SURVEY: Autoimmune Patients Lack Clear Information on COVID-19 Risks, Vaccination
85% Say Mixed Messages Make Vaccination Decisions Difficult
LONDON, March 16, 2022 /PRNewswire/ -- A survey report released today by the nonprofit European Alliance for Patient Access reveals that, two years into the pandemic, autoimmune patients still don't have the necessary information to make informed decisions about COVID-19 vaccination. The online survey captured responses from 400 people living in Germany, France, U.K., Italy and Spain who have an autoimmune condition such as rheumatoid arthritis, lupus, multiple sclerosis, systemic sclerosis, pemphigus or Graves' disease.
Some medications for autoimmune diseases suppress the immune system, leaving patients with a higher risk of developing severe COVID-19 or breakthrough cases. Survey questions about COVID-19, risk awareness and vaccination revealed that autoimmune patients need health information tailored to their specific condition and the medication they take to manage it.
Key Findings
Patients reported confusion on various vaccination topics, and their responses identified a clear need for customized information.
COVID-19 Exposure and Risks
While 81% of patients said they knew someone who contracted COVID-19, they did not necessarily recognize the full extent of their own vulnerability.
- Only 37% were very aware that, by taking medications that weaken their immune system, they may not be fully protected from COVID-19 even if they are fully vaccinated.
- Only 28% were very aware that immunocompromised people who contract COVID-19 are more likely to transmit the virus to household contacts.
Vaccine Concerns
While the majority of patients reported being fully vaccinated, the 16% of patients who were partially vaccinated or unvaccinated expressed several major concerns:
- Concerns about side effects or safety of the vaccines
- Concerns about triggering a flare-up of their autoimmune disease
- Concerns about potentially having to suspend autoimmune disease treatment to get the full benefit of the vaccine
Vaccine Confusion
Patients' responses revealed particular confusion about vaccine brands, boosters and third doses.
- 41% are uncertain about whether they need a third vaccine dose or when to get it.
- 59% are uncertain about the difference between a third dose and a booster.
- 58% don't understand if a booster is needed after a third dose.
- 48% don't understand if a third vaccine dose needs to be the same brand.
Across the board, patients reported that the information they were receiving about COVID-19 vaccinations was often confusing.
- 85% said mixed or unclear messages from the media and government complicate decisions about vaccination.
Needs Assessment
Patient responses highlighted a desire for personalized care.
- 82% want to explore which medications for their condition are most compatible with COVID-19 vaccines.
Many reported wanting policymakers to provide clear, correct and concise information that is centrally located and tailored to individual conditions and medications. They also underscored the importance of working with informed health care providers to navigate life as COVID-19 becomes endemic.
International patient advocacy organizations participated in a virtual roundtable discussion of the survey results. Their insights are highlighted throughout the report.
About the Survey
The survey ran January 12-24, 2022 and collected 400 responses.
The European Alliance for Patient Access is a division of the Global Alliance for Patient Access, an international platform for health care providers and patient advocates to inform policy dialogue about patient-centered care.
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