A Bitter Pill to Swallow: Nonadherence With Prophylactic Antibiotics During the Anthrax Attacks and the Role of Private Physicians

Bradley D. Stein; Terri L. Tanielian; Gery W. Ryan; Hilary J. Rhodes; Shalanda D. Young; Janice C. Blanchard

Disclosures

Biosecur Bioterror. 2004;2(3) 

In This Article

Results

Thirty-nine participants were from BPF and 15 were from the HSOB. Brentwood postal workers were primarily African-American, slightly older, had less formal education, and were more likely to be female than HSOB participants ( Table 1 ). As a result of our sampling strategy, rates of adherence were comparable across groups. Twenty-eight participants (52%) completed the full course of recommended antibiotics; 26 participants (48%) did not. Seventeen of 30 women (57%), but only 11 of 24 men (46%), adhered to the recommended course. There were no other significant sociodemographic differences in rates of adherence.

Patterns of nonadherence with medication were complex, varied, and comparable between groups ( Table 1 ), with participants deviating from the recommended duration of medication (e.g., started late or stopped early) as well as from the recommended dosage (e.g., reduced dosage or took the antibiotics intermittently). Only one person did not start antibiotics.

One theme that emerged from discussion of the anthrax attacks and decisions about antibiotics was how the public health system, the U.S. Postal Service, and the Capitol's attending physician's office responded to the crisis. Initially, almost all participants had a positive or neutral opinion of public health officials and relied on them for information and guidance: One female postal worker expressed the common theme that "they [public health officials] are [here] trying to protect us." But as events unfolded, participants reported viewing the response as confused and disorganized ( Table 2 ). Some were uncertain about who was responsible for providing information and advice; some believed that uniformed public health staff were military personnel; and they often referred to the Centers for Disease Control and Prevention and the District of Columbia Department of Health personnel as a collective "them." Many participants were concerned about agencies' levels of expertise/ experience and thought much of the information was poor or inaccurate. As one female employee at the HSOB said, "This 'circus of specialists' came through and said that they had 'seen hundreds of cases of anthrax, and everything would be fine.' Hundreds of cases of anthrax? Where? In goats? It wasn't helpful or trustworthy when people were clearly bluffing." As a consequence, participants' trust in federal and local public health officials eroded, and several participants suggested that their health might not have been the primary concern of public health officials. One male employee at the HSOB represented the view of several of his colleagues when he described the response as being primarily "CYA for the Attending Physician's office and the CDC. . . . If anybody did contract and die from anthrax it would have been a huge embarrassment for the Attending Physician's office and the CDC." In contrast, Brentwood postal workers who held the view that their health was not the primary motivation of public health officials were more likely to believe that " . . . [public health officials'] main concern was wanting to experiment, not helping the employees."

For HSOB participants, the erosion of trust was partially compensated for by the response of the Capitol's attending physician's office, which quickly took over the medical care of the HSOB staff by organizing the flow of information about anthrax and advocating for better information for HSOB staff.[14] As described by one female employee at the HSOB, "I felt like somebody was working on this for us. . . . You [could] tell he was working 24 hours a day on this for us. It made me feel I could relax because somebody else was worrying."

In contrast, Brentwood postal workers seldom mentioned any advocate, more commonly talking about relying on coworkers and the media for information about what to do. Many Brentwood postal workers also highlighted differences in the official response between BPF and the HSOB as examples of disparate treatment. A number expressed feelings similar to this female employee at the BPF, who described feeling neglected and upset that "they closed the Senate office building and didn't close us down. We felt like the big house was more important than the field hands . . . . If the Senate got that letter, it had to come through us, we had to have contact with that letter. And they just seemed like they didn't want to hear that."

All participants were within the defined "high-risk" category, based on their physical proximity to zones of contamination. Yet participants' perception of their risk varied substantially, according to participants' judgments about their level of anthrax exposure and their sense of vulnerability to becoming ill.

Knowledge of Personal Exposure. Nasal swab testing is an epidemiologic screening tool but not one used for disease diagnosis or treatment; its use strongly influenced many participants' perception of risk. People who were informed that their swab was positive concluded that they were at highest risk. In contrast, many participants mistakenly interpreted negative swab results as a signal that they were at low risk, as did a male employee at the HSOB who said, "Obviously, when I got the negative swab results, I felt pretty much in the clear."

In addition, many Brentwood postal workers never received their swab results. This generated anger at public health officials, exemplified by the postal worker who described public health officials' response to questions about the swabs as "no news is good news" and went on to say that "you don't work that way when you're talking about human beings. You [public health officials] took a test, the least you could do is call us back and say, 'Well, your test came out negative,' or 'Your test came up with some signs of anthrax.' But they didn't do that." A number of the postal workers also believed that if they weren't given the swab results, then the results were positive. One worker said, "They never gave us the results. And the only thing I can make out of that was that they were getting a positive result."

Physical Proximity and Cues. Those without positive swab results used a variety of visible and nonvisible cues to judge their level of anthrax exposure ( Table 3 ). For example, perceived risk of exposure was highest in HSOB staffers who described having seen the powder after the envelope was opened or who handled the letter. As one male employee at the HSOB related, "When I saw the envelope [on TV] that I had recognized from the Friday before, I knew that my hands had been all over it. . . . I don't know that I've ever been that scared ever. I was absolutely freaking out." Those who did not have these experiences, and who were not physically close to known danger areas such as Senator Daschle's office, the freight elevator where spores were found, and the office ventilation system, felt themselves to be much less at risk.

