This study assesses preferences regarding treatment with biologics and JAK inhibitors and heterogeneity within these preferences among patients with RA as well as estimates of the relative importance of different treatment characteristics. In addition, this study calculates the minimum benefit levels patient require in order to accept higher levels of potential side effects. Respondents found either effectiveness of treatment, mode of administration, or probability of severe side effects to be most important. This study also reveals that disease duration and experience with mild side effects had an impact on patients’ choices. For newly-diagnosed patients with no experience of mild side effects, mode of administration (with oral administration being most preferred) was the most important treatment attribute. This preference might be due to wanting a treatment that fits with current lifestyle, since taking a pill is less invasive and more convenient than a self-administered injection or having a daily infusion . In addition, participants might find it easier to understand the impact of mode of administration on daily life, whereas relatively small changes in side effects may be more complicated to understand.
Findings from this study are in line with previous research reporting on different patterns of preferences of patients with RA, as the importance of effectiveness and severe side effects [2, 3, 12]. However, the attributes and levels for this study address more side effects in the choice questions, such as the probability of psychological side effects or side effects affecting appearance and the probabilities of these side effects.
For patients whose choices were most influenced by treatment effectiveness, the impact of side effects on decision making was marginal. These patients might be recognised as a subgroup with increased willingness to accept higher risk of side effects for an increase in effectiveness. Such patients might be willing to try a new orally-administered treatment even though there is uncertainty regarding long-term outcomes. Newly-diagnosed patients preferred an oral medication over all other attributes; however, they did not accept an increased risk of severe side effects. Similarly, patients with longer disease duration and experience with mild side effects were less willing to accept a treatment with a higher risk of severe side effects.
Previous studies have revealed that rheumatologists and patients with RA have different treatment preferences [14, 30]. This study could support rheumatologists and patients in shared-decision making by identifying which attributes should be the focus of treatment discussions. This study has also revealed the trade-offs that patients with RA are willing to make, a finding that may help patients recognise what is most important from an individual perspective. Tailoring treatment according to patients’ preferences may increase treatment satisfaction and compliance, which could improve treatment outcomes in patients with RA .
For regulatory decision-making, considering preference heterogeneity in marketing authorisations or in post authorisations may lead to decisions that are more acceptable to the end users. Treatment satisfaction may increase for patients with a higher acceptance of side effects if the prospect of effectiveness is higher [31, 32].
There are some limitations of this study. First, several sources were used to recruit patients with RA and there was limited control over patient selection, it was not possible to calculate the response rate. However, respondents were only able to participate at one time and no duplicates were found in the patient sample. The patient characteristics (age, gender, education and treatment experience) suggest a representative sample of the Swedish RA population . This article provides a useful addition to the literature by assessing the Swedish population. The results may not be generalizable to other European countries as the health care systems are different. However, there are some concordance between the results of similar, previous studies in a range of countries .
Future research should focus on other important disease-related characteristics such as disease activity and risk propensity, characteristics that may influence respondents’ preferences. Research needs to develop methods and guidelines to bring in the results of patient preference assessments in both regulatory marketing approval decisions and in the clinical context of shared decision making.