Kelly Gavigan, MPH: Patient-Reported Outcome Scores During the COVID-19 Pandemic

Rheumatology Network spoke with Kelly Gavigan, MPH, to discuss her upcoming ACR presentation entitled, “Changes in Patient-Reported Outcome (PRO) Scores During the COVID-19 Pandemic: Data from the ArthritisPower Research Registry.” Kelly is the manager of research and data science at Global Healthy Living Foundation and works on patient-centered research through Global Healthy Living Foundation’s online patient research registry called ArthritisPower. She discusses the importance of patient wellness and wellbeing throughout the pandemic, the key findings of the study, and the clinical significance of these results.

Rheumatology Network: What first sparked your team's interest in determining patient-reported outcomes during the pandemic?

Kelly Gavigan, MPH: We knew pretty early on in the COVID-19 pandemic that patients with autoimmune and rheumatic disease are at an increased risk of infection for COVID-19. And since many patients as a result followed strict social distancing protocols, this created a heightened sense of isolation. And so, we wanted to better understand whether the patient-reported outcomes scores for mental, social, and physical health fluctuated throughout the COVID 19 pandemic as the result of this.

RN: What study design did your team utilize to determine changes in this patient population?

KG: We tested the null hypothesis that there was no change in the monthly average Patient-Reported Outcomes Measurement Information System (PROMIS) scores across the 15-month observation period, which was January 2020 to April 2021. We did an assessment of the analysis of the mean. We had the mean score for each assessment throughout the 15-month period. And then we looked at each month during the 15-month period to see if during that month, the mean score was significantly different, either better or worse, compared to the overall mean score for that assessment.

RN: And what were your findings?

KG: So, we ended up looking at outcomes or assessment results from over 2200 participants, and each participant contributed an average of 4.5 observations. And we found that the scores for anger and anxiety were 1 standard deviation higher than the overall study period mean and the depression scores were 1/2 standard deviation worse than the overall study period mean for the months of May and June in 2020. And similarly, social isolation scores were highest in June and the emotional support scores worsened in December of 2020. We also looked at the physical health scores throughout this time period and found that the physical health assessment scores did not meaningfully vary from the overall mean throughout the observation period. So, it was really the mental health in the anger, anxiety, and depression scores, and social health in the social isolation and emotional support scores that did significantly vary during this period.

RN: Were you surprised by the results of the study?

KG: It was clear that mental health and social health fluctuated during the 15 months that we observed and I wouldn't say that was entirely surprising, especially when looking at how significantly anger, anxiety, depression, and social isolation increased in the month of May and June. Just considering what was going on in the country during that time that kind of corresponds with the first wave of the pandemic. And also, a point when, especially in June, when there was this realization that the pandemic was not going away very easily or very quickly. So, it's very understandable to see anger, anxiety, depression, social isolation all increased during that time and throughout the 15-month observation period. We were certainly surprised that the scores for physical health, the physical health assessments, didn't meaningfully vary during the time. However, it was definitely reassuring to us that the participants disease wasn't worsening during this period on top of everything else going on.

RN: What is the clinical significance of these results?

KG: I think that it's very important that the mental health concerns and the social support of rheumatic disease patients gets attention by their providers and by their caregivers during this time. And I think that that's not something that can be set aside or overlooked, especially considering that participants physical health, during at least the observation period that we studied, didn't seem to fluctuate very much. It's easy to think that patients are doing just fine. But it's very clear from the results of this study that their mental health and their social wellbeing took a toll.