Shot in the Arm: Talking to Vaccine-hesitant Patients About Protecting Themselves
As far as hot-button health care topics go, it is hard to top vaccines.
Even dropped into a casual conversation, the idea itself — and this includes the slang term for opponents of vaccination — can cause tension and divisiveness.
It follows, then, that talking to vaccine-hesitant patients about the topic can present significant challenges for rheumatologists. However, the conversation is necessary, and must take place at every visit, if possible. Healio Rheumatology offers a playbook for physicians to follow, a script to help guide what can occasionally be a tense or tumultuous dialogue.
Step one: start early.
“I try to tackle the issue head on and bring up vaccines as soon as possible, ideally in the first visit with a new patient,” Christopher Mecoli, MD, assistant professor of medicine, director of research operations and physician lead for the Myositis Precision Center of Excellence at Johns Hopkins University, said in an interview.
The talk needs to happen immediately because patients with rheumatic diseases are susceptible to many infections — a concern that is often exacerbated by immunosuppressive therapy — and therefore require a long list of immunizations: influenza, pneumococcus, a tetanus booster every 10 years, hepatitis A, shingles, meningococcus and HPV. This is a lot of vaccines for anyone, much less a patient with a painful chronic condition.
Beyond the sheer volume of needles, the next major hurdle is the prevalence of information and misinformation available to today’s patient. A cursory web search about these vaccinations could yield anything from sensible peer-reviewed studies showing risks and benefits, to debunked data linking vaccines to autism or other developmental disorders, to crackpot theories that the government and big pharma are in cahoots on a grand plan to make everyone sick. It is up to the physician to set the record straight.
“In patients who express uncertainty or reluctance, I try to understand their concerns, to see what their barriers are, and tune in to what kind of data or narrative will help them come around to the idea of getting vaccinated,” Mecoli said.
Some vaccine-hesitant patients may be swayed by big data, studies with thousands of patients conducted in multiple countries showing what every doctor and most patients know: that vaccines are safe and effective. Others are more likely to be convinced by personal anecdotes of patients or family members of patients who were protected from harm by getting their vaccines. Mecoli said he often employs a combination of both. “Whatever it takes to get that wall to come down,” he said.
It is important to understand that not everyone who opts out of vaccination, or who chooses not to vaccinate their child, is an anti-vaccine advocate, according to Cathy Patty-Resk, MSN, RN-BC, CPNP-BC, a pediatric nurse practitioner at Children’s Hospital of Michigan. “For many parents, it is just another parenting belief and they are counting on herd immunity to protect their children,” she said.
In fact, Patty-Resk suggested that most patients who are vaccine-hesitant are simply people who have heard a few negative reports in the mainstream media and need more information. With that in mind, the more information rheumatologists have, the more answers they will have at the ready for this dialogue, and the more likely they will be to convince patients to protect themselves, their families and the community at large.
Explaining Real Risks
For Paul A. Offit, MD, director of the Vaccine Education Center and an attending physician in the division of infectious diseases at Children’s Hospital of Philadelphia, it is important to separate fact from fiction when it comes to risks associated with vaccination. “We need to tell our patients that, as with any medical or preventive therapy, in addition to the many benefits, there are risks associated with vaccines,” he said. “If they did not have any possible negative effects, then they probably would not have any positive effects, either.”
Ultimately, separating the true risks from the false risks can accomplish two goals: it can validate the concerns that patients may have, but, simultaneously, assuage those concerns by helping them understand that the actual risks they undertake in getting vaccinated are usually mild and transient.
For example, injection site pain can occur, along with fevers, chills and headaches, or sluggishness and achy joints. Offit noted that letting patients know that most of this will go away in a day or two is an important message.
“Now, can vaccines also cause serious side effects?” Offit said. “Yes, of course. We should tell our patients about those events, as well, and address their concerns head on.”
For example, the influenza vaccine, in extremely rare cases, can cause Guillain-Barré syndrome. In even more rare cases, it has caused narcolepsy, but never in the U.S., according to Offit.
Also in the rare-but-serious category are allergies to vaccines — usually the allergy is to the gelatin, which is added to some vaccines as a type of preservative — which Offit suggested can occur in one in 1.4 million doses. “The measles vaccine can also cause thrombocytopenia, but even this comes with no permanent harm,” Offit said.
