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Objectives We studied discordance between health literacy of people with rheumatic and musculoskeletal diseases (RMDs) and assessment of health literacy by their treating health professionals, and explored whether discordance is associated with the patients’ socioeconomic background. Methods Patients with RA, spondyloarthritis (SpA) or gout from three Dutch outpatient rheumatology clinics completed the nine-domain Health Literacy Questionnaire (HLQ). Treating health professionals assessed their patients on each HLQ domain. Discordance per domain was defined as a ≥2-point difference on a 0–10 scale (except if both scores were below three or above seven), leading to three categories: ‘negative discordance’ (i.e. professional scored lower), ‘probably the same’ or ‘positive discordance’ (i.e. professional scored higher). We used multivariable multilevel multinomial regression models with patients clustered by health professionals to test associations with socioeconomic factors (age, gender, education level, migration background, employment, disability for work, living alone). Results We observed considerable discordance (21–40% of patients) across HLQ domains. Most discordance occurred for ‘Critically appraising information’ (40.5%, domain 5). Comparatively, positive discordance occurred more frequently. Negative discordance was more frequently and strongly associated with socioeconomic factors, specifically lower education level and non-Western migration background (for five HLQ domains). Associations between socioeconomic factors and positive discordance were less consistent. Conclusion Frequent discordance between patients’ scores and professionals’ estimations indicates there may be hidden challenges in communication and care, which differ between socioeconomic groups. Successfully addressing patients’ health literacy needs cannot solely depend on health professionals’ estimations but will require measurement and dialogue.

Background: In a health insurance system based on managed competition, such as in the Netherlands, it is important that all citizens can make well-informed decisions on which policy fits their needs and preferences best. However, partly due to the large variety of health insurance policies, there are indications that a significant group of citizens do not make rational decisions when choosing a policy. Objective: This study aimed to provide more insight into (1) how important it is for citizens in the Netherlands to choose a health insurance policy and (2) how easy it is for them to comprehend the information they receive. Methods: Data were collected by sending a survey to members of the Nivel Dutch Health Care Consumer Panel in February 2017. The response rate was 44% ( N = 659). Key Results: Our results indicate that citizens in the Netherlands acknowledge the importance of choosing a health insurance policy, but they also point out that it is difficult to comprehend health insurance information. Conclusion: Our findings suggest that a section of the citizens do not have the appropriate skills to decide which insurance policy best fits their needs and preferences. Having better insight into their level of health insurance literacy is an important step in the process of evaluating the extent to which citizens can fulfill their role in the health insurance system. Our results suggest that it is important to better tailor information on health insurances to the specific needs and skills of the individual. By doing this, citizens will be better supported in making well-informed decisions regarding health insurance policies, which should have a positive effect on the functioning of the Dutch health insurance system. [ HLRP: Health Literacy Research and Practice . 2021;5(4):e287–e294.] Plain Language Summary: The number of health insurance policy options to choose from is extensive in the Netherlands. This study explored to what extent citizens in the Netherlands find it important to choose a health insurance policy, and to what extent they comprehend the information they receive. The data were collected in 2017 using the Nivel Dutch Health Care Consumer Panel.

Background Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. Methods Data were collected from projects funded by a 4-year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co-deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self-perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. Results The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self-perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. Conclusions This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.

BACKGROUND: Medication self-management is important for patients who are controlling diabetes. Achieving medication self-management goals, may depend on treatment complexity and patients' capacities such as health literacy, knowledge and attitude.OBJECTIVES: The aims of this study were to explore how patients with diabetes self-manage their medications, how patients seek support when experiencing problems and how primary healthcare providers identify patients' medication related problems and provide support.METHODS: Semi-structured interviews were conducted among patients with diabetes receiving primary care and with their primary healthcare providers - GPs, nurses, pharmacists and technicians - between January and June 2017. A purposive sampling strategy was used to identify and select participants. An interview guide based on the Cycle of Complexity model was developed. Interviews were audiotaped and transcribed verbatim. Transcripts were coded with a combination of deductive and inductive codes. A thematic analysis was performed to identify categories and themes in the data. Findings were compared with the Cycle of Complexity model.RESULTS: Twelve patients and 27 healthcare providers were included in the study. From the transcripts 95 codes, 6 categories and 2 major themes were extracted. Patients used practical solutions and gaining knowledge to manage their medication. Their problems were often related to stress and concerns about using medications. A trusted relationship with the healthcare provider was essential for patients to share problems and ask for support. Informal support was sought from family and peer-patients. Healthcare providers perceive problem identification as challenging. They relied on patients coming forward, computer notifications, clinical parameters and gut-feeling. Healthcare providers were able to offer appropriate support if a medication management problem was known.CONCLUSION: Patients are confident of finding their way to manage their medications. However, sharing problems with healthcare providers requires a trusted relationship. This is acknowledged by both patients and healthcare providers.

