.54 for mental health and -0.27 for physical health. Effect sizes were 0.00 for individuals who reported that their health had not changed.
These values suggest that PROMIS10 scores changed significantly in line with patients’ perception of their own health. The scores increased for those that felt better, decreased for those that felt worse, and not did not change among patients who perceived no change. Other similar statistical tests yielded comparable results.
In addition to PROMIS10, the researchers had the participants take another survey that has already been validated, for comparison. That survey is called the Short Form-36 (SF36). As found with PROMIS10, the SF36 scores changed significantly with changes in patients’ perceived health. The researchers noted that the effect sizes were smaller, ranging from 0.15-0.23, which suggests that PROMIS10 may be more responsive to changes in patient health.
Lastly, the researchers performed a similar analysis, but used physician assessments instead of the patients’. Instead of grouping participants based on their perceptions of health change, the investigators used the patients’ physicians’ assessments of such changes, as measured by the Physician Global Assessment (PGA) and SELENA-SLEDAI.
Neither the PROMIS10 scores nor the SF36 scores correlated with these measurements. That suggests that patient-reported changes over time don’t really line up with physician-reported changes — which may be all the more reason to take both into account when making medical decisions.
“By demonstrating the validity and responsiveness of PROMIS10 in this population of patients with SLE, our study supports its potential utility in clinical care,” the researchers said.
“For patients with SLE, who are often seen and treated by many specialists due to the impact of this disease on multiple organ systems (e.g. rheumatology, nephrology, orthopedics, dermatology, ophthalmology), PROMIS10 provides a brief yet accurate ‘bottom line’ measure of well being that can be followed longitudinally across the spectrum of health care,” they added.