BackgroundAs healthcare systems undergo rapid digital transformation digital health literacy has become a critical determinant of equitable access to health services. Immigrants often additional challenges in navigating digital health resources due to language barriers, cultural differences and structural inequalities. This study aimed to compare the experiences of immigrants in Spain and Sweden in accessing and using digital health information, and to identify strategies to enhance digital health literacy within these populations.MethodsA comparative qualitative study was conducted in Sweden and Spain within the framework of the IDEAHL Project (Improving Digital Empowerment for Active Healthy Living). Participants were recruited through non-governmental organisations and community spaces supporting immigrant integration. Data were collected using semi-structured interviews, group discussions, and photovoice techniques. In Sweden, sessions were audio-recorded and transcribed verbatim, whereas in Spain, detailed field notes were taken and validated by facilitators. A comparative thematic analysis was conducted to identify commonalities and differences.ResultsA total of 44 immigrants (20 in Sweden and 24 in Spain) participated in the study. Across both countries, participants frequently used digital platforms such as Google and YouTube to search for health-related information. However, they encountered persistent barriers related to language, digital skills, trust in online content and access. Swedish participants emphasised empowerment and the need for culturally adapted digital tools, while Spanish participants highlighted structural barriers such as legal status. limited access to e-Health services, and reliance on traditional healthcare providers. Both groups expressed a strong need for trustworthy, accessible, and easy-to-understand digital health content, as well as greater involvement of healthcare professionals in guiding digital health use.ConclusionsImproving digital health literacy among immigrant populations requires coordinated action from healthcare professionals, policymakers, and primary care providers. Strategies should include multilingual and interactive digital tools, training in critical evaluation skills, and co-design approaches that actively involve immigrants in the development of digital health solutions. The similarities observed between Spain and Sweden suggest that inclusive, person-centred strategies can be effectively adapted across diverse European contexts to promote digital equity and health system resilience.
Children’s occupational aspirations begin forming at an early age and there are multiple social, educational, and experiential factors that may affect them. These aspirations are still poorly understood in the context of presumptive labour markets, however. This study aimed to elucidate the frequency, influences, and rationale regarding the occupational ambitions of children attending grades 1–5 in elementary schools in a region of Sweden, and to compare these to expected labour market demands when they might enter the workforce. The internationally established Drawing the Future method was employed to obtain answers from 1832 pupils, who drew 409 unique occupations within about one third of all possible standard occupational classification categories for Sweden. Only six categories contained an occupation drawn by more than 4
Objectives This study aimed to explore what intervention specificities or attributes newly diagnosed individuals with multiple sclerosis (MS) find important and to explore possible reasons behind their evaluations.Design A stepwise approach began with a systematic literature review to identify significant attributes. Patients with MS then assessed these attributes through an online survey, which included a ranking exercise and open-ended questions. Finally, the results were evaluated by the clinical team to select the most relevant factors for personalised care.Setting and participants From June 2023 to December 2023, all consecutive patients referred to the MS Center of Careggi University Hospital were screened for inclusion. Following recruitment, cognitive and physical assessments were administered at the Don Gnocchi Centre. All participants were interviewed by an experienced neuropsychologist.Procedures Participants were enrolled in the RELIABLE clinical trial, which included a ranking exercise and open-ended question. In the ranking exercise, patients prioritised levels of treatment attributes: treatment effects, methods of intervention, type of monitoring, monitoring, mode and mental support. The open-ended questions addressed the reasons behind the level rankings.Results Participants’ rankings revealed the most important levels of each attribute. The highest-ranked method of intervention was disease-modifying treatment, which received 164 points. For mental support, individual psychotherapy was deemed most important with 149 points. Preservation of cognitive function, a key treatment effect, received 144 points. Clinical check-ups were the top type of monitoring with 129 points. Lastly, the hybrid mode of monitoring (half remote/half in-person) was ranked with 77 points. Open-ended responses provided insights into the reasons behind these preferences, emphasising the importance of maintaining mobility, cognitive function and emotional well-being. The clinical team evaluated these findings, confirming that the selected attributes were both clinically relevant and aligned with patient priorities. This evaluation process ensured that the treatment specificities chosen for individualised care were comprehensive and reflective of patient needs.Conclusions By identifying and prioritising key treatment attributes, this research highlights the multifaceted nature of MS management and emphasises the importance of aligning treatment options with patient preferences. Addressing these factors through further quantitative preference assessments is essential for preventative MS care, improving patient outcomes and promoting a more patient-centred approach to treatment.
