Understanding Vaccination Rates and Attitudes Among Patients With Rheumatoid Arthritis

Patients with rheumatoid arthritis self-report a moderate rate of any previous pneumococcal vaccination (54%) and a very low rate of herpes zoster vaccination (8%).
Published Online: March 17, 2016
Diana S. Sandler, MD; Eric M. Ruderman, MD; Tiffany Brown, MPH; Ji Young Lee, MS; Amanda Mixon, PA; David T. Liss, PhD; and David W. Baker, MD, MPH


Objectives: Appropriate vaccinations are important for patients with rheumatoid arthritis (RA), who are often treated with highly immunosuppressive therapies that increase their risk of infection. However, rates of vaccination among patients with RA are below optimal levels.

Study Design: We conducted a patient survey to assess self-reported vaccination status and to compare that status with electronic health record (EHR) data.

Methods: We recruited randomly selected patients with RA in an academic practice in 2013. Eligible participants had a diagnosis of RA, at least 1 visit to a rheumatology clinic in each of the previous 2 years, were 18 years or older, and had English listed as their preferred language. The survey included the following domains: a) patient self-reported receipt of influenza, pneumococcal (PNVX), and herpes zoster (HZVX) vaccinations; b) attitudes about these vaccines, including reasons for unvaccinated status, if applicable; and c) provider recommendations about these vaccines.

Results: Based on participants’ self-report, we found a high vaccination rate for influenza during the previous season (79.4%), a moderate rate of any previous vaccination for pneumococcus (53.9%), and a very low rate of any previous vaccination for herpes zoster (7.8%). If we assume that all self-reports are accurate and we include vaccinations recorded in the EHR that were not reported by patients, the vaccination rates were approximately 8% to 9% higher for PNVX and HZVX.

Conclusions: Vaccination rates are low among patients with RA based on self-report data. Further research is needed to investigate system-level barriers to vaccination and the impact of evidence-based, provider-level interventions on vaccination rates.

Am J Manag Care. 2016;22(3):161-167

Take-Away Points
Vaccination rates are low among patients with rheumatoid arthritis based on self-report data. 
  • Lack of physician recommendation, as recalled by the patient, appears to be the most important factor for unvaccinated status. Only three-fourths of patients said their doctors had discussed their increased risk of infection, and only two-thirds said their doctors discussed the importance of vaccinations. 
  • Patient lack of knowledge or negative attitudes toward vaccinations appear to be less important contributors to suboptimal vaccination rates. 
  • Further research is needed to investigate system-level barriers to vaccination and the impact of evidence-based provider-level interventions on vaccination rates.
Patients with autoimmune rheumatic diseases have a risk of infection approximately double that of age- and gender-matched controls.1 Patients with rheumatoid arthritis (RA) are at an increased risk for infection due both to inherent dysregulation of the immune system and, for many, the added effect of chronic immunosuppressive therapy. For example, the adjusted hazard ratio for contracting herpes zoster in patients with RA is 1.9 compared with healthy controls.2,3

Because of their increased risk of infection, the Advisory Committee on Immunization Practices (ACIP) recommends that immunocompromised adults receive an annual influenza vaccination (INFVX), as well as the pneumococcal vaccination (PNVX) with the 13-strain pneumococcal conjugated vaccine (PCV-13) followed by the 23-strain pneumococcal polysaccharide vaccine (PPSV-23).4,5 The recommendations are more complex for herpes zoster vaccination (HZVX), which uses a live virus and has historically been considered contraindicated in patients who are severely immunosuppressed. Currently, ACIP recommends HZVX for all individuals 60 years or older.6 However, a recent study found that HZVX had even higher efficacy (ie, 70% risk reduction) among healthy adults aged 50 to 59 years7; HZVX (Zostavax) has FDA approval for use in adults 50 years or older.8 ACIP states that HZVX is safe for patients who are taking less than 20 mg/day of prednisone and/or low doses of methotrexate (≤0.4 mg/kg/week), azathioprine (≤3.0 mg/kg/day) or 6-mercaptopurine (≤1.5 mg/kg/day).6 If a physician plans to initiate a strong immunosuppressant, ACIP recommends the patient be given the HZVX at least 14 days prior to starting the medication.6 This recommendation has been challenged by findings from a recent analysis of Medicare patients with immune-mediated disease who were given HZVX. There was no increase in herpes zoster infections during the 42 days after HZVX, even among patients receiving biologic immunosuppression, whereas those vaccinated had a lower incidence of zoster over a median 2-year follow-up.9

Vaccination rates remain low among RA patients, despite their high risk of infection, strong evidence of vaccine safety and efficacy, and recommendations from national organizations. A recent large study found that only 25% of RA patients were adherent to current vaccine recommendations.10 Studies have shown adherence rates among RA patients ranging from 10% to 34% for INFVX,10-13 17% to 54% for PNVX,12,14,15 and 1% to 21% for HZVX.16,17 The reasons for these low vaccination rates are not entirely clear.18

At our institution, the Northwestern Memorial Medical Center in Chicago, vaccination rates for patients with RA measured using electronic health record (EHR) data have been similar to national data. However, EHR vaccination data may be incomplete because many patients receive vaccinations outside of their rheumatologist’s office and their primary care clinician may practice in a different health system. The completeness of EHR data on vaccinations is also limited, as many patients may get vaccinated in pharmacies and retail stores with no automated way to transfer documentation to their healthcare team.19 Therefore, at the start of a quality improvement research project to improve vaccination rates, we conducted a telephone survey to capture patients’ self-report of vaccination status and to better understand vaccination behavior and attitudes of patients with RA.

