A follow-up study of a cohort of patients will be presented at PANLAR 2021 to address these two concepts from a medical point of view but also taking into account the participation and feedback from SLE patients.
EF: Hello everyone and welcome to a new Global Rheumatology video blog, where we will be conducting a series of interviews on the oral presentations that will be presented at the PANLAR Congress 2021. We are with Dr. Manuel Ugarte. Welcome, Doctor.
MU: Thank you very much for the invitation
EF: Doctor, tell us, what is your presentation at PANLAR 2021 about?
MU: This time we will present the data from the cohort we have here, and what we are going to analyze is the impact of remission and low activity on the outcomes reported by lupus patients. What is the idea here? Remission and low activity as a concept have been addressed from the medical point of view, that is, it is an exclusively medical definition, in the doctor’s opinion, the patient is well controlled and receiving safe medications, but it does not consider the patient’s opinion, and there are a number of explanations why it was not included.
What we want to know is whether what we call remission or low activity, is associated with the patient really feeling better, so we looked for some indexes that were already validated, such as the Lupus Foundation Index of activity measured by the patient, which is to measure fatigue and the labor productivity index to see how these states impact on labor productivity.
Basically, what we found is that both remission and low activity were associated with a better perception on the part of the patient, that is, the patients felt they had less disease activity, they reported less fatigue. In terms of labor productivity, remission was associated to a better labor productivity, there is low activity, there was no succession.
EF: For how long was this measurement and monitoring done?
MU: The cohort has today eight, nine years. But this analysis is from the visits made between 2019 and 2020, because there was an interference brought about by the pandemic.
EF: About that, how did you manage the disruption during the pandemic?
MU: Well, during the disruption, since the patients already knew these indexes, we were able to continue recording the outcomes reported by them. For example, with the Lupus Foundation Index, we had already proven that this index correlates well with the doctor’s perception, so we have been able to follow the patients based on what they reported and on some lab data, especially during the first year of the pandemic where, in Lima, almost everything was being done remotely, so we had to trust our patients and, fortunately for us, since they already knew the instruments it was much easier to know that we were talking about the same thing. For example, if we asked them about joint pain, they already could differentiate the types of pain or swelling and were able to identify whether it was the joint or they were retaining fluid.
EF: And what is next after this research? Do you plan to do another study with this cohort?
MU: Yes. In fact, with one of these Lupus Foundation Indexes we have received funding from PANLAR to look at the impact on damage, which ideally should have been done between 2020 and 2021, but because of the pandemic it had to be reschedule to 2022. We have already restarted it, so, if all goes well, we should finish it by then.
EF: Lastly, doctor, would you like to invite those who are seeing us in this interview to attend the sessions and get to know more about this research as well as about the others that will be presented? Even to all the symposiums within the scientific program
MU: PANLAR is one of the largest congresses in the world and has the advantage for us who speak Spanish, that is the largest Spanish-speaking congress in the world.
I have had a chance to review the program, which is very good, is very diverse, there are high level presentations on a number of topics. So, I think for most of us, we should all be sitting there watching the sessions. I also have had a chance to review some of the abstracts, that are already online, and there are very interesting works, very interesting talks to attend to. So, I really hope to meet many of you out there.
EF: Doctor, thank you very much for this space to tell us about your presentation at PANLAR 2021.
MU: Thank you and see you soon.