The digital transformation in healthcare calls for an inclusive approach to promote digital health literacy, to increase access to digital healthcare services. The objective of this study was to explore the key barriers and opportunities experienced by individuals with immigrant backgrounds in Sweden, providing insights to strengthen digital health literacy across the European Union (EU). A total of 20 participants with immigrant backgrounds in Sweden were interviewed using a semi-structured interview guide developed as part of the EU-funded IDEAHL project. Interviews were conducted in group or individual settings. The data was transcribed and analyzed using qualitative content analyses. Key challenges to digital health literacy were identified, including a lack of support in navigating digital healthcare services. Participants highlighted the potential of digital support tools to simplify healthcare interactions, allowing patients to evaluate symptoms and concerns before consulting healthcare professionals. They also emphasized the importance of integrating cultural considerations to aid healthcare providers in delivering culturally sensitive care. Furthermore, participants noted difficulties in actively participating in shared treatment decisions, often due to cultural beliefs about deferring to healthcare professionals. Expanding access to digital health services requires inclusive interventions to support the integration of minority communities into the digital health landscape. Addressing the diverse needs within immigrant populations is crucial to support equitable digital health access.
Whether or not to allow socialisation between parents and children in out-of-home care presents a difficult ethical challenge for those social work professionals who need to make an assessment about what to do. In this as well as in other contexts, it is widely assumed that the principle of the best interest of the child (BIC) is both the legal and moral standard for decision-making for children. Yet, from a moral philosophical perspective it is not entirely clear how this principle should be understood, and in the applied ethics literature it has been suggested that BIC should be rejected. In this paper, we defend BIC as the moral standard for ethical decision-making concerning children. We offer an interpretation of BIC that is both plausible from a moral philosophical point of view and that may offer practical guidance for those assessing whether it is morally defensible to restrict social contact between parents and children placed in out-of-home care. Based on our interpretation of BIC, we develop a tentative step-by-step procedure that may help guide social workers and relevant decision-makers when assessing moral reasons for whether to allow or restrict the right to socialisation between parents and children in out-of-home-care.
IntroductionResearch on young children’s occupational aspirations and the factors shaping them is still limited, especially in early interventions addressing gender disparities in high-status fields like STEM.MethodsThis is the first study in Sweden utilizing the Drawing the Future method, surveyed 1,832 children (aged 5–13) from 28 schools in Skåne region of southern, asking them to draw their dream jobs. This exercise was conducted in a classroom setting and facilitated by their class teacher.ResultsSignificant gender differences emerged, revealing distinct stereotypical patterns in children’s future occupational aspirations and influencing factors. Only three occupations—footballer, doctor, and police officer—were popular among both genders. Girls preferred people- or animal-centered roles, while boys leaned toward jobs involving “things” (p < 0.001). Girls felt they could pursue similar careers as boys, but boys showed more skepticism (p < 0.001). Influence patterns also varied by gender: 25% of girls were inspired by mothers, while 45% of boys were inspired by fathers (p = 0.02). Beyond immediate family, girls often sought career information from acquaintances, while boys turned to media (p < 0.001). STEM interest was limited, with “game developer” being the only STEM job on boys’ lists. Additionally, a larger proportion of boys ranked STEM subjects among their top 10 favorite school subjects, while girls preferred crafts, art, and English (p < 0.001).DiscussionThese findings highlight the need for early, unbiased, evidence-based career interventions and policies to broaden children’s awareness of diverse job options and opportunities in the labor market.