Possibly the most notable serious adverse effect came from the oral polio vaccine, which caused paralysis in approximately 1 per 2.4 million doses. “People raised an argument against this vaccine based on these events, and so we moved away from the oral vaccine to an inactivated vaccine,” Offit said. “We did not need to use that vaccine because we had a better one.”
The issue, for Offit, is that many of the people who strongly oppose vaccines never address these real risks. “They mention autism, developmental disorders, chronic fatigue syndrome, ADHD,” he said. “None of this is true, of course.”
Once the risks have been explained, the next best thing a rheumatologist can do is prepare for the questions they are likely to face about the vaccines.
Understanding the Concerns
“It has been my experience that the influenza, pneumococcus and zoster vaccines are the ones generating the most discussion,” Natalie Azar, MD, a rheumatologist at the New York University Langone School of Medicine, said in an interview.
Significant time and effort has gone into understanding why patients fail to get these vaccinations. For example, in their recent study in Vaccines, Jacques and colleagues aimed to explain low influenza and pneumococcal vaccine rates among patients with Sjögren’s Syndrome. The main explanations for failing to get vaccinated were fear of adverse effects from the influenza vaccine, which was reported in 40.3%, and a lack of proposal for the pneumococcal vaccine, which 72.3% of patients reported. Conversely, among patients who were vaccinated, general practitioners proposed the influenza vaccine in 42.6% and rheumatologists proposed the pneumococcal vaccine in 41.2%.
Rheumatologists, then, may need to do a better job of proposing these vaccinations to their patients. But this is not the only reason patients fail to get their vaccines. A close look at the influenza vaccine highlights many of the issues at hand.
“Year after year, my patients seem to be most suspicious of the flu vaccine, for a number of reasons,” Azar said. Some patients claim that since they have never gotten influenza, they never will, and do not need to be vaccinated, she noted. Others believe that the vaccine will actually make them sick; still others question the logic of taking something that is far from 100% effective.
“This is when I try to educate about the value of vaccinating,” Azar added. “That is, if you do get the flu but have had the vaccine, you are less likely to get severe disease or end up with a serious complication like pneumonia.”
“When patients tell me that they have heard that the flu vaccine does not work that well, sometimes they have a fair point, and I agree with them,” Kevin L. Winthrop, MD, of Oregon Health Sciences University, told Healio Rheumatology. “Because of this, it can be difficult to convince people to get their shot.”
The solution is twofold for Winthrop. “One thing we need is better vaccines,” he said. “The other thing we need are studies to show how well they work.”
As the research and development communities attempt to solve these problems, rheumatologists are left to manage concerns as best they can. To be fair, some challenges are less significant than others.
To that point, Azar suggested that the pneumococcus vaccine does not receive the kind of negative media attention that influenza does. “Because of this, it usually does not take much convincing to get them to receive the pneumococcus vaccine,” she said.
Regarding the shingles vaccine, Azar said that because many patients or their family members have had shingles, they know how unpleasant it can be. “This makes it easier to get them to have this vaccination,” Azar said.
However, in Mecoli’s experience, word of mouth through online patient forums can build up an undercurrent of fear of the shingles vaccine itself. “I try to be transparent with patients and tell them the vaccine can pack a punch,” he said. “The adjuvant component that is included can make patients feel crummy for a day or two.”
Mecoli sees this as an opportunity to educate. “Informing patients on the expected side effects of the vaccine is very important with regards to their willingness to receive future vaccinations. They need to understand that in some cases, yes, the vaccine may make them feel bad. If you don’t tell them, they may think that something is wrong. But if you tell them ahead of time, it does not hit them unexpectedly.”
This leads to Mecoli’s second point. “The other thing I tell patients is that if they feel bad, that means the vaccine is doing its job of eliciting an immune response and protecting them from illness,” he said. “Framing the discussion in this way is crucial.”
From Reminding to Pestering
In a joint interview about framing the conversation with vaccine-hesitant patients, Leonard H. Calabrese, DO, chief medical editor of Healio Rheumatology and director of the RJ Fasenmyer Center for Clinical Immunology at the Cleveland Clinic, and Cassandra Calabrese, DO, of the Cleveland Clinic, repeatedly used words like “respect,” “empathy” and “trust.”