Background During the coronavirus disease 2019 (COVID-19) pandemic, people have been confronted with a large amount of information about the virus and the governmental measures against its spreading. However, more than a quarter of individuals have limited health literacy (HL), meaning that they have difficulty finding, understanding, and applying health information. The purpose of this interview study was to investigate how individuals with limited HL acquire information about COVID-19 and governmental measures, what difficulties they experience in understanding and applying it, and what may be needed to overcome these difficulties. We also addressed other problems that they might face as a result of the pandemic. Using our findings, we aimed to make recommendations on the possible role of primary care in informing and supporting patients with limited HL during the pandemic. Methods Between June and October 2020, 28 individuals with limited HL were interviewed by phone (age range 20–84). The interviews were semi-structured and focused on the first months of the pandemic in the Netherlands (March/April/May 2020). Results The participants generally found COVID-19-related information abundant and complicated, and sometimes contradictory. Information provision by their own health care professionals was highly appreciated, especially in the context of chronic illnesses. General health care problems resulting from COVID-19 measures were postponement of regular care and difficulty with digital contacts. Conclusions Individuals with limited HL may benefit from provision of COVID-19-related information and support by their own health care providers. This applies in particular to patients with chronic illnesses. Primary care professionals are in the ideal position to take this role.

Background: In the Netherlands, new legislation on organ donation was implemented, based on a "opt-out" consent system, which means that all adults are presumed to consent for organ donation, unless they actively register their decision not to donate. A public information campaign preceded the law change. In the Netherlands, 29% of the population has limited health literacy (LHL). The aim of the study was to gain insight in the information needs of Dutch citizens with LHL regarding organ donation and the new legislation, as well as in their preferred information channels. Methods: A qualitative study was performed; 30 people participated in four focus groups and six individual interviews. Transcripts were coded, interviews were thematically analysed. Results: People with LHL need specific information to make an informed decision on organ donation. Relevant topics: 1) choice options, 2) eligibility, 3) role of partner and/or family, 4) impact on quality of care, and 5) process of organ donation. Information should be easy to understand. Conclusion: Current standard materials are too difficult and abstract. People with LHL require personal support to tailor general information to their personal situation, and practical help to actually register their choice. Suggestions on how to improve information is provided.

Introduction Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in-depth understanding of researchers' and YPCC's perspectives on meaningful impact. Methods We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., 'YPCC acquire new knowledge and skills') based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. Results Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. Conclusion The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. Patient or Public Contribution An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC.

Objectives Self-management of chronic diseases is rather complex, especially for patients with limited health literacy. In this review, we aim to disentangle the specific difficulties patients with limited health literacy face in relation to self-management and their associated needs with respect to self-management support. Methods We performed a literature search in five databases. We used a broad definition of health literacy and self-management was categorized into four types of activities: medical management, changing lifestyle, communicating and navigating through the health care system and coping. Included reviews described the relationship between health literacy and different domains of self-management and were published after 2010. Results A total of 28 reviews were included. Some clear difficulties of patients with limited health literacy emerged, predominantly in the area of medical management (especially adherence), communication and knowledge. Other associations between health literacy and self-management were inconclusive. Barriers from the patients’ perspective described mainly medical management and the communication and navigation of the health care system. Discussion Patients with limited health literacy experience difficulties with specific domains of self-management. For a better understanding of the relationship between health literacy and self-management, a broader conceptualization of health literacy is warranted, including both cognitive and behavioural aspects.

Objective To identify and describe health literacy profiles of patients with rheumatic diseases and explore whether the identified health literacy profiles can be generalized to a broader rheumatology context. Methods Patients with rheumatoid arthritis, spondyloarthritis, and gout from 3 hospitals in different regions in The Netherlands completed the Health Literacy Questionnaire (HLQ). Hierarchical cluster analysis was used to identify patients' health literacy profiles based on 9 HLQ domains. A multinomial regression model with the identified health literacy profiles as the dependent variable was fitted to assess whether patients with a given disease type or attending a given hospital were more likely to belong to a specific profile. Results Among 895 participating patients, the lowest mean HLQ domain scores (indicating most difficulty) were found for "critical appraisal," "navigating the health system," and "finding good health information." The 10 identified profiles revealed substantial diversity in combinations of strengths and weaknesses. While 42% of patients scored moderate to high on all 9 domains (profiles 1 and 3), another 42% of patients (profiles 2, 4, 5, and 6) clearly struggled with 1 or several aspects of health literacy. Notably, 16% (profiles 7-10) exhibited difficulty across a majority of health literacy domains. The probability of belonging to one of the profiles was independent of the hospital where the patient was treated or the type of rheumatic disease. Conclusion Ten distinct health literacy profiles were identified among patients with rheumatic diseases, independent of disease type and treating hospital. These profiles can be used to facilitate the development of health literacy interventions in rheumatology.

