Measurement of treatment burden in patients with multimorbidity in the Netherlands: translation and validation of the Multimorbidity Treatment Burden Questionnaire (NL-MTBQ).

BACKGROUND: Multimorbidity is a growing problem. The number and complexity of (non-)pharmaceutical treatments create a great burden for patients. Treatment burden refers to the perception of the weight of these treatments, and is associated with multimorbidity. Measurement of treatment burden is of great value for optimizing treatment and health-related outcomes. OBJECTIVE: We aim to translate and validate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for use in the Dutch population with multimorbidity and explore the level of treatment burden. METHODS: Translating the MTBQ into Dutch included forward-backward translation, piloting, and cognitive interviewing (n = 8). Psychometric properties of the questionnaire were assessed in a cross-sectional study of patients with multimorbidity recruited from a panel in the Netherlands (n = 959). We examined item properties, dimensionality, internal consistency reliability, and construct validity. The level of treatment burden in the population was assessed. RESULTS: The mean age among 959 participants with multimorbidity was 69.9 (17-96) years. Median global NL-MTBQ score was 3.85 (interquartile range 0-9.62), representing low treatment burden. Significant floor effects were found for all 13 items of the instrument. Factor analysis supported a single-factor structure. The NL-MTBQ had high internal consistency (α = 0.845), and provided good evidence on the construct validity of the scale. CONCLUSION: The Dutch version of the 13-item MTBQ is a single-structured, valid, and compact patient-reported outcome measure to assess treatment burden in primary care patients with multimorbidity. It could identify patients experiencing high treatment burden, with great potential to enhance shared decision-making and offer additional support.

Exploring discordance between Health Literacy Questionnaire scores of people with RMDs and assessment by treating health professionals.

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. VIDEO ABSTRACT: A video abstract of this article can be found at https://www.youtube.com/watch?v=ggnB1rATdQ4.

Information Needs of People With Limited Health Literacy Regarding a New "Opt-Out" Organ Donation System: A Qualitative Study in the Netherlands.

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.

Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition.

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.

'A basic understanding'; evaluation of a blended training programme for healthcare providers in hospital-based palliative care to improve communication with patients with limited health literacy.

BACKGROUND: The non-curative setting makes communication and shared decision-making in palliative care extremely demanding. This is even more so for patients with limited health literacy. So far, research in palliative care focusing on shared decision-making with patients with limited health literacy is lacking. Recent research from our team indicates that the assessment of these patients' understanding of their situation and the implementation of shared decision-making in palliative care, needs improvement. METHODS: To improve communication and decision-making, especially with patients with limited health literacy, we developed and evaluated a blended training programme for healthcare providers. The training programme comprised of an e-learning and a team training. The evaluation was performed by 1. conducting interviews (n = 15) focused on evaluating the whole programme and, 2. coding video-recorded outpatient consultations on the extent to which providers involved patients in decision-making before (n = 19) and after (n = 20) the intervention, using the 5-item OPTION coding instrument. RESULTS: The interviews showed that healthcare providers valued the skills they had learned during the e-learning and team training. Providers specifically valued the teach-back technique, learned to use simpler wording and felt better able to recognize patients with limited health literacy. Many providers reported a change in communication behaviour as a consequence of the training programme. Suggestions for improvement for both e-learning and training were, amongst others, a follow-up team training course and a new scenarios for the e-learning about discussing palliative care. For both the pre- and the post-measurement, involving patients in decision-making lies between a minimal and a moderate effort; differences were not significant. CONCLUSIONS: The e-learning and team training were valued positively by the healthcare providers. Adaptations to the e-learning have been made after evaluation. The e-learning has been implemented in several hospitals and medical education. To improve shared decision-making in practice a more sustained effort is needed.

The Vienna self-assessment questionnaire: a usable tool towards more health-literate hospitals? Explorative case studies in three hospitals in Belgium.

BACKGROUND: Strengthening the capacity of hospitals to take into account the level of health literacy of their public is a necessity to improve the quality of care. One way to develop adequate health literacy responsive policy and strategies in hospitals is the use of self-assessment tools to raise awareness, help prioritise action and mobilise stakeholders. The Vienna Health Literate Organisation (V-HLO) questionnaire, recently translated and adapted into French, is designed to meet this objective. In this study we have piloted the French version of the V-HLO (V-HLO-fr) tool in the main hospitals of Liège (Belgium) to explore its feasibility and gain a first insight into the strengths and weaknesses of the health literacy responsiveness of the participating hospitals. METHODS: We performed explorative case studies in three hospitals. Our mode of application of the V-HLO-fr was inspired by the 'RAND Appropriateness' method: first, individual members of an internal multidisciplinary panel filled out the questionnaire and then the results were discussed collectively in each hospital during a 'round table' meeting. The feasibility of the process was assessed by direct observation of the round tables and with semi-structured phone interviews. RESULTS: The V-HLO-fr tool was fully applied in the three targeted hospitals and the process seems to be acceptable, practicable and integrable. Strengths (e.g. the facilitation of patient navigation to the hospital) and weaknesses (e.g. the provision of easy to read, understand and act on health information materials) in terms of health literacy responsiveness have been highlighted. CONCLUSION: V-HLO-fr can be a suitable tool for a needs assessment that allows hospitals to create awareness and formulate targeted actions to further strengthen their health literacy responsiveness. Its mode of application, formalised by taking inspiration from the RAND method, could be further improved by paying more attention to recruiting and supporting participants. The V-HLO-fr and its added value in real-world projects should now be further tested in a larger number of hospitals.

Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis.

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.

Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.

BACKGROUND: The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so-called 'Patient and Public Involvement' (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact. METHODS: We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction. RESULTS: Twenty-three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. DISCUSSION AND CONCLUSION: Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.

Towards a comprehensive, person-centred assessment of health literacy: translation, cultural adaptation and psychometric test of the Dutch Health Literacy Questionnaire.

BACKGROUND: Many health literacy instruments focus on reading skills, numeracy and/or information processing aspects only. In the Netherlands, as in other countries, the need for a comprehensive, person-centred measure of health literacy was observed and consequently the decision was made to translate the Health Literacy Questionnaire (HLQ) into Dutch. The HLQ has nine health literacy domains covering people's experiences and skills. This research sought to translate, culturally adapt and psychometrically test the HLQ. METHODS: The translation and adaptation was done using a systematic approach with forward translation guided by item intents, blind back translation, and a consensus meeting with the developer. The Dutch version of the HLQ was applied in a sample of non-hospitalized, chronically ill patients. Descriptive statistics were generated to describe mean, standard deviation and floor and ceiling effects for all items. A Confirmatory Factor Analysis (CFA) model was fitted to the data. Scores on the nine domains of the HLQ were compared across demographic and illness characteristics as a form of known-groups validity. Psychometric analyses included Cronbach's alpha, item-rest and item-remainder correlations. RESULTS: Using CFA, the Dutch HLQ psychometric structure was found to strongly align with the hypothesised (original) nine independent domains of the English version. The nine scales were found to be highly reliable (all scales had alpha between 0.83 and 0.94). Six of the nine HLQ-scales had items that show ceiling-effects. There were no ceiling effects present at the scale level. Scores on the scales of the HLQ differed according to demographic and illness characteristics: people who were older, lower educated and living alone and patients with multiple chronic diseases generally scored lower. CONCLUSIONS: The Dutch version of the HLQ is a robust and reliable instrument that measures nine different domains of health literacy. The questionnaire was tested in a sample of chronically ill patients, and should be further tested in the general population as well as in different disease groups. The HLQ is a major addition to currently available instruments in the Netherlands, since it measures health literacy from a multi-dimensional perspective and builds on patients' experiences and skills.

People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy.

BACKGROUND: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation. METHODS: Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation. RESULTS: People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation. CONCLUSIONS: People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.

Dealing with health literacy at the organisational level, French translation and adaptation of the Vienna health literate organisation self-assessment tool.

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.

Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.

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.

The role of health literacy in explaining the association between educational attainment and the use of out-of-hours primary care services in chronically ill people: a survey study.

BACKGROUND: Low socioeconomic status (SES) is persistently associated with poor health and suboptimal use of healthcare services, and more unplanned healthcare use. Suboptimal use of emergency and acute healthcare services may increase health inequalities, due to late diagnosis or lack of continuity of care. Given that health literacy has been associated with healthcare utilisation and with education attainment, we sought to explore whether health literacy is related to the use of out-of-hours (OOH) Primary Care Services (PCSs). Additionally, we aimed to study whether and to what extent health literacy accounts for some of the association between education and OOH PSC use. METHODS: A survey including measures of education attainment, health literacy (assessed by means of the Dutch version of the nine-dimension Health Literacy Questionnaire) and use of PCS was conducted among a sample of adults diagnosed with (any) somatic chronic condition in the Netherlands (response 76.3%, n = 1811). We conducted linear and logistic regression analyses to examine associations between education level and PCS use in the past year. We performed mediation analyses to assess whether the association between education and PCS use was (partly) explained by different aspects of health literacy. We adjusted the models for patient characteristics such as age and morbidity. RESULTS: Higher education attainment was associated with higher scores on the health literacy aspects Appraisal of health information, and Navigating the healthcare system. Additionally, appraisal and navigating the healthcare system partially accounted for educational differences in PCS use. Finally, higher appraisal of health information scores were associated with higher PCS utilisation. CONCLUSION: Several aspects of health literacy were demonstrated to relate to PCS use, and partly accounted for educational differences herein. Accordingly, developing health literacy within individuals or communities may help to reduce inappropriate PCS use among people with low education.

