In two new studies presented at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, a team of researchers hone in on two important topics: vaccine hesitancy in autoimmune patients and priority research topics for vaccine uptake in this group.
We spoke to a few of the researchers from the Global Healthy Living Foundation for their key takeaways from these studies — and what they mean for you.
COVID-19 Vaccine Uptake and Reasons for Hesitancy in Rheumatology Patients
- Most rheumatology patients who have not been vaccinated against COVID-19 cite not enough long-term safety data — or that they’re planning to wait and see if it’s safe — as reasons for not getting the jab.
- For those who have been vaccinated but have not received boosters, the most common reason cited was that they had not been told by their doctor to get an additional dose.
- Keeping an open line of communication with your doctor about your questions and concerns, while checking your sources of information for credibility, is key to understanding the benefits and risks of vaccines.
Many rheumatologists and other providers are concerned about sub-optimal COVID-19 vaccine uptake by patients with autoimmune conditions. That’s understandable, given adults living with autoimmune disease have nearly twice the risk of vaccine-preventable infections compared to the general population.
Because of that, researchers wanted to better understand which patients are receiving vaccines and why some are not. To do so, they surveyed a large sample of patients from a network of 101 rheumatology practices in a new study. A tablet-based, electronic survey was used to collect answers from 86,540 patients between September 2021 and June 2022.
Patients were asked to provide:
- COVID-19 vaccine status for both the primary vaccine series and vaccine booster
- A time estimate on when they planned to start or complete their vaccination series
- Reasons why they might not receive their COVID-19 vaccine or booster
Of the patients surveyed, 76 percent reported that they had been fully vaccinated with the primary series (meaning they either received two COVID-19 shots or the one-dose Johnson & Johnson vaccine). Seventy percent of fully vaccinated patients said they had received the booster.
Another 2 percent reported being partially vaccinated (meaning they still had a shot remaining in their primary series) and 6 percent said they had not received their first vaccine yet, but planned to. The remaining 16 percent of patients noted that they did not intend to get a COVID-19 vaccination at this time.
Reasons for this varied, but most patients cited concerns about vaccine safety or side effects. The patients who didn’t plan to receive the primary vaccine series provided for COVID-19 vaccine hesitancy gave these responses:
- Not enough long-term safety data/plan to wait and see if it’s safe: 34%
- Concerned about side effects: 24.8%
- Concerned the vaccine will cause a flare of health condition: 13.6%
- The vaccine could give me COVID-19 infection: 10.1%
- I don’t believe I need a vaccine or another dose: 7.2%
- I don’t trust COVID-19 vaccines: 6.8%
- The vaccine may not be effective for people like me: 2.6%
- I am concerned that the COVID-19 vaccine could modify my DNA: 0.4%
- I am concerned that the COVID-19 vaccine might affect me being able to have healthy children: 0.4%
“Because patients, including me, are so scared about going into a flare, providers need to anticipate patient fears and provide possible solutions to them in advance,” says study author Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight, at the Global Healthy Living Foundation, who has inflammatory arthritis. “Tell the patient, for example, ‘If you do go into a flare, here is our plan of action.’”
To address the effectiveness and safety of the vaccine, providers sometimes tell patients we don’t have enough data quite yet — and this transparency is important. But they may also be able to encourage patients to understand how the vaccine took years of research and development, which could surprise some hesitant patients.
“They can talk about how the vaccines went through a rigorous safety screening process and how it took over 10 years to research this [mRNA] technology,” says Dr. Venkatachalam. “How we communicate risk to patients is really important.”
For instance, before the COVID-19 pandemic, an mRNA flu vaccine was already in clinical trials, per Penn Medicine.
Providers can also remind patients to get their COVID-19 vaccine booster. Among study participants who cited hesitancy in receiving the booster, concerns about safety (21 percent) and side effects (15 percent) were still noted, but the biggest reason cited was that they had not been told by their doctor to get an additional dose (33 percent).
What This Means for You
If you’re concerned about the safety or effectiveness of the vaccine, go to your doctor with a list of your specific questions and concerns. Diseases act differently in every patient, so conversations about benefits and risks need to revolve around your specific situation (how active your disease is right now, if you’re experiencing a flare, etc.), adds Dr. Venkatachalam.
You might find comfort in speaking with other people living with autoimmune diseases who have gotten vaccinated — and ensure you’re avoiding misinformation online by going to credible sources to get facts, like the U.S. Centers for Disease Control and Prevention or the World Health Organization. If someone tells you something about a vaccine that sounds troubling, be sure to ask for their source.
And finally, even if your doctor hasn’t recommended a COVID-19 booster, ask about it. Most people with an autoimmune disease would benefit from the extra layer of protection a booster provides.
Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions
- Patients, patient advocates, clinicians, researchers, policy makers, regulators, and vaccine manufacturers rank how well a vaccine works for adults with autoimmune conditions as a top research priority.
- Patients and patient advocates also prioritize research around how myths or misinformation about vaccines affect vaccine uptake.
- Topics prioritized by key stakeholders can inform future research efforts to decrease vaccine hesitancy and improve the uptake of relevant vaccines for adults with autoimmune conditions.
Adults living with autoimmune disease are a high-priority vaccination group, which is why Global Healthy Living Foundation researchers wanted to prioritize topics for future patient-centered research in a new study that will be presented at ACR.
The ultimate goal: to reduce vaccine hesitancy and increase the uptake of vaccines for conditions like pneumococcal pneumonia, influenza, zoster, human papillomavirus, and SARS-CoV-2 (the virus that causes COVID-19) among adults with autoimmune conditions.
Researchers brought together a steering committee of a dozen clinicians and patients representing rheumatic diseases (psoriatic arthritis, rheumatoid arthritis, and vasculitis), inflammatory bowel disease, and multiple sclerosis. The members identified 33 vaccine uptake and hesitancy research topics through a literature review and iterative discussions.
“Part of what we talked about in iterative discussions is that there are individual-level concerns and there are system-level concerns,” says study author Ben Nowell, PhD, Director, Patient-Centered Research, at the Global Healthy Living Foundation. “We tried to make sure we were casting a wide enough net to represent most of the types of research questions or concerns in this area.”
Next, a larger group of 34 stakeholders. including patients and patient advocates; clinicians and researchers; and policy makers, regulators, and vaccine manufacturers. rated each topic on a nine-point scale in two separate rounds. The first round included 33 topics and the second round included 34 topics, after one of the raters proposed an additional topic.
Overall, six topics were rated as critical by more than 90 percent of stakeholders:
- How well a vaccine works for adults with autoimmune conditions
- How beliefs about vaccine safety affect vaccine uptake
- How myths or misinformation about vaccines affect vaccine uptake
- How trust in the health care system/provide affects the uptake of vaccines
- How barriers to health care access affects vaccine uptake
- How vaccine safety profile affects vaccine uptake
In particular, the group of patients and patient advocates unanimously rated three topics as critical:
- How myths or misinformation about vaccines affect vaccine uptake
- How source of information about vaccines affects vaccine uptake
- How perceived transparency of information about vaccines affect vaccine uptake
“Patient and patient advocacy group are aware of what patients are hearing about vaccines and how those myths and misinformation affect whether they ch0se to get a recommended adult vaccine,” says Dr. Nowell.
These topics can inform future research efforts to decrease vaccine hesitancy and improve the uptake of relevant vaccines for adults with autoimmune conditions.
“It’s valuable to make sure the patient perspective is reflected in the peer-reviewed literature,” says Dr. Nowell, “especially at a conference like ACR where there are thousands of providers and researchers from around the world.”
What This Means for You
Talk to your doctor if you have questions about myths or misinformation regarding vaccines, transparency of information about vaccines, or any other topic that’s keeping you from getting vaccinated. Remember, if you’re living with an autoimmune disease, you’re in a high-risk group for vaccine-preventable infections.
Plus, you’re not the only one with questions: These topics are top priorities that other patients and patient advocates want to address, too. (Read our latest resources on COVID vaccine news and information here.) Researchers are hopeful that future studies will take these concerns into account and eventually provide solutions to reduce vaccine hesitancy and increase the uptake of vaccines in this high-risk group.
Get Free Coronavirus Support for Chronic Illness Patients
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.
Mudano A, et al. COVID-19 Vaccine Uptake and Reasons for Hesitancy in a Large Rheumatology Practice Network [Abstract]. American College of Rheumatology. Accessed October 19, 2022. https://acrabstracts.org/abstract/covid-19-vaccine-uptake-and-reasons-for-hesitancy-in-a-large-rheumatology-practice-network/.
Interview with study author Ben Nowell, PhD, MSW, Director, Patient-Centered Research, at the Global Healthy Living Foundation.
Interview with study author Shilpa Venkatachalam, PhD, Director, Patient-Centered Research Operations and Ethical Oversight, at the Global Healthy Living Foundation.
Venkatachalam S, et al. Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions [Abstract]. American College of Rheumatology. Accessed October 20, 2022. https://acrabstracts.org/abstract/priority-research-topics-for-vaccine-uptake-among-adults-with-autoimmune-conditions/.
World-Changing mRNA Vaccines From Penn Medicine. Penn Medicine. Accessed October 20, 2022. https://www.pennmedicine.org/mrna.