As health literacy (HL) is hypothesized to develop throughout life, enhancement during childhood will improve HL and health during life. There are few valid, age-appropriate tools to assess children’s HL. The German-language European Health Literacy Survey Questionnaire Adapted for Children (HLS-Child-Q15-DE) is a self-report questionnaire adapted from the adult European Health Literacy Survey Questionnaire. This study aims to translate the HLS-Child-Q15 to Dutch and explore the sample’s HL distribution. The HLS-Child-Q15-DE was translated following WHO guidelines and administered digitally to 209 Dutch schoolchildren (eight-to-eleven-year-olds). Its psychometric properties were assessed and the sample’s HL distribution was explored by demographic characteristics. The HLS-Child-Q15-NL had high internal consistency (α = 0.860) and moderate to strong item-total correlations (mean = 0.499). For 6 of the 15 items, &gt, 10% of participants answered “do not know”, indicating comprehension problems. Higher HL scores were observed for ten-to-eleven-year-olds (compared with eight-to-nine-year-olds, p = 0.021) and fourth-grade students (compared with third-grade, p = 0.019). This supports the idea that HL evolves throughout life and the importance of schools in this process. With the HLS-Child-Q15-NL, a Dutch measurement instrument of children’s HL is available, although it needs further tailoring to the target group. More research is needed to decrease comprehension problems and to investigate retest reliability and construct validity.

Background In 2020, a new law on organ donation will come into force in the Netherlands. This law requires people to actively register their choice whether or not to be an organ donor after death. In this opt-out system, people who do not register themselves are automatically considered to be a donor. To inform the general public, the Dutch ministry of Health launched a communication campaign to inform the general audience. However, people with limited health literacy - 1 in three Dutch adults - have difficulties understanding health related information. Therefore, a study was performed to determine the appropriate information content and communication channels to better address the knowledge needs of this specific target group. Methods The study was done through (a) desk research and (b) 6 individual interviews and 4 focus groups with people with limited health literacy (total 30 people). The respondents were recruited through organisations that focus on specific populations with limited health literacy (limited reading and writing skills, minor intellectual disabilities, migrants). Results Most respondents had not heard about the new law on organ donation. Those who were aware of the law did not know what the law entails and what was required of them. The content of the information currently used were generally considered too difficult and abstract and did not give the respondents enough input on which to base a decision whether or not to be an organ donor. People with limited health literacy can mention specific topics on which they want information. Furthermore, they want practical help in registering their choice through the website. As information channels they prefer simple films and narratives of other people. Conclusions People with limited health literacy need more specific information on organ donation and what the new law entails. They have a preference for films and narratives. Furthermore, they need practical help in registering their choice. Key messages Current information on the new Dutch law on organ donation is too difficult and does not address the knowledge needs of people with limited health literacy. Films and narratives are preferred information channels of people with limited health literacy.

BACKGROUND Decision aids (DAs) may be used to facilitate an autonomous, informed decision to cease smoking and promote the uptake of evidence-based cessation assistance (ie, behavioral support, nicotine replacement therapy, or prescription medication). However, knowledge is lacking regarding their effective elements and (cost-)effectiveness. OBJECTIVE We describe the development process of an online DA (called “VISOR”) that helps smokers to choose evidence-based cessation assistance. Additionally, we provide a description of the protocol of an ongoing randomized controlled trial in which the DA containing an explicit value clarification method (VCM) and tailored advice is compared with a DA without an explicit VCM and tailored advice. METHODS The development of “VISOR” was based on the International Patient Decision Aid Standards guidelines. Viewpoints of end users (collected through 20 interviews with smokers) and clinical and scientific experts (assessed using 2 Delphi studies with 24 scientists and 38 clinicians) were assessed regarding cessation tool decision making and preferred DA content. These findings, together with principles from the Self-Determination Theory, served as input for the development of the online DA. A first DA prototype was alpha-tested in September 2019 and beta-tested for usability in December 2019; feedback was incorporated and resulted in a final version. The final DA contains (1) an information section, (2) an optional knowledge quiz, (3) a brief smoking assessment, (4) intuitive decision, (5) intermediate advice, (6) an explicit VCM, (7) tailored advice, and (8) access information. A randomized controlled trial is currently being conducted to assess the DA’s (cost-)effectiveness compared to a DA that does not include the explicit VCM and the tailored advice; specifically, the DA’s effect on smoking abstinence, uptake of evidence-based cessation assistance, smoking abstinence mediated through uptake of evidence-based cessation assistance, and decisional conflict are investigated. Participants are randomly allocated to receive access to 1 of the 2 DAs and are asked to complete 5 questionnaires (including the baseline questionnaire) over a period of 12 months. To evaluate the effects of the DA on the outcome measures, logistic and linear regression analyses as well as mediation analyses will be carried out. An economic evaluation will be performed to assess the cost-effectiveness. RESULTS Data regarding the effect of the VISOR DA are currently being collected, and data collection is expected to be concluded in 2021. CONCLUSIONS By making use of an iterative process that integrated different stakeholders’ perspectives (including end users), we were able to systematically design an evidence-based DA. The study will contribute to the current knowledge regarding smoking cessation DA application, the added value of explicit VCMs, and the effect of behavioral and informed decision-making outcomes. CLINICALTRIAL Netherlands Trial Register NL8270; https://www.trialregister.nl/trial/8270 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/21772

This report focuses on the development of health literacy in two European countries, Denmark and the Netherlands. Denmark is part of the Nordic region, while the Netherlands is situated in the Western part of Europe. The report includes examples on Danish and Dutch health literacy research and lessons learned from practice. In Denmark, supported by health literacy research, health literacy developments have been advanced within some areas of practice. Health literacy advocacy initiatives promoted by the Danish Health Literacy Network and the Danish Society of Public Health provide promising perspectives for the future of health literacy in Denmark. In the Netherlands, the Dutch Health Literacy Alliance, researchers, and other relevant stakeholders are actively integrating health literacy in research and practice - both clinically and in communities. The vibrant Dutch health literacy community advocates for further national health literacy efforts to achieve governmental support.