Brentwood postal workers were unable to use physical proximity to judge their level of risk. Spores were found throughout the BPF, and illnesses and deaths of coworkers were not centralized by location or job type. For these reasons, there was little variation in perceived risk of exposure among Brentwood postal workers; all believed their risk was quite high. As one female postal worker remarked, "I saw those men everyday . . . everyone knew that when they clean the machine it blows dust everywhere, so we were all at risk, not just the guys on the machines."

Susceptibility and Symptoms. Perceptions of risk were often influenced by participants' perceptions of how susceptible they were to becoming ill with anthrax if exposed, with many older individuals believing they were at greater risk than younger colleagues. Conversely, other participants mentioned other medications they were taking or their hardier constitution as protecting them. Feelings of susceptibility were also heightened in people who had a cough or a cold. In contrast, several participants who prematurely discontinued antibiotics cited the absence of any symptoms of anthrax after a few weeks as an indication that they had not been exposed. As one postal worker said, "I wasn't sick; why did I need medicine?"

To make decisions about taking antibiotics, participants used many sources of information about anthrax infection, risks of exposure and susceptibility, and benefits and risks of treatment options ( Table 4 ). Announcements, meetings, and notifications from public officials figured prominently, particularly in the first days of the crisis. But so did conversations with family members, friends, and coworkers and information from the news media and the Internet. One postal worker described how "most of the information that came up the whole time came through the news and on TV. Then it started coming from our family and friends. And we started networking and talking to each other."

Coworkers, friends, and family not only encouraged participants to begin the antibiotics, but urged them to continue taking them. One postal worker described how her decision was influenced most by her daughter: "Because she [her daughter] knows that I don't like to be taking different things. And she was like, 'You take it, Mama, because you were there.' So that influenced me [and] I took the Cipro." Participants were also influenced by coworkers' decisions to take or not to take antibiotics. As one HSOB staffer said, "My coworkers and colleagues are smart people . . . and I guess if they're going to take it, I might as well, too."

Personal physicians, and family friends or relatives who were physicians, also figured prominently in decisions about taking the medications. More than two-thirds of our participants got specific advice about taking the medication from a private physician. Slightly fewer than half of these participants reported that their physician strongly supported the recommendations made by public health officials: One postal worker described "finding a medical professional I could trust and sticking with what he said and my coworkers said. I picked the people I trusted and blocked out everything else." However, other participants reported that their physicians did not support, or actively disagreed with, the recommendations of public health officials: A postal worker described how her doctor "listened to my complaints, about my body irks and twirks, and I told her about what we went through, and she told me that she wouldn't take it, so I stopped taking the medication."

Deciding to continue to adhere to the antibiotics involved weighing the benefits of continued prophylaxis against concerns about the long-term consequences of antibiotic use, such as the side effects and symptoms participants attributed to the medication (e.g., skin problems, fungal infections, joint problems, neurological effects, etc.). Most participants experienced side effects that they believed to be related to the antibiotics, and some participants had severe side effects.

Decisions about preventive measures, such as wearing gloves and masks or being vaccinated, involved similar weighing of pros and cons. For example, wearing gloves and masks was a minor inconvenience (in fact, many postal workers were already routinely wearing gloves while handling mail), but few participants viewed wearing gloves and masks as a real preventive measure for anthrax, believing that such measures would not protect them from inhaling spores. As one postal worker said about the masks, "The anthrax particles are so small and fine that they'd pass through it regardless. If you didn't have a breathing apparatus, it wasn't going to do you any good anyway."

All of the major themes were prominent in participants' descriptions of their decisions, and adherent and nonadherent individuals had many thoughts, feelings, and experiences in common. For example, both adherent and nonadherent participants had similar perceptions of the public health response. There was also no significant difference between adherent and nonadherent individuals with respect to their experiences with medication side effects. Many individuals with side effects remained on the medication, as did one postal worker who noted, "I just had to stay on it as a precaution, even though it made me feel sick." However, others with side effects chose to reduce their dosage.

In addition, with the exception of the few participants who had positive nasal swab results (all of whom completed the course of antibiotics and were vaccinated), adherent and nonadherent individuals gave similar descriptions of their own initial reactions upon learning about the anthrax and their decision to start antibiotics. They spoke of being afraid, uncertain about their level of risk, and concerned about the risk to their own health; many also expressed concern about their families' health. The initial uncertainty and fear, which for postal workers increased significantly upon learning of the deaths of their coworkers, was often related to beginning the antibiotics. One postal worker echoed the sentiments of everyone: "I did not really want to take the drugs, but, again, out of fear and [a] kind of uncertainty and the unknown . . . I did do it [take the drugs]."

Over time, however, participants' decisions about continuing antibiotics were influenced by other factors. Participants who took the full recommended course of antibiotics were more likely to mention ongoing support and encouragement from family and friends. Such comments were far less common among participants who did not follow the recommended regimen.

Private physicians' advice also appeared to strongly influence participants' decisions to adhere. Of participants who reported that their physician told them to take the medication as directed by public health officials, all but one did so. In contrast, of participants who reported that a private physician didn't clearly advise them to adhere to public health recommendations -- either by being vague about the public health recommendations regarding antibiotics or contradicting the recommendations -- fewer than one in five took the antibiotics as recommended.

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