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Although patients with autoimmune diseases are more likely to develop severe vaccine-preventable infections, vaccine uptake remains relatively low in this patient population.
A multidisciplinary steering committee identified ways in which to decrease vaccine hesitancy, while improving vaccine uptake, in adult patients living with rheumatic diseases. Shilpa Venkatachalam, PhD, MPH, highlights the results of the upcoming ACR Convergence 2022 presentation, “Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions,” including the critical topics that were identified, such as vaccination efficacy and safety, and how rheumatologists can increase vaccine uptake in this patient population. Venkatachalam is Associate Director of Patient-Centered Research at Global Healthy Living Foundation, CreakyJoints.
Shilpa Venkatachalam, PhD, MPH: I do want to stress that we wanted to be very rigorous in how we were arriving at this list of priority topics because one thing we do know is that the decision to vaccinate is not a one-person decision. It involves a multifaceted process. It's the result of a complex series of decision-making attitudes and actions that involve patients, providers, policymakers, regulators, and health communication specialists. And each stakeholder has, obviously, different priorities. Even though it was very challenging, we wanted to bring together a multi-stakeholder group and, most importantly, arrive at a consensus despite varying priorities that different stakeholder groups might have so that we could all agree upon what topics are deemed important for future patient-centered research.
Rheumatology Network: Were you able to arrive at that consensus?
SV: We were indeed. Through the Delphi process, there were 33 research topics that we identified and 13 of those topics were rated as critical by over 70% of all the stakeholders. What we found was that 2 of the highest ranked critical topics were around safety and efficacy. For example, how well the vaccine works for adults with autoimmune conditions and how beliefs about vaccine safety affect vaccine uptake.
This is very important, specifically for the community of patients we serve, the autoimmune community, because these are patients who have an underlying chronic condition that often puts them at risk for infections for specific infections. Many are on immunomodulating therapies, so there can be a level of immune suppression, so the risk of contracting infections is elevated. But we also know, for example, that patients have concerns about vaccine efficacy and safety if they are immune suppressed and if the vaccine will cause a flare.
RN: What is the clinical significance of these results?
SV: Our main goal was to get the patient perspective and to get the patient input as we decide what the future agenda for research looks like in this area, so that we can help patients to make informed decisions and can increase vaccine confidence, reduce vaccine hesitancy, and thereby increase uptake of vaccines within this population. This project was not just for COVID-19, although at the time we were surrounded by the COVID-19 vaccine. A lot of concerns were about the COVID-19 vaccines, but we were looking at 4 or 5 different vaccine preventable infections, such as pneumococcal pneumonia, influenza, herpes zoster, and HPV.
RN: Is there anything else that you'd like our audience to know?
SV: As we've discussed, adults living with these conditions have very specific concerns that the stakeholders need to address. Secondly, a lot of concerns also relate to a lack of guidance and consensus around things like timing and scheduling of vaccination, adjustment of immunomodulatory therapies, and overall trust in the healthcare system. Patient advocacy organizations like ours are uniquely situated to conduct patient-centered outcomes research because we're in direct contact with the patient community. But we're also in a very unique position to disseminate evidence to patient communities to raise awareness.
One of the things I think that is really important that emerged consistently through discussions is that vaccine advisory committees dealing with vaccine-related communications should be encouraged to include representatives from patient advocacy organizations to better understand the concerns of those living with these conditions and as guidelines are developed and shaped to be able to distribute tailored messaging to increase confidence in vaccines among patients with these conditions.
RN: Patient-reported outcomes are so incredibly informative and useful for both patients and clinicians alike.
SV: Absolutely. It’s important to state that COVID-19 brought to focus disparities in health care. And so, we did talk about that and there was rigorous discussion around health disparities and how communication needs to be tailored in order to reach underrepresented populations and marginalized communities.