Background When selecting samples for patient preference studies, it may be difficult or impractical to recruit participants who are eligible for a particular treatment decision. However, a general public sample may not be an appropriate proxy. Objective This study compares preferences for rheumatoid arthritis (RA) preventive treatments between members of the general public and first-degree relatives (FDRs) of confirmed RA patients to assess whether a sample of the general public can be used as a proxy for FDRs. Methods Participants were asked to imagine they were experiencing arthralgia and had screening tests indicating a 60% chance of developing RA within 2 yrs. Using a discrete choice experiment, participants were offered a series of choices between no treatment and 2 unlabeled hypothetical treatments to reduce the risk of RA. To assess data quality, time to complete survey sections and comprehension questions were assessed. A random parameter logit model was used to obtain attribute-level estimates, which were used to calculate relative importance, maximum acceptable risk (MAR), and market shares of hypothetical preventive treatments. Results The FDR sample ( n = 298) spent more time completing the survey and performed better on comprehension questions compared with the general public sample ( n = 982). The relative importance ranking was similar between the general public and FDR participant samples; however, other relative preference measures involving weights including MARs and market share differed between groups, with FDRs having numerically higher MARs. Conclusion In the context of RA prevention, the general public (average risk) may be a reasonable proxy for a more at-risk sample (FDRs) for overall relative importance ranking but not weights. The rationale for a proxy sample should be clearly justified. Highlights Participants from the general public were compared to first-degree relatives on their preferences for rheumatoid arthritis (RA) preventive treatments using a discrete choice experiment. Preferences were similar between groups in terms of the most important and least important attributes of preventive treatments, with effectiveness being the most important attribute. However, relative weights differed. Attention to the survey and predicted market shares of hypothetical RA preventive treatments differed between the general public and first-degree relatives. The general public may be a reasonable proxy for an at-risk group for patient preferences ranks but not weights in the disease prevention context; however, care should be taken in sample selection for patient preference studies when choosing nonpatients.
BACKGROUND:A more digitalised world comes with the promise to improve people's lives. Therefore, it is essential that policymakers also align digital interventions with initiatives to empower citizens and strengthen their digital health literacy. The aim of this study was to explore the views of Swedish policymakers regarding the potential and barriers of a European strategy to strengthen digital health literacy. METHOD:Representatives from Swedish governmental agencies and regions were purposively approached by email to ask them to participate in online workshops to discuss the potential and barriers of developing a European strategy to strengthen digital health literacy. RESULTS:The results highlight the need for a national strategy to strengthen digital health literacy. The findings point to critical areas for improvement, ethical and social considerations, and the importance of inclusive and accessible health information online. Participants identified vulnerable groups requiring targeted support to enhance their digital health literacy, particularly those at risk of digital exclusion. Participants emphasised the importance of considering various combinations of conditions or problems that people may have, urging policymakers to adopt a nuanced approach to enhance digital literacy. CONCLUSIONS:There is a critical need for policymakers to strengthen digital health literacy in the population to ensure health equity in relation to digitalisation opportunities. Policymakers advocate for a dedicated national strategy, supporting policymakers to prioritize digital health literacy. Tailoring information, enhancing digital support for prevention, and considering ethical implications are reported as important aspects to improve digital health literacy.
Background Multiple sclerosis (MS) is a chronic inflammatory disorder affecting the brain and spinal cord, characterized by immune-mediated myelin damage. Early intervention and detection programs have emerged as promising strategies to improve patient outcomes by identifying and treating MS in its earliest stages. Objective This systematic literature review aims to provide an overview of the preferences, attitudes, and opinions of both patients and healthcare professionals regarding early intervention or early detection programs for MS. Methods A comprehensive search strategy was employed in March 2023 across multiple databases (MEDLINE, Scopus, PsyInfo, PubMed), from 1990 to 2023. A total of 38 articles were selected for analysis based on predefined inclusion and exclusion criteria. Results The majority of articles were published in recent years and represented different methods from case reports to randomized controlled trials, with fewer systematic literature reviews. Data collection approaches included patients, healthcare workers, or mixed samples with varying age ranges and gender ratios, frequently preferring women. These samples represented different preference study methods. The included studies were primarily conducted in the USA and the UK. Thematic analysis revealed several key themes : 1) differences emerged between healthcare professionals' and patients' perspectives 2) interventions for MS outside Disease-Modifying Therapies (DMTs) 3) severe side effects 4) communication, information, and knowledge 5) psychological and emotional aspects. Conclusions Understanding these diverse factors and subgroups within the MS population can inform more effective, personalized approaches to MS prevention and treatment.