“The interpersonal relationship we build with a patient over months and years is a very powerful tool,” Leonard Calabrese said. “If you use it wisely, and do not bully people, you can then bring some reason to the medical decision-making.”
Cassandra Calabrese added that it may be beneficial to take a page from the books of colleagues in the infectious disease community. “They take time from every visit to talk about vaccines, especially during flu season,” she said. “It is routine. It is not even a question. For our rheumatology patients, who are at increased risk, we need to get to that place, as well.”
One way to make those routines take hold is to continually remind rheumatologists to talk to their patients about getting vaccinated. But even this can have mixed results. In a study published in Journal of Rheumatology, Broderick and colleagues assessed a multimodal intervention for influenza vaccination in a cohort of 228 patients with RA. The intervention included an education session, electronic medical record alerts and weekly emails. Results showed improved uptake (HR = 1.24; P = .038).
In a similar study in Clinical Rheumatology, Gosselin Boucher and colleagues aimed to determine what type of interventions may be used to improve vaccine uptake and acceptance in patients with RA. Results from five articles showed that when providers were reminded to have the conversation with their patients, vaccination rates improved. However, the way those reminders were delivered — educational sessions, emails, best practice alerts — varied greatly. Standardization of reminders in electronic medical records may help providers have the conversation on a more regular basis and in a more uniform way.
Cassandra Calabrese took “reminding” to the next level. “I remind patients that influenza can put you in the hospital, or even kill you,” she said. “They need to remember how severe the flu can be.”
But even reminders do not always work, as noted by recent survey findings published in Clinical Rheumatology. Murray and colleagues surveyed 425 patients with rheumatic diseases about attitudes and information about pneumococcal and influenza vaccines. The researchers simultaneously employed a low-cost, multifaceted intervention aimed at improving uptake of these vaccinations. In short, their intervention failed to move the needle in terms of uptake rates.
For Winthrop, this means that beyond the emails and the interventions, pure persistence is probably the best way to improve uptake on an individual patient basis. “It is not always something that happens right away,” he said. “I have been pestering someone to get a flu vaccine for 5 years, and she finally agreed. I suppose there was enough flu going around, or maybe she was just tired of hearing me bothering her. You need to say something about it every time.”
Data, Anecdote and Bargaining
Once it has been established that “something” needs to be said every time, the next consideration is exactly what to say.
“I will pull data from the CDC showing efficacy, I will pull data showing that the particular vaccine has never caused autism, I will show them studies with 10,000 patients,” Winthrop said. He acknowledged, however, that sometimes the data can be overwhelming or incomprehensible to some patients.
In these cases, anecdotes may be more effective. For Patty-Resk, it can be effective to hit hard, and hit home. “I will say to a parent, ‘Your child could die if they get the flu or any of the other vaccine-preventable diseases,’” she said.
As a scientist, Mecoli understands that anecdotes — in a purely logical sense — should not be as effective or convincing as data. “But they often resonate with patients,” he said. “If a patient hears a story about someone feeling miserable from, say, chronic herpetic neuralgia or eye complications associated with shingles, it makes it easier to educate them on the risk of remaining unvaccinated.”
However, Mecoli is careful not to cross the line into scare tactics. “I try to tell them that I just want to prevent something bad from happening,” he said.
Even the tone of the conversation should be considered, according to Azar. “Even if you strongly disagree with their beliefs, you need to explain the facts to them patiently, and without judgment,” she said.
Cassandra Calabrese suggested that when the family member of a patient is in the room, it offers another opportunity. “If the patient is resistant but their family member is not, or vice versa, I can use one to encourage the other, and, often, both will leave my office convinced to get their shot,” she said.
Most patients are aware that young children and older adults are more vulnerable to influenza and other infections. “I use that knowledge and try to explain that when you get a flu shot, you are not just protecting yourself, but you are protecting your more vulnerable loved ones, as well,” she said. “I capitalize on the fact that patients feel a sense of love and responsibility to those around them.”
For Winthrop, this type of conversation falls under the category of bargaining. “I understand that there are a lot of vaccinations recommended for our patients,” he said. “One approach I take is to say, ‘Hey, let’s do this one now, and in 6 months, we can try another one.’”