Medication beliefs are likely contingent on aspects of health literacy: knowledge, motivation, and competences to access, understand, appraise, and apply health information. An association between medication beliefs and health literacy is expected as they both influence self-management. The aim of this study was to examine the association between health literacy and the beliefs about overuse and harmful effects of medication and to examine modifying effects of age, gender, and number of medications on this association.The data were collected using the online "Medication panel" of the Dutch Institute for Rational Use of Medicine. A linear regression model was used to examine the association between health literacy and beliefs about medication and the modifying effects of age, gender, and number of medications on this association.Respondents with a lower level of health literacy had more concerns about overuse (β adj.= -.174, p.001) and harmful (β adj.= -.189, p.001) effects of medication. This study found no modifying effects.A lower health literacy level is associated with more concerns about the overuse and harmful effects of medication. The results of this study suggest that extra attention should be given to persons with low health literacy level by healthcare professionals, to decrease their concerns about overuse and harmful effects, and improve adherence to self-management behavior.

Background In the past five years, two inventory studies have been performed in which health literacy policies throughout Europe were described and analyzed: the ‘Study on sound evidence for a better understanding of health literacy in the European Union’(HEALIT4EU, 2015) and the recent HEN-synthesis report on the evidence on existing policies and linked activities and their effectiveness for improving health literacy (2018). In this presentation, data from these two studies will be compared to identify current developments regarding health literacy policy. Methods The descriptive data of both studies were, amongst others, compared with respect to the number of countries with policies or activities regarding health literacy, the geographical distribution over Europe, the content of the policies and level of implementation. Results More countries have developed policies and activities in the domain of health literacy, or are currently in the process of doing so. However, gaps remain in the geographical distribution of policy, and evidence on the effectiveness of policies and activities is still marginal. Conclusions Health literacy is more prominent on the European policy agenda. Rigorous evaluation is needed to demonstrate possible benefits of the policies for individuals, communities and society as a whole.

Background Delivery of rheumatological care is suggested to be compromised by patient health literacy. Prevalence of problematic health literacy in the Netherlands is estimated to be as high as 36%. “Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (Nutbeam, 1998). A deeper understanding of diverse health literacy profiles of patients attending rheumatology clinics could facilitate development of interventions tailored to patients’ needs, in order to improve health outcomes and reduce inequities. Objectives To identify health literacy strengths and weaknesses among patients with Spondyloarthritis (SpA) and Rheumatoid Arthritis (RA) attending a rheumatology clinic, and identify typical ‘health literacy profiles’ based on these strengths and weaknesses. Methods Consecutive RA and SpA patients attending the outpatient clinic at Maastricht UMC+, the Netherlands, were invited to participate. Health literacy was assessed using the Health Literacy Questionnaire (HLQ), which includes nine dimensions (Figure 1). Socio-demographics and health-related characteristics were also collected. Hierarchical cluster analysis following Ward’s method identified clusters based on HLQ scale scores. This method groups subjects into a predefined number of clusters, based on smallest differences to the mean of all scales, creating minimal variance within each cluster, and maximum variance between clusters. Three researchers jointly examined twenty cluster solutions for meaningfulness by interpreting HLQ scales and patient characteristics. Meaningful clusters are translated into health literacy profiles using HLQ patterns and demographic data. A patient representative confirmed the identified profiles. Results In total, 133 patients with RA and 106 with SpA completed the questionnaire. Of these, 61% (n=146) were female, mean age was 61.6 (±13.3), 27% (n=65) lived alone, 11% (n=26) did not speak Dutch at home, 28% (n=68) were employed, and 22% and 50% had received low and medium education, respectively. Figure 1 displays identified health literacy profiles and scale scores, with greener values representing strengths and red scores representing weaknesses. Overall, the pattern indicates RA and SpA patients have similar profiles, but some represent a clear majority of SpA or RA patients and could be considered disease-specific. For example, cluster 10 includes patients who typically feel comfortable in their relationship with their doctor (scales 1 and 6), and are rather confident in managing their health and getting the information they need (scale 3 and 7). However, they struggle in understanding health information (scale 9), and lack the social support needed to make health decisions and maintain good health (scale 4). This profile appeared restricted to RA patients. Conclusion This study identified potential typical health literacy profiles in patients with inflammatory arthritis in our clinic. Profiles reflected distinctive strengths and weaknesses on the nine health literacy dimensions. Some profiles appeared to be condition-specific, which warrants further investigation. Identified profiles will feed into co-design workshops with patients, professionals and other stakeholders, in order to develop interventions to tailor the care to patients’ needs. References [1] Nutbeam D. (1998). Health promotion glossary. Health Promotion International, 13, 349–364. Disclosure of Interests Mark Bakker: None declared, Polina Putrik: None declared, Jany Rademakers: None declared, Mart van de Laar Grant/research support from: AbbVie, Eli Lilly, Janssen-Cilag, Merck Inc, Pfizer Inc, Sanofi Genzyme, Speakers bureau: Eli Lilly, Pfizer Inc, Harald Vonkeman: None declared, Marc Kok: None declared, Hanneke Voorneveld: None declared, Sofia Ramiro Grant/research support from: MSD, Consultant for: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Speakers bureau: AbbVie, Lilly, MSD, Novartis, Pfizer, Sanofi, Maarten de Wit: None declared, Richard Osborne: None declared, Roy Batterham: None declared, Rachelle Buchbinder: None declared, Annelies Boonen: None declared