BACKGROUND:New disease-modifying ways to treat Parkinson's disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future.METHODS:Patients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) available knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondents' preferences.RESULTS:A substantial difference in respondents' preferences was observed in three latent preference patterns (classes). "Effect on symptoms" was the most important attribute in class 1, closely followed by "type of treatment," with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on "type of treatment" in the decision-making. Respondents' class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs.CONCLUSIONS:Most of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells.
Objective Some immunomodulatory drugs have been shown to delay the onset of, or lower the risk of developing, rheumatoid arthritis (RA), if given to individuals at risk. Several trials are ongoing in this area; however, little evidence is currently available about the views of those at risk of RA regarding preventive treatment. Method Three focus groups and three interviews explored factors that are relevant to first degree relatives (FDRs) of RA patients and members of the general public when considering taking preventive treatment for RA. The semi-structured qualitative interview prompts explored participant responses to hypothetical attributes of preventive RA medicines. Transcripts of focus group/interview proceedings were inductively coded and analysed using a framework approach. Results Twenty-one individuals (five FDRs, 16 members of the general public) took part in the study. Ten broad themes were identified describing factors that participants felt would influence their decisions about whether to take preventive treatment if they were at increased risk of RA. These related either directly to features of the specific treatment or to other factors, including personal characteristics, attitude towards taking medication, and an individual’s actual risk of developing RA. Conclusion This research highlights the importance of non-treatment factors in the decision-making process around preventive treatments, and will inform recruitment to clinical trials as well as information to support shared decision making by those considering preventive treatment. Studies of treatment preferences in individuals with a confirmed high risk of RA would further inform clinical trial design.
Objective We aimed to empirically compare maximum acceptable risk results estimated using both a discrete choice experiment (DCE) and a probabilistic threshold technique (PTT). Methods Members of the UK general public ( n = 982) completed an online survey including a DCE and a PTT (in random order) measuring their preferences for preventative treatment for rheumatoid arthritis. For the DCE, a Bayesian D-efficient design consisting of four blocks of 15 choice tasks was constructed including six attributes with varying levels. The PTT used identical risk and benefit attributes. For the DCE, a panel mixed-logit model was conducted, both mean and individual estimates were used to calculate maximum acceptable risk. For the PTT, interval regression was used to calculate maximum acceptable risk. Perceived complexity of the choice tasks and preference heterogeneity were investigated for both methods. Results Maximum acceptable risk confidence intervals of both methods overlapped for serious infection and serious side effects but not for mild side effects (maximum acceptable risk was 32.7 percent-points lower in the PTT). Although, both DCE and PTT tasks overall were considered easy or very easy to understand and answer, significantly more respondents rated the DCE choice tasks as easier to understand compared with those who rated the PTT as easier (7-percentage point difference; p < 0.05). Conclusions Maximum acceptable risk estimate confidence intervals based on a DCE and a PTT overlapped for two out of the three included risk attributes. More respondents rated the DCE as easier to understand. This may suggest that the DCE is better suited in studies estimating maximum acceptable risk for multiple risk attributes of differing severity, while the PTT may be better suited when measuring heterogeneity in maximum acceptable risk estimates or when investigating one or more serious adverse events.
