To our knowledge, this is the first study to describe vasculitis patients' medication information-seeking behavior. Our results revealed that, in some ways, vasculitis patients possess source preferences and credibility ratings that are similar to those of other patient groups. For example, cancer patients, like vasculitis patients, sought information most often from health care providers and the Internet (Rutten et al., 2005
), with physicians rated as their most trusted information source (Hesse et al., 2005
). In addition, vasculitis patients' use of written materials, such as medication package inserts and books, mirrors that of other patient populations (Huber & Cruz, 2000
; Rutten et al., 2005
There may also be important differences in the types of sources that vasculitis patients consult when compared with other patient groups. For example, when compared with HIV (Huber & Cruz, 2000
) and cancer patients (Rutten et al., 2005
), vasculitis patients appear to use support groups more often and family and friends less often. Specifically, patients in our study ranked support groups as their fourth most frequently used source, whereas family and friends (other than the spouse) were ranked among the least used sources; other studies have found that family and friends are used more often than support groups (Huber & Cruz; Rutten et al.). That vasculitis is a rare disease could partially explain this finding. Whereas a high percentage of people living in the United States probably know someone with cancer or have seen a story about an HIV-positive person, it is unlikely that they know someone living with vasculitis. In the absence of family and friends who are knowledgeable about the disease, patients may view vasculitis support groups as more reliable sources of medication information.
We found that vasculitis patients may underuse nonphysician health professionals such as nurses and pharmacists for medication information. Even though patients rated pharmacists as fairly credible information sources, they were only consulted rarely to sometimes during the past year. Nurses were consulted even less frequently, which makes sense given that most medical practices and hospitals do not have nurses specifically trained in vasculitis care. It is unclear whether patients did not use pharmacists and nurses because they obtained the medication information they needed from other sources, such as physicians and the Internet, or because there were access issues, whereby it was difficult to contact nurses or pharmacists. Future studies that are qualitative in nature may help elucidate why vasculitis patients did not consult nonphysician health professionals often for medication information.
We were surprised by the magnitude of the gender difference in how vasculitis patients view and use their spouse/partner as an information source. Male patients ranked their spouse/partner as their third most used and fourth most trusted source of medication information. In contrast, female patients ranked their spouse/partner as their least used (out of a list of 12 sources) and least credible (out of a list of 6 sources) source of information.
There are several possible explanations for the aforementioned finding. First, women seek more health information from more sources than men (Huber & Cruz, 2000
; Mayer et al., 2007
; Rutten et al., 2005
). Hence, for women, the relative credibility of partners may decrease when compared with information from more objective sources such as pharmacists, written materials, and the Internet. Alternatively, gender roles and socialization may explain why male and female patients have dramatically different opinions of their spouse/partner as a source of medication information. In Western societies, women often take on a nurturing role, which may make them feel responsible for the health of their family members, including partners (Gabriel & Gardner, 1999
). Hence, women may feel that it is their duty to research multiple aspects of their partner's disease, including its treatment. Alternatively, men are socialized to be strong and resistant to illness (Lee & Owens, 2002
), which may make them less likely to seek medical services and information (Verbrugge, 1985
). Because we did not ask participants to report their spouse/partner's gender, we cannot verify that all spouses of male patients were female. In addition, female participants were younger, more likely to be international participants, less likely to be married, and had been living with vasculitis for a shorter amount of time than male patients, although it is unlikely that these demographic differences were primarily responsible for our findings.
Medication package inserts, the Internet, and nurses represent three other sources that men and women used differently. Women consulted package inserts and the Internet more often than men did, whereas men were more likely than women to consult nurses. Again, we believe the fact that women search for information from more sources than men may explain why they used package inserts and the Internet more frequently. However, we do not have an explanation for why men seek health information from nurses more frequently than women. To reduce respondent burden, we did not ask participants to rate the perceived credibility of all 12 sources. It could be that men believe nurses are more credible sources of information than women do; thus, they consult them more often. Future studies should ask participants to rate the credibility of all sources to determine whether credibility is the driving force behind gender differences in source use.
None of the demographic and clinical variables that we included in our multivariate model had a significant effect on how often patients' consulted different information sources. The relative homogeneity of vasculitis samples (predominately White, middle-aged and well-educated) make it difficult to assess the effect of these potential moderating variables. Also, because we did not have many international participants (n
= 48), we did not have sufficient power to detect inter-country differences in information seeking. Although phase of illness has been associated with information seeking in previous research (Rutten et al., 2005
), our disease status variable was not a significant predictor in our sample.
Because we used an online survey to collect data, the results of our study, especially findings regarding the Internet, should not be generalized to the greater vasculitis population. It is likely that non–Internet users have markedly different opinions about the credibility of Internet sources. Researchers who are interested in non–Internet-using patients could use pen-and-paper surveys or telephone interviews to capture the information source preferences of this group. Our low response rate to our mailed recruitment efforts further limits our ability to generalize the study findings.
The baseline questionnaire asked participants to report their medication information source use during the past year. This retrospective examination of information seeking is a limitation of our study that is subject to recall bias. Longitudinal studies that examine patients' information-seeking behavior over the course of their illness are a logical next step, particularly because source use has been shown to change over time (Mills & Davidson, 2002
; Rutten et al., 2005
; Squiers, Rutten, Treiman, Bright, & Hesse, 2005
). Moreover, our assertion that vasculitis patients differ from other patient groups is speculative at this point, especially because we are comparing results that are specific to medication information to more general studies of health information seeking. Additional research should recruit samples of patients with different diseases to determine whether disease type truly influences information source use and preference. A comparison of a common disease, such as arthritis or diabetes, with a rare disease, such as vasculitis, may be particularly enlightening.