Background:Health literacy is increasingly recognised as a critical determinant of health. While care should be tailored to the health literacy needs of each patient [1], research in primary care shows that physicians often under- or overestimate their patients’ health literacy, with socioeconomic factors playing a role [2]. Evidence in a rheumatology setting is scarce.Objectives:-To investigate discordance between health literacy of patients with rheumatic and musculoskeletal diseases (RMDs) and assessment by their treating health professional, across the nine domains of the Health Literacy Questionnaire (HLQ).-To explore whether discordance is associated with the patient’s socioeconomic background.Methods:Patients with rheumatoid arthritis (RA), spondyloarthritis (SpA), or gout from three Dutch outpatient rheumatology clinics completed the HLQ [3]. The treating health professional (rheumatologist, physician assistant, nurse (practitioner) or resident) assessed their patient’s level for each HLQ domain, or answered “I don’t know”. Discordance per domain was calculated as the patient’s score subtracted from the professional’s score (both on a 0-10 scale). Discordance was defined as a ≥2-point difference in either direction. Adjusted multilevel multinomial regression models (ref. = no discordance) with patients clustered by health professionals were computed to test the role of socioeconomic factors (age, gender, education level, immigration background, living alone and employment status) in negative (i.e. professional scored lower) and positive (i.e. professional scored higher) discordance.Results:Of 778 patients included, 41% had RA, 34% had SpA, and 25% had gout. We observed considerable discordance across all HLQ domains (Table 1). Professionals answered “I don’t know” most often for “Having social support for health” (19.4%, domain 4). Most discordance occurred for “Critically appraising information” (42.1%, domain 5). For all HLQ domains except “Having social support for health” (domain 4), discordance was associated with socioeconomic factors. In patients with a non-Western immigration background, professionals were likely to assign lower scores than patients’ HLQ scores in six domains. Education level was an important driver of discordance in seven domains, with the direction of the association being domain-dependent. Other factors associated with discordance in multiple domains were type of rheumatic disease, comorbidities, mastery, how well the professional knew the patient, type of professional, and disease impact.Table 1.Discordance per HLQ domain (n=778)HLQ domainProfessional scored lowerNo discordanceProfessional scored higherProfessional did not known (%)1. Healthcare provider support128 (16)514 (66)126 (16)10 (1)2. Having sufficient information100 (13)528 (68)143 (18)7 (1)3. Actively managing health95 (12)461 (59)208 (27)14 (2)4. Having social support for health55 (7)397 (51)175 (22)151 (19)5. Critically appraising information78 (10)448 (58)250 (32)2 (0)6. Actively engaging with providers205 (26)500 (64)70 (9)3 (0)7. Navigating the health system115 (15)544 (70)107 (14)12 (2)8. Finding health information163 (21)492 (63)98 (13)25 (3)9. Understanding health information145 (19)511 (66)110 (14)12 (2)Conclusion:Considerable discordance between patients’ health literacy and their treating health professionals’ assessment exists across health literacy domains. In eight out of nine domains, discordance was associated with the patient’s socioeconomic background, particularly education and immigration background. Understanding and addressing the reasons for discordance between patient-reported and professional-perceived health literacy has potential to improve responsiveness to patients’ needs, promote better communication and ultimately improve care outcomes.References:[1]Bakker et al., Arthrit Care Res (2021)[2]Storms et al., BMJ Open (2019)[3]Osborne et al., BMC Public Health (2013)Disclosure of Interests:None declared

