Similar to previous studies4,5,6,7,8,9,10,11,12
, our results indicate that vasculitis has negative effects on patients’ physical and mental quality of life. Vasculitis patients scored lower than the general US population (ages 55–64 yrs) on every HRQOL dimension. Further, compared to patients in remission, relapsing patients reported significantly worse quality of life on all physical and mental health dimensions except physical role limitations, which trended toward significance. Relapses exacted a physical and mental toll on patients’ HRQOL over and above what was experienced during remission.
Our results are similar to those of Linde and colleagues28
, who found that patients with rheumatoid arthritis with higher physician-rated disease activity reported statistically significant reductions in HRQOL compared to patients in remission and to the general US population. In contrast, a review article by McElhone and associates29
concluded that the correlation between physician-rated disease activity and HRQOL was weak or nonexistent for patients with systemic lupus erythematosus. Similarly, Koutantji and colleagues8
found no association between disease activity and HRQOL for patients with primary systemic vasculitis. Thus, findings regarding the effect of disease activity on HRQOL remain mixed.
Support from physicians and partners was associated with better physical and mental health, as found with previous studies15,16,17,18,19,20,21,22,23,24
. However, support was not associated with bodily pain or vitality. One might expect that medication-related support would have a greater influence on pain and vitality because improved adherence to medication might be related to a decrease in symptoms. It appears that support from physicians and partners in this study had a weaker effect on physical symptoms than on a general sense of well-being that arose from perceiving others as caring. Thus, medication-related support may have yielded stronger associations with more general outcomes, such as physical and social functioning, than on more specific physical symptoms. The data from this study, however, cannot confirm that interpretation.
We did not find evidence that relapsing disease status moderated the effect of social support on HRQOL, but it is difficult to put these results into a broader context because there has been little work in this area. One study by Bae and colleagues30
found that social support was more beneficial for lupus patients’ physical functioning during periods of lower disease activity in contrast to greater disease activity. The discrepancy between our results and those of Bae, et al
may be due to the use of a patient-reported, rather than a physician-reported, measure of disease activity. Because patients have access to information about their own illness experiences that may be difficult for physicians or other observers to incorporate into their disease activity ratings, observing patients’ personal experiences about how their illness affects them seems necessary to predict HRQOL. Ideally, future research will incorporate both patient and physician-reported disease activity measures to determine whether each measure offers unique information in the prediction of HRQOL.
Although the pattern of slopes for physician and partner support were consistent with moderation, the disease status-by-support interaction terms in the multivariate models were not significant. One possible explanation is that relapsing disease status was so strongly associated with HRQOL that it did not leave much additional variation for the interaction term to explain. If we had more relapsing patients in our sample, we may have been able to detect a significant interaction term. Future studies should attempt to recruit a larger sample of relapsing patients and compare them to patients in remission and healthy controls to determine whether the trends seen in our results are replicable and statistically significant.
Our results suggest that gender may act as a moderator of the relationship between support and HRQOL, although we did not formally test this interaction due to small cell sizes that resulted from further dividing the sample. As documented by Revenson and colleagues31
, there are substantial differences in how men and women cope with chronic illness. Thus, research exploring whether women benefit more from support during a relapse than men is warranted.
Generalizability is limited by our sample’s lack of diversity, which was predominantly older, female, and white. Because the study surveys were completed online, our sample may have been more motivated, better educated, and had greater resources than the general vasculitis population, possibly contributing to the lack of a significant interaction between support and disease status. Additionally, self-reported diagnoses of vasculitis may not be completely accurate. For our analyses, we grouped multiple types of vasculitis patients together (e.g., Takayasu’s arteritis, Churg-Strauss syndrome, microscopic polyangiitis) in order to compare them to ANCA-associated granulomatous vasculitis. It is possible that this grouping masked differences in quality of life attributable to permanent disease damage, which can differ for different types of vasculitis32
. Further, our ability to assert a causal relationship between support and HRQOL is limited because we were unable to control for baseline HRQOL. Finally, because we combined “not applicable” responses with “does not do this” responses for our social support measures, we cannot differentiate between people who thought support was unimportant/unnecessary from those who thought support mattered but were not receiving it. More sophisticated measures of support that include a response category such as “I do not need this type of support” could be used in the future to make distinctions between those who want but are not receiving support and those who do not want support.
Our findings indicate that vasculitis negatively affects patients across multiple quality of life domains and that relapses further compromise patients’ physical and mental functioning. Social support from physicians and partners helped reduce the negative impact of vasculitis on HRQOL regardless of where patients were in the cycle of relapse and remission. Because social support was not associated with improvements in pain or vitality, addressing treatment options for physical symptoms during office visits may benefit patients more than simply offering medication-related support. Even though physicians have less frequent contact with patients than partners, physician support positively affected patients’ physical and mental quality of life. Thus, conveying support to the patient during office visits may exert a lasting, positive effect. Replication of our results with larger samples and more general support measures is necessary before concluding that social support is equally beneficial for patients during relapse and remission.