Perhaps the hardest aspect of being a health care provider is falling short in negotiating with a patient, and the patient ultimately refuses to get their shots.
“I am not going to let a parent’s beliefs affect my relationship with them or their child, even if it will make my job riskier and more difficult,” Patty-Resk said. “We cannot refuse to treat a patient because of their beliefs.”
“My job is to educate,” Azar added. “If a patient is going to walk out of my office and not get vaccinated, at least they will walk out with as much information as I can possibly give them, and their decision will be an informed one.”
For Leonard Calabrese, the individual doctor-patient conversation is only part of a larger picture. “We are not doing a very good job, as a specialty and as a country, in informing people that vaccines are necessary, and that they are safe and effective,” he said. “The first principle here is that rheumatologists have to be engaged in vaccinology. There has to be a commitment that we are going to be part of this health care team that is going to bring protective vaccines not only to a vulnerable segment of the patient population — and that includes most people with rheumatic diseases — but also to as many people as possible.”
To reach this goal, the rheumatology voice can — and should — be louder. Patty-Resk urged clinicians to support restrictions on social media that spread “horrific lies” about community health issues. “As providers, we should be backing legislative mandates for vaccination of all school children or even all children,” she said.
A number of government and nongovernment organizations, from the American Academy of Pediatrics to Voices For Vaccines, are working for the cause. Mecoli believes that rheumatologists can contribute time and resources to these groups and amplify their message. “I believe that education is a silver bullet, but that it is important that this information is properly vetted and has a broader reach,” he said.
Despite the good work being done by physicians and researchers, there are still significant hurdles to clear, according to Winthrop. “Vaccine resistance reflects a broader trend in our society in which people in important places lie and spread falsehoods,” he said. “You can see it at the top of our government, you can see it on some so-called news channels on TV. There is just so much lying going on in our society. What is happening with vaccines is part and parcel of that.”
Winthrop stressed that it is not just poorly educated people who are vaccine-hesitant. “It makes me sad when college-educated people choose not to get vaccinated, or choose not to vaccinate their kids,” he said. “They are putting themselves or their children above everyone else. This is not something we should be able to choose. This is something for the public good. If you know better — and if you are college-educated, you should know better — and you choose not to vaccinate yourself or your children, that is just lame.” – by Rob Volansky
- Broderick R, et al. J Rheumatol. 2018;doi:10.3899/jrheum.170763.
- Gosselin Boucher V, et al. Clin Rheumatol. 2019;doi: 10.1007/s10067-019-04430-7.
- Jacques M, et al. Vaccines (Basel). 2019;doi:10.3390/vaccines8010003.
- Murray K, et al. Clin Rheumatol. 2019;doi:10.1007/s10067-019-04841-6.
- For more information:
- Natalie Azar, MD, can be reached at 207 E 84th St., New York, NY 10028; email: firstname.lastname@example.org.
- Cassandra Calabrese, DO, can be reached at 9500 Euclid Ave., Desk A50, Cleveland, OH 44195; email: email@example.com.
- Leonard H. Calabrese, DO, can be reached at 9500 Euclid Ave. #A50, Cleveland, OH 44195; email: firstname.lastname@example.org.
- Christopher Mecoli, MD, can be reached at 5200 Eastern Ave., Mason F. Lord Bldg., Suite 4100, Baltimore, MD 21224; email: email@example.com.
- Paul A. Offit, MD, can be reached at 3401 Civic Center Blvd., Philadelphia, PA 19104; email: firstname.lastname@example.org.
- Cathy Patty-Resk, MSN, can be reached at 3950 Beaubien St. Fl. 3, Detroit, MI, 48201; email: email@example.com.
- Kevin L. Winthrop, MD, MPH, can be reached at 3270 SW Pavilion Loop Physicians Pavilion, Suite 320, Portland, OR 97239; email: firstname.lastname@example.org.
Disclosures: Azar, Cassandra Calabrese, Mecoli, Offit and Patty-Resk report no relevant financial disclosures. Leonard Calabrese reports serving as an investigator and a consultant to Horizon Pharmaceuticals. Winthrop reports personal fees from AbbVie, Bristol-Myers Squibb, UCB, Eli Lilly, Galapagos, GlaxoSmithKline, Pfizer, Roche and UCB, as well as grants from Bristol-Myers Squibb.