Background:The rapid global spread of COVID-19 required swift action to provide people with rheumatic and musculoskeletal diseases (RMDs) with reliable information. Important issues included the risk of infection and severe illness, (continued) use of medication, temporary closure of clinics, and organization of (semi-) virtual care. People with limited health literacy are a particularly vulnerable group that might have difficulty accessing, understanding, and applying health information.Objectives:To evaluate (a) key aspects of crisis communication and (b) explicit consideration of people’s health literacy needs in communication to people with RMDs during the first wave of COVID-19 in the Netherlands.Methods:We conducted an explorative qualitative study including seven interviews in May and June 2020 with representatives of organisations (a mixed regional/academic hospital, the association for RMD professionals and two patient organisations) responsible for information provision to people with RMDs in the Netherlands. Interviewees were asked about preparedness (1) and strategy (2) for crisis communication, and content (3) and reach (4) of communication, considering principles of good crisis communication and health literacy. In addition, through systematic screening of websites, social media and emails, we identified and analysed 13 written communications provided to people with RMDs by these organisations during the first three months of the COVID-19 pandemic. We assessed comprehensibility and applicability with the Dutch adapted version of the Patient Education Materials Assessment tool (PEMAT), the outcome being a percentage of adherence to 24 criteria. We assessed difficulty level using an online assessment application (Figure 1), with Common European Framework of Reference for Languages (CEFR) level B1 being the highest acceptable level.Figure 1.Example of textual assessment using the application. Note: Dutch-language text was used for analysis; the English translation is provided as a reference only and might be of different difficulty.Results:While admittedly being underprepared, respondents generally perceived their crisis communication as adequate. They quickly adapted to people’s needs and changing circumstances and attempted to adapt written and verbal communication to people with limited health literacy. Respondents reported challenges related to the scientific uncertainty, lack of reach, difficulty simplifying information, and being unsure if their communication approach was adequate. Textual assessment showed great variation in applicability (range 60-100%) and comprehensibility (range 58-100%) of these texts, and 69% of communications were more difficult than B1-level. Considering principles of crisis communication and health literacy, we propose several lessons to be learned for future crises (Table 1 Table 1.Recommendations for improvement of crisis communicationPreparedness:Use current experience to establish a future crisis communication planTrain staff and management in crisis communication and health literate communicationStrategy:Collaborate with relevant organisations to ensure consistency in messagesInform people early and frequentlyRemain transparent about uncertaintyContent:Adapt information to different people’s needs, considering e.g. age, cultural backgroundCheck difficulty level of written information (aim at B1) and adapt accordinglyAsk your audience for feedbackMake sure information is directly applicable in practiceCombat fake news through acknowledgement and counterargumentsReach:Use multiple channelsUse diverse outreach strategies to cater to a diverse audienceOverall:Consider people’s health literacy throughout).Conclusion:The rheumatology organisations mostly adhered to principles of crisis communication, and made efforts to adapt information to their audience’s needs, including health literacy needs. Nevertheless, important recommendations were drawn which are potentially also relevant for other clinical fields.Acknowledgements:We thank Mr. Tigran Spaan for providing free access to the online language assessment application.Disclosure of Interests:None declared.

Background Decision aids (DAs) may be used to facilitate an autonomous, informed decision to cease smoking and promote the uptake of evidence-based cessation assistance (ie, behavioral support, nicotine replacement therapy, or prescription medication). However, knowledge is lacking regarding their effective elements and (cost-)effectiveness. Objective We describe the development process of an online DA (called “VISOR”) that helps smokers to choose evidence-based cessation assistance. Additionally, we provide a description of the protocol of an ongoing randomized controlled trial in which the DA containing an explicit value clarification method (VCM) and tailored advice is compared with a DA without an explicit VCM and tailored advice. Methods The development of “VISOR” was based on the International Patient Decision Aid Standards guidelines. Viewpoints of end users (collected through 20 interviews with smokers) and clinical and scientific experts (assessed using 2 Delphi studies with 24 scientists and 38 clinicians) were assessed regarding cessation tool decision making and preferred DA content. These findings, together with principles from the Self-Determination Theory, served as input for the development of the online DA. A first DA prototype was alpha-tested in September 2019 and beta-tested for usability in December 2019; feedback was incorporated and resulted in a final version. The final DA contains (1) an information section, (2) an optional knowledge quiz, (3) a brief smoking assessment, (4) intuitive decision, (5) intermediate advice, (6) an explicit VCM, (7) tailored advice, and (8) access information. A randomized controlled trial is currently being conducted to assess the DA’s (cost-)effectiveness compared to a DA that does not include the explicit VCM and the tailored advice; specifically, the DA’s effect on smoking abstinence, uptake of evidence-based cessation assistance, smoking abstinence mediated through uptake of evidence-based cessation assistance, and decisional conflict are investigated. Participants are randomly allocated to receive access to 1 of the 2 DAs and are asked to complete 5 questionnaires (including the baseline questionnaire) over a period of 12 months. To evaluate the effects of the DA on the outcome measures, logistic and linear regression analyses as well as mediation analyses will be carried out. An economic evaluation will be performed to assess the cost-effectiveness. Results Data regarding the effect of the VISOR DA are currently being collected, and data collection is expected to be concluded in 2021. Conclusions By making use of an iterative process that integrated different stakeholders’ perspectives (including end users), we were able to systematically design an evidence-based DA. The study will contribute to the current knowledge regarding smoking cessation DA application, the added value of explicit VCMs, and the effect of behavioral and informed decision-making outcomes. Trial Registration Netherlands Trial Register NL8270; https://www.trialregister.nl/trial/8270 International Registered Report Identifier (IRRID) DERR1-10.2196/21772

