Page 139 - Recognizing axial spondyloarthritis - Janneke de Winter

DISCUSSION
The results of our study suggest that: 1) 67% of individuals at increased risk to develop SpA is willing to use preventive medication when the hypothetical risk to develop SpA is 30%, increasing to 97% when this risk is 70%, if the medication would not cause any side effects. 2) Potential side effects lower the willingness to use preventive medication to 27% and 52% with 30% and 70% disease risk, respectively. And 3) the willingness to use preventive medication is influenced by the participants’ own perception of the severity of the disease and the disease risk, regardless of the given hypothetical risk.
In a previous study in RA using a comparable study population, approximately one third of the participants chose to take preventive medication if the risk of developing RA was 20-40%, with a varying risk of side effects (9). This is concordant with the findings of our study that approximately 30% of participants is willing to use medication with a 30% risk of developing SpA and the possibility of side effects.
Studies to investigate the willingness of individuals to use medication in a preventive setting have been performed in other diseases than axSpA. Port et al investigated the willingness of women eligible to use tamoxifen for breast cancer prophylaxis, and showed that the vast majority declined because of side effects (10). Another study performed in Denmark investigated whether individuals would use preventive treatment for cardiovascular disease; in this study, more than half of respondents who were initially willing to use this medication declined after hearing about side effects (11). Interestingly, in our study the willingness to use preventive medication also dropped by 50% when mild side effects might occur, despite the fact that these side effects would stop directly after quitting the preventive medication. Together with our study results, these results emphasize the importance of thorough education of at-risk individuals with regard to their risk profile and the preventive therapy that is offered.
Our study has several strengths. First, the Pre-SpA cohort is by our knowledge the only cohort of first-degree relatives (FDRs) of axSpA patients, representing a unique opportunity to study a population at increased risk for developing SpA. Second, the high response rate (81.5%) suggests that the subject is of relevance for participants.
Our study has also limitations. First, some of the theoretical values that were used in this study are extremes (e.g. the efficacy of medication (100%) and risk to develop SpA (70%)). However, the scope of this study is not to deduct a fixed willingness, but to conclude that there is a reasonable willingness that is fluctuating with the magnitude of the risk to develop SpA, the risk to develop side effects and the effectiveness of the medication. Previous research showed that participants may encounter difficulties in interpreting percentages and complex hypothetical scenarios (12), therefore we chose a limited amount of scenarios and chances. Second, FDRs of axSpA patients included in Pre-SpA might be more inclined to take preventive medication than non-participating FDRs because of
PREVENTIVE MEDICATION IN AXIAL SPA
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EIGHT