Physical function and severe side effects matter most to patients with RA (< 5 years): a discrete choice experiment assessing preferences for personalized RA treatment.

AIM: Early assessment of patient preferences has the potential to support shared decisions in personalized precision medicine for patients with rheumatoid arthritis (RA). The aim of this study was to assess treatment preferences of patients with RA (< 5 years) with previous experience of inadequate response to first-line monotherapy. METHOD: Patients were recruited (March-June 2021) via four clinics in Sweden. Potential respondents (N = 933) received an invitation to answer a digital survey. The survey included an introductory part, a discrete choice experiment (DCE) and demographic questions. Each respondent answered 11 hypothetical choice questions as part of the DCE. Patient preferences and preference heterogeneity were estimated using random parameter logit models and latent class analysis models. RESULTS: Patients (n = 182) assessed the most important treatment attributes out of physical functional capacity, psychosocial functional capacity, frequency of mild side effects and likelihood of severe side effects. In general, patients preferred a greater increase in functional capacity and decreased side effects. However, a substantial preference heterogeneity was identified with two underlying preference patterns. The most important attribute in the first pattern was the 'likelihood of getting a severe side effect'. Physical functional capacity was the most important attribute in the second pattern. CONCLUSION: Respondents focused their decision-making mainly on increasing their physical functional capacity or decreasing the likelihood of getting a severe side effect. These results are highly relevant from a clinical perspective to strengthen communication in shared decision making by assessing patients' individual preferences for benefits and risks in treatment discussions.

Making space for patients' preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis.

OBJECTIVE: Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment. DESIGN: Semistructured interviews were conducted to explore patients' perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals. SETTING: An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020-February 2021) via Zoom or telephone, depending on each participant's preferences. PARTICIPANTS: Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18-80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews. RESULTS: Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals. CONCLUSION: Communication between patients and healthcare professionals needs to be more focused on patients' individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.

Functional capacity vs side effects: treatment attributes to consider when individualising treatment for patients with rheumatoid arthritis.

INTRODUCTION: Individualisation of rheumatoid arthritis (RA) treatment needs to take account of individual patients' preferences to increase patient-centeredness in treatment decisions. The aim of this study was to identify patient-relevant treatment attributes to consider when individualising treatment for patients with RA. METHOD: Patients with RA in Sweden were invited to rank the most important treatment attributes in an online survey (April to May 2020). Semi-structured interviews were conducted (October to November 2020) to further identify and frame potential attributes for shared decision-making. The interviews were audio-recorded, transcribed and analysed using thematic framework analysis. Patient research partners and rheumatologists supported the selection and framing of the treatment attributes across the assessment. RESULTS: The highest ranked attributes (N = 184) were improved functional capacity, reduced inflammation, reduced pain and fatigue and the risk of getting a severe side effect. The framework analysis revealed two overarching themes for further exploration: treatment goals and side effects. 'Treatment goals' emerged from functional capacity, revealing two dimensions: physical functional capacity and psychosocial functional capacity. 'Side effects' revealed that mild and severe side effects were the most important to discuss in shared decision-making. CONCLUSIONS: Functional capacity (physical and psychosocial) and potential side effects (mild and severe) are important treatment attributes to consider when individualising RA treatment. Future research should assess how patients with RA weigh benefits and risks against each other, in order to increase patient-centeredness early on the treatment trajectory.