Background:The prevalence of limited health literacy (i.e. cognitive and social resources of individuals to access, understand and apply health information to promote and maintain good health) in the Netherlands is estimated to be over 36% [1]. Access to and outcomes of rheumatological care may be compromised by limited patient health literacy, yet little is known about how to address this, thus action is required. As influencing individual patients’ health literacy in the rheumatology context is often unrealistic, it is paramount for the health system to be tailored to the health literacy needs of its patients. The OPtimising HEalth LIteracy and Access (Ophelia) process offers a method to inform system change [2].Objectives:Following the Ophelia approach:a. Identify health literacy profiles reflecting strengths and weaknesses of outpatients with RA, SpA and gout.b. Use the health literacy profiles to facilitate discussions on challenges for patients and professionals in rheumatological care and identify possible solutions the health system could offer to address these challenges.Methods:Patients with RA, SpA and gout attending outpatient clinics in three centres in the Netherlands completed the Health Literacy Questionnaire (HLQ) and questions on socio-demographic and health-related characteristics. Hierarchical cluster analysis using Ward’s method identified clusters based on the nine HLQ domains. Three researchers jointly examined 24 cluster solutions for meaningfulness by interpreting HLQ domain scores and patient characteristics. Meaningful clusters were translated into health literacy profiles using HLQ patterns and demographic data. A patient research partner confirmed the identified profiles. Patient vignettes were designed by combining cluster analyses results with qualitative patient interviews. The vignettes were used in two two-hour co-design workshops with rheumatologists and nurses to discuss their perspective on health literacy-related challenges for patients and professionals, and generate ideas on how to address these challenges.Results:In total, 895 patients participated: 49% female, mean age 61 years (±13.0), 25% lived alone, 18% had a migrant background, 6.6% did not speak Dutch at home and 51% had low levels of education. Figure 1 shows a heat map of identified health literacy profiles, displaying the score distribution per profile across nine health literacy domains. Figure 2 shows an excerpt of a patient vignette, describing challenges for a patient with profile number 9. The workshops were attended by 7 and 14 nurses and rheumatologists. Proposed solutions included health literacy communication training for professionals, developing and improving (visual) patient information materials, peer support for patients through patient associations or group consultations, a clear referral system for patients who need additional guidance by a nurse, social worker, lifestyle coach, pharmacist or family doctor, and more time with rheumatology nurses for target populations. Moreover, several system adaptations to the clinic, such as a central desk for all patient appointments, were proposed.Conclusion:This study identified several distinct health literacy profiles of patients with rheumatic conditions. Engaging with health professionals in co-design workshops led to numerous bottom-up ideas to improve care. Next steps include co-design workshops with patients, followed by prioritising and testing proposed interventions.References:[1]Heijmans M. et al. Health Literacy in the Netherlands. Utrecht: Nivel 2018[2]Batterham R. et al. BMC Public Health 2014, 14:694Disclosure of Interests:Mark Bakker: None declared, Polina Putrik: None declared, Jany Rademakers Speakers bureau: In March 2017, Prof. Dr. Rademakers was invited to speak about health literacy at the “Heuvellanddagen” Conference, hosted by Janssen-Cilag., Mart van de Laar Consultant of: Sanofi Genzyme, Speakers bureau: Sanofi Genzyme, Harald Vonkeman: None declared, Marc R Kok Grant/research support from: BMS and Novartis, Consultant of: Novartis and Galapagos, Hanneke Voorneveld: None declared, Sofia Ramiro Grant/research support from: MSD, Consultant of: Abbvie, Lilly, Novartis, Sanofi Genzyme, Speakers bureau: Lilly, MSD, Novartis, Maarten de Wit Grant/research support from: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Consultant of: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Speakers bureau: Dr. de Wit reports personal fees from Ely Lilly, 2019, personal fees from Celgene, 2019, personal fees from Pfizer, 2019, personal fees from Janssen-Cilag, 2017, outside the submitted work., Richard Osborne Consultant of: Prof. Osborne is a paid consultant for pharma in the field of influenza and related infectious diseases., Roy Batterham: None declared, Rachelle Buchbinder: None declared, Annelies Boonen Grant/research support from: AbbVie, Consultant of: Galapagos, Lilly (all paid to the department)

Objective: To characterize patients interested in support by a patient coach to guide them in medical specialist consultations.Methods: We compared 76 patients interested in a patient coach with 381 patients without such an interest, using a representative panel of patients with a chronic disease in the Netherlands. Independent variables were demographic factors, socio-economic status, perceived efficacy in patient-provider interaction, communication barriers, health literacy, (duration and type of) disease(s) and activation level.Results: In univariate analyses, patients who are interested in a coach were significantly older, had lower health literacy skills and less self-efficacy and, overall, experienced more communication barriers (>4), than patients without such interest (1-2 barriers). Multivariate analyses indicated three communications barriers as determinants of patient interest in a coach: feeling tense, uncertainty about own understanding, and believing that a certain topic is not part of a healthcare providers' task.Conclusion: Patients interested in a coach perceive specific barriers in communicating with their medical specialist. In addition, patients who are > = 65 years, have lower health literacy and low self-efficacy may have interest in a coach.Practice implications: Characterizing patients interested in a patient coach facilitates identification of those who could benefit from such a coach in clinical practice. (C) 2019 Elsevier B.V. All rights reserved.

