Manuel Francisco Ugarte-Gil, MD, MSc, explains the impact that severe flares have on health-related quality of life for patients with systemic lupus erythematosus.
Rheumatology Network interviewed Manuel Francisco Ugarte-Gil, MD, MSc, to discuss his recent study “Severe flares are associated with a poorer health-related quality of life (HRQoL) in patients with SLE: data from the Almenara Lupus Cohort.” Ugarte-Gil is a Researcher in Rheumatology at the Hospital Nacional Guillermo Almenara Irigoyen, EsSalud, Lima, Peru, and Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas, Universidad Científica del Sur.
Rheumatology Network: Why do you believe disease activity has been minimally associated with health-related quality of life up until this point?
Manuel Francisco Ugarte-Gil, MD, MSc: I think this is because disease activity has different manifestations. For example, renal involvement doesn't make the patient feel pain or fatigue or things like that. But, for example, malar rash rush is going to make a patient feel uncomfortable and their quality of life is going to be deeply affected. We feel that somebody with a renal involvement is worse, and we rate them higher, but a patient with a malar rash feels worse, and she/he rates her/his health-related quality of life higher. So, we use steroids, and feel that we are improving the disease activity, because renal involvement is going to be reduced, but the patient is going to feel worse when we think that they are better. That's the main reason that why this activity was not associated with health-related quality of life, or at least not as much as we expected, or as much as we seen in other diseases like rheumatoid arthritis.
RN: Can you tell me a bit more about the study design and the inclusion criteria?
MU: It was a prevalent lupus cohort here in Peru and we included adult patients with SLE without any other autoimmune disease. The cohort started in 2012 and the visits were done every 6 months. Patients had to assess several patient-reported outcome measures, like lupus-related fatigue, work fatigue, impairment, etc. For this study, we defined flare as an increase of at least 4 points in Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) between 2 visits. That definition was based on the original report from investigators in Toronto and 1 previous report from our cohort. The idea here was to evaluate if a patient has a flare today, or within this period, is the health-related quality of life the same, better, or worse?
RN: And what were the results of this study?
MU: We found that severe flares were associated with worse health-related quality of life, mainly in pain, planning, emotional health, and fatigue. However, mild-to-moderate flares did not impact quality of life in any of the domains.
RN: Why do you believe mild and moderate flares did not impact quality of life in the same way that severe flares did?
MU: Probably because of what was included in there. Certain factors are not going to affect the health-related quality of life or cause flare. But, for example, if a patient has renal involvement plus arthritis plus rash, they’re going to feel worse and rate higher. And because of that, we’re probably talking about more than 1 organ involved in severe flares and probably only 1 organ involved in mild or moderate flares and the patient may feel almost the same.
RN: What is the clinical significance of these results for rheumatologists?
Well, I think that we need to work more on health-related quality of life because our patients don’t feel the same as we feel and we need to realize when they feel worse and when they feel better. And in this particular case, I think we should try to prevent severe flares, not only because they are going to impact damage, but also because they are going to impact health-related quality of life. We should also take certain measures to improve health-related quality of life when we see that the patients are having a more severe flare.