Objective: Patients have unique insights and are (in-)directly affected by each decision taken throughout the life cycle of medicinal products. Patient preference studies (PPS) assess what matters most to patients, how much, and what trade-offs patients are willing to make. IMI PREFER was a six-year European public-private partnership under the Innovative Medicines Initiative that developed recommendations on how to assess and use PPS in medical product decision-making, including in the regulatory evaluation of medicinal products. This paper aims to summarize findings and recommendations from IMI PREFER regarding i) PPS applications in regulatory evaluation, ii) when and how to consult with regulators on PPS, iii) how to reflect PPS in regulatory communication and iv) barriers and open questions for PPS in regulatory decision-making.Methods: PREFER performed six literature reviews, 143 interviews and eight focus group discussions with regulators, patient representatives, industry representatives, Health Technology Assessment bodies, payers, academics, and clincians between October 2016 and May 2022.Results: i) With respect to PPS applications, prior to the conduct of clinical trials of medicinal products, PPS could inform regulators' understanding of patients' unmet needs and relevant endpoints during horizon scanning activities and scientific advice. During the evaluation of a marketing authorization application, PPS could inform: a) the assessment of whether a product meets an unmet need, b) whether patient-relevant clinical trial endpoints and outcomes were studied, c) the understanding of patient-relevant effect sizes and acceptable trade-offs, and d) the identification of key (un-)favorable effects and uncertainties. ii) With respect to consulting with regulators on PPS, PPS researchers should ideally have early discussions with regulators (e.g., during scientific advice) on the PPS design and research questions. iii) Regarding external PPS communication, PPS could be reflected in the assessment report and product information (e.g., the European Public Assessment Report and the Summary of Product Characteristics). iv) Barriers relevant to the use of PPS in regulatory evaluation include a lack of PPS use cases and demonstrated impact on regulatory decision-making, and need for (financial) incentives, guidance and quality criteria for implementing PPS results in regulatory decision-making. Open questions concerning regulatory PPS use include: a) should a product independent broad approach to the design of PPS be taken and/or a product-specific one, b) who should optimally be financing, designing, conducting, and coordinating PPS, c) when (within and/or outside clinical trials) to perform PPS, and d) how can PPS use best be operationalized in regulatory decisions.Conclusion: PPS have high potential to inform regulators on key unmet needs, endpoints, benefits, and risks that matter most to patients and their acceptable trade-offs. Regulatory guidelines, templates and checklists, together with incentives are needed to foster structural and transparent PPS submission and evaluation in regulatory decision-making. More PPS case studies should be conducted and submitted for regulatory assessment to enable regulatory discussion and increase regulators' experience with PPS implementation and communication in regulatory evaluations.
Objectives Over the last few decades, there have been significant improvements in the treatment of rheumatoid arthritis (RA), with the development of new treatments and guidelines for teamwork and patient self-care and access to digital tools. This study aimed to explore the experiences of individuals with RA interacting with healthcare. It also looked at how a self-care application, an educational programme called the ‘healthcare encounter’, improved patient–doctor communication.Design Semistructured interviews were conducted, and qualitative content analysis was performed.Setting The potential participants, individuals with established, or under investigation for, RA diagnosis at rheumatology clinics in Sweden, were asked to participate in the study via a digital self-care application called the Elsa Science Self-care app.Participants Ten interviews were performed with participants from nine clinics following a meeting with the rheumatologist or other healthcare personnel between September 2022 and October 2022. Phrases, sentences or paragraphs referring to experiences from healthcare meetings and opinions about the digital programme were identified and coded. Codes that reflected similar concepts were grouped; subcategories were formulated, and categories were connected to their experiences and opinions.Results Among our participants, three main categories emerged: the availability of healthcare, individual efforts to have a healthier life and personal interaction with healthcare. Participants described that the ‘healthcare encounter’ educational programme can be a source of information, which confirms, supports and creates a sense of control.Conclusion The participants valued being seen and taking part in a dialogue when they had prepared themselves (observed symptoms over time and prepared questions). The implementation of digital self-care applications might need to be incorporated into the healthcare setting, so that both the patients and the healthcare personnel have a shared understanding. Collaboration is essential in this context.
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. 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. 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. 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. ▪ This study reveals that patients with RA (< 5 years) and inadequate response to first-line monotherapy have differing treatment preferences. They focus mainly on increasing functional capacity or on the likelihood of getting a severe side effect. ▪ Therefore, communication in shared decision-making needs to account for heterogeneity in patient preferences in order to increase patient-centeredness in personalized precision medicine. ▪ Future research needs to develop tools to strengthen patients in making shared decisions with health care professionals in order to improve personalized precision medicine.