Setting and Participants

This study was conducted at an academic rheumatology clinic from July through September 2013 and was approved by the Northwestern University Institutional Review Board. Structured query language was used to identify all eligible patients from EHR data. Patients were eligible if they had a diagnosis of RA (International Classification of Diseases, Ninth Revision, Clinical Modification codes 714.0-714.9) in the problem list, at least 1 visit to the study clinic in each of the previous 2 years, English listed as their preferred language, and were aged at least 18 years. A total of 1119 patients were identified as eligible based on EHR data. Query output included patient contact information for recruitment. A random number was generated for each patient on the list, and the list was sorted by this number to ensure that a random sample of patients would be recruited.

Our goal was to complete 100 interviews. Assuming a 50% participation rate based on previous work with a similar patient population, we initially selected the first 200 patients for recruitment. Manual chart reviews were done prior to recruitment to confirm that the patients had a diagnosis of RA. After initial chart reviews found that some patients did not have a confirmed diagnosis of RA, we selected an additional 50 patients for possible recruitment. We stopped chart reviews and recruitment of new subjects once we reached 100 completed interviews. Of the 245 manual charts we reviewed, 48 did not have an RA diagnosis, resulting in 197 patients whom we attempted to recruit.


A study interviewer called potential respondents up to 6 times and invited them to participate in a 10-minute structured telephone interview. We varied the time of day for the calls to maximize the chance of contact and to decrease selection bias. A message was left on identified voicemails on the second and fifth attempts asking patients to return the call if they were interested in participating in the study. Patients were offered a $10 gift card for completing the survey.

Survey Instrument

The survey included published items from the Behavioral Risk Factor Surveillance System survey20 and items developed for this project by the study team. The survey had 22 to 27 items (depending on skip patterns) and addressed the following content areas: a) self-reported receipt of INFVX, PNVX, and HZVX; b) attitudes about these vaccines, including reasons for being unvaccinated, if applicable; and c) provider recommendations about these vaccines. Additionally, if participants reported receipt of a vaccination, we asked for details on the type of setting/place they had received each vaccine. If a participant reported ever receiving an influenza vaccination, we asked if they had been vaccinated during the previous year’s flu season (2012-2013). As HZVX is contraindicated for some immunosuppressed patients, we included an item inquiring whether a provider had ever recommended against receipt of this vaccine. Participants responded to several items regarding attitudes toward vaccinations on a 4-point Likert scale. Open-ended questions were asked to elicit participants’ reasons for not being vaccinated. Interviewers coded responses to open-ended items about reasons for not being vaccinated into the following predefined categories if appropriate: a) no one ever recommended vaccine, b) did not think they needed vaccine, and c) do not like vaccinations/do not think safe. Responses that could not be coded into the above categories were reviewed by 2 authors (DB and DS) and an additional category—d) MD/pharmacist recommended against vaccination—was added. If more than 1 reason was mentioned, multiple responses were recorded. Demographic items were asked at the conclusion of the survey.

Chart Review

We reviewed EHRs of consented participants who completed the telephone interview to identify whether they were receiving an immunosuppressive drug for treatment of RA, the presence of comorbid conditions, and documented immunizations (administered in the clinic and/or historical vaccinations). We classified patients as receiving immunosuppressive medications if the current medication list included any biologic agents, corticosteroids, methotrexate, leflunomide, or azathioprine; hydroxychloroquine and sulfasalazine were not considered immunosuppressive agents. Comorbid conditions were identified from the participants’ problem list and included cancer, chronic pulmonary disease, coronary artery disease, chronic heart failure, peripheral vascular disease, severe chronic liver disease, diabetes with end organ damage, renal failure, and dementia.


The survey response rate was calculated using guidelines from the American Association for Public Opinion Research.21 Survey responses were summarized using descriptive statistics. We calculated kappa statistics to analyze the agreement between self-reported vaccination and vaccination documentation in EHR data; for these analyses, if a respondent said he or she did not know whether they had been vaccinated, this was categorized as a “no” response.

Of the 197 patients we attempted to recruit, 13 had no valid telephone number, 19 refused participation, 63 were not reached after 6 attempts, and 102 patients enrolled in the study and completed the interview (55.4% response rate). Most participants were female (85.3%) and the mean age was 57.8 years (Table 1). A total of 91.2% of participants were prescribed immunosuppressive therapy based on chart review; 85.2% of participants reported they were taking immunosuppressive therapy.

Vaccination Status

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