Background In the last decade, the attention for health literacy has increased in the European Union. This is due to three main reasons. First, reviews have shown that inadequate health literacy is associated with worse health outcomes, higher health care use and expenditure. Second, in all European countries the population is aging and the number of chronically ill people is rising. Improving health literacy in this group can offer greater opportunities to take an active part in society, be independent and improve quality of life. Third, since most research on health literacy has been conducted outside Europe and relatively little is known about the development of health literacy interventions and its effects on outcome measures in European countries. The aim of this systematic review was to assess the evidence on the effectiveness of health literacy interventions in the European Union published between 1995 and 2018. Methods Searches have been performed in Medline, PubMed, EMBASE, CINAHL, Cochrane library, PsychINFO, ERIC, Web of Science and SCOPUS for publications on health literacy intervention studies in European Union countries. Studies were included if the research was conducted in one or more Member States of the European Union, the publication described an intervention study, the intervention was aimed at health literacy, the publication described an outcome measure related to health literacy and the publication was written in English, French or German. Results A total of 23 studies were included. Three types of interventions were identified; aimed at improving health literacy, tailored to different health literacy levels and aimed at improving health outcomes in general that differentiated in effects for people with different health literacy levels. Most interventions identified in the review focus on the functional level of health literacy or numeracy. The strength of evidence from the European health literacy intervention studies was low and there was a huge heterogeneity in study design, measurement tools and outcomes measured. Conclusions Promising interventions were tailored to the needs of patients, addressing functional, interactive and critical skills and use not difficult animated spoken text. Future research should focus on the development and assessment of such interventions and use stronger designs. Electronic supplementary material The online version of this article (10.1186/s12889-018-6331-7) contains supplementary material, which is available to authorized users.

Aim The aim of this round table is to provide an overview of important recent insights and developments in the domain of health literacy research and policy in Europe. The implications for research, policy and practice will be discussed with the audience. There will be five short presentations: 1. Quick scan of health literacy developments in Europe in the past five years. Jany Rademakers, PhD, Head research department Nivel, Utrecht, Professor Health literacy and patient participation, CAPHRI, Maastricht University, the Netherlands. 2. Health literacy in Childhood and Adolescence; main consortium findings. Orkan Okan, PhD., Senior researcher, project manager HLCA, University of Bielefeld, Germany. 3. From the Health Literacy Survey Europe (HLS-EU) to Measuring Population and Organizational Health Literacy (M-POHL). Jurgen M. Pelikan, PhD Professor em. sociology (University of Vienna), Director, Competence Center Health Promotion in Hospitals and Health Care, at Gesundheit Osterreich GmbH (Austrian Public Health Institute). 4. The development of the social movement of health literacy in Europe and beyond. Kristine Sorensen, PhD, Global Health Literacy Academy, Denmark. 5. Towards holistic health literacy policies in Europe; results of a recent WHO evidence synthesis. Gill Rowlands, PhD, Professor of General Practice, Newcastle University, UK . Key messages: Health literacy is an important public health asset. Health literacy policies should be targeted at different levels and areas of society.

Background Efforts to address health literacy should favour a system-based approach with the dual aim both of fostering the material conditions and creating a work culture inside health care organisations that makes it easier for people to use information. The Vienna Health Literate Organisation (V-HLO) self-assessment tool is a German-speaking questionnaire for quality managers of health care organisations. Its objective is to provide a diagnostic of the strengths and weaknesses of the organisation in terms of health literacy. Our goal was to translate and culturally adapt this questionnaire for the French-speaking part of Belgium. Methods We followed the Translation, Review, Adjudication, Pretesting, and Documentation (TRAPD) team model for cross-cultural translation of questionnaires. We used cognitive interviews with quality experts to pre-test the translation. Results Cognitive interviews allowed us to improve the translation by removing certain ambiguities, providing contextual clarifications or rephrasing some items in such a way as to render them more culturally appropriate. Local experts generally judged the tool to be relevant and applicable to their context. The insight gained with regard to their cognitive process when completing the V-HLO allowed us to identify possible barriers to the adoption of the tool (such as difficulties in considering staff literacy as a relevant target for the tool, fear of overwhelming staff, a feeling that some items fell outside the scope of health literacy and lack of attention for integration of services with primary care) and could contribute to the future development of the tool. Conclusion We translated and adapted the V-HLO self-assessment tool for French. The French version of the V-HLO will now be implemented in our local context to assess whether it can make it easier for people to deal with the complexities of health care organisations. Electronic supplementary material The online version of this article (10.1186/s12913-019-3955-y) contains supplementary material, which is available to authorized users.

Het beginsel van de individuele verantwoordelijkheid is bepalend geworden in de zorg. Patienten en clienten dragen zelf de verantwoordelijkheid om te kiezen voor hun behandelaar, met hem/haar mee te beslissen over de behandeling en ook nog eens zelf hun ziekte te managen, mocht het een chronische aandoening zijn.