Abstract Background Parkinson’s disease (PD) has been considered to be one of the most promising target diseases for forthcoming cell-based therapy. The aim of this study is to explore the views of individuals with cryopreserved embryos on using human embryonic stem cells for treating PD. Methods The study was performed as a qualitative, semi-structured interview study in June–October 2020. Participants were recruited at a private fertility clinic located in one of the larger Swedish cities. The clinic provides both publicly financed and privately financed IVF-treatments. All interviews were performed by telephone and analyzed using thematic content analysis. Five main categories emerged from 27 sub-categories. Results In total, 18 interviews were performed with 22 individuals, as either a couple (n = 16) or separately (n = 6). Participants had different views on what a cryopreserved embryo is. Some participants addressed cryopreserved embryos as ‘a lump of cells’, and some in terms of their ‘unborn child’. Conditions for donation of cryopreserved embryos for cell-based treatment in PD were: not losing control of what is happening to the embryo, that donating must be voluntary and based on informed consent with time for reflection, that reimbursement, equality and transparency. Conclusions Using cryopreserved embryos to treat PD is associated with fundamental ethical and practical issues. This study shows that IVF couples with left-over embryos may be supportive but there is a need for future research to assess people’s views on using cryopreserved embryos for cell-based treatment in PD on a more aggregated level.
Objective To quantify preferences for preventive therapies for rheumatoid arthritis (RA) across three countries. Methods A web-based survey including a discrete choice experiment was administered to adults recruited via survey panels in the UK, Germany and Romania. Participants were asked to assume they were experiencing arthralgia and had a 60% chance of developing RA in the next 2 years and completed 15 choices between no treatment and two hypothetical preventive treatments. Treatments were defined by six attributes (effectiveness, risks and frequency/route of administration) with varying levels. Participants also completed a choice task with fixed profiles reflecting subjective estimates of candidate preventive treatments. Latent class models (LCMs) were conducted and the relative importance of attributes, benefit-risk trade-offs and predicted treatment uptake was subsequently calculated. Results Completed surveys from 2959 participants were included in the analysis. Most participants preferred treatment over no treatment and valued treatment effectiveness to reduce risk more than other attributes. A five-class LCM best fitted the data. Country, perceived risk of RA, health literacy and numeracy predicted class membership probability. Overall, the maximum acceptable risk for a 40% reduction in the chance of getting RA (60% to 20%) was 21.7%, 19.1% and 2.2% for mild side effects, serious infection and serious side effects, respectively. Predicted uptake of profiles reflecting candidate prevention therapies differed across classes. Conclusion Effective preventive pharmacological treatments for RA were acceptable to most participants. The relative importance of treatment attributes and likely uptake of fixed treatment profiles were predicted by participant characteristics.
Treatments used for rheumatoid arthritis (RA) are under investigation for their efficacy to prevent RA in at risk groups. It is therefore important to understand treatment preferences of those at risk. We systematically reviewed quantitative preference studies of drugs to treat, or prevent RA, to inform the design of further studies and trials of RA prevention. Stated preference studies for RA treatment or prevention were identified through a search of five databases. Study characteristics and results were extracted, and the relative importance of different types of treatment attributes was compared across populations. Twenty three studies were included 20 of RA treatments (18 of patients; 2 of the general public) and 3 prevention studies with first-degree relatives (FDRs). Benefits, risks, administration method and cost (when included) were important determinants of treatment choice. A benefit was more important than a risk attribute in half of the studies of RA treatment that included a benefit attribute and 2/3 studies of RA prevention. There was variability in the relative importance of attributes across the few prevention studies. In studies with non-patient participants, attributes describing confidence in treatment effectiveness/safety were more important determinants of choice than in studies with patients. Most preference studies relating to RA are of treatments for established RA. Few studies examine preferences for treatments to prevent RA. Given intense research focus on RA prevention, additional preference studies in this context are needed. Variation in treatment preferences across different populations is not well understood and direct comparisons are needed.