Cancer survivors' activation to self-management and its relationship with participation in paid work and work-related problems.

OBJECTIVE: This study aimed to explore cancer survivors' level of patient activation, ie, their knowledge, skills, and confidence for self-management, and to examine its relations to their participation in paid work and work-related problems. METHODS: A total of 524 Dutch cancer survivors, 208 younger than 65 years, completed the Patient Activation Measure (PAM-13) and the Research and Development (RAND-36) General Health scale. Cancer survivors younger than 65 years also reported on their participation in paid work and work-related problems. RESULTS: The mean PAM-13 score of cancer survivors was 58.1, and of those younger than 65 years 58.7. Patient activation was not associated with participation in paid work. Employed cancer survivors with a low level of patient activation experienced more problems working accurately (34% vs 17%), finishing their work (47% vs 22%), and concentrating (59% vs 31%) than those with a higher level of patient activation. The former group also reported more work stress (62% vs 28%). CONCLUSIONS: Patient activation of cancer survivors deserves more attention, as a substantial proportion of these survivors have low activation levels, which relate to more work-related problems. Longitudinal studies are needed to explore the development of patient activation over time and its potential to improve important outcomes for people living with cancer in both the health and work domains.

Do effects of common case-mix adjusters on patient experiences vary across patient groups?

BACKGROUND: Many survey studies in health care adjust for demographic characteristics such as age, gender, educational attainment and general health when performing statistical analyses. Whether the effects of these demographic characteristics are consistent between patient groups remains to be determined. This is important as the rationale for adjustment is often that demographic sub-groups differ in their so-called 'response tendency'. This rationale may be less convincing if the effects of response tendencies vary across patient groups. The present paper examines whether the impact of these characteristics on patients' global rating of care varies across patient groups. METHODS: Secondary analyses using multi-level regression models were performed on a dataset including 32 different patient groups and 145,578 observations. For each demographic variable, the 95% expected range of case-mix coefficients across patient groups is presented. In addition, we report whether the variance of coefficients for demographic variables across patient groups is significant. RESULTS: Overall, men, elderly, lower educated people and people in good health tend to give higher global ratings. However, these effects varied significantly across patient groups and included the possibility of no effect or an opposite effect in some patient groups. CONCLUSION: The response tendency attributed to demographic characteristics - such as older respondents being milder, or higher educated respondents being more critical - is not general or universal. As such, the mechanism linking demographic characteristics to survey results on patient experiences with quality of care is more complicated than a general response tendency. It is possible that the response tendency interacts with patient group, but it is also possible that other mechanisms are at play.

Health literacy and primary health care use of ethnic minorities in the Netherlands.

BACKGROUND: In the Netherlands, ethnic minority populations visit their general practitioner (GP) more often than the indigenous population. An explanation for this association is lacking. Recently, health literacy is suggested as a possible explaining mechanism. Internationally, associations between health literacy and health care use, and between ethnicity and health literacy have been studied separately, but, so far, have not been linked to each other. In the Netherlands, some expectations have been expressed with regard to supposed low health literacy of ethnic minority groups, however, no empirical study has been done so far. The objectives of this study are therefore to acquire insight into the level of health literacy of ethnic minorities in the Netherlands and to examine whether the relationship between ethnicity and health care use can be (partly) explained by health literacy. METHODS: A questionnaire was sent to a sample of 2.116 members of the Dutch Health Care Consumer Panel (response rate 46%, 89 respondents of non-western origin). Health literacy was measured with the Health Literacy Questionnaire (HLQ) which covers nine different domains. The health literacy levels of ethnic minority groups were compared to the indigenous population. A negative binomial regression model was used to estimate the association between ethnicity and GP visits. To examine whether health literacy is an explaining factor in this association, health literacy and interaction terms of health literacy and ethnicity were added into the model. RESULTS: Differences in levels of health literacy were only found between the Turkish population and the indigenous Dutch population. This study also found an association between ethnicity and GP visits. Ethnic minorities visit their GP 33% more often than the indigenous population. Three domains of the HLQ (the ability to navigate the health care system, the ability to find information and to read and understand health information) partly explained the association between ethnicity and GP visits. CONCLUSIONS: In general, there are no differences in health literacy between most of the ethnic minority groups in the Netherlands and the indigenous Dutch population. Only the Turkish population scored significantly lower on several health literacy domains. Some domains of health literacy do explain the association between ethnicity and higher frequency of GP visits. Further research is recommended to understand the pathways through which health literacy impacts health care use.

Why patients may not exercise their choice when referred for hospital care. An exploratory study based on interviews with patients.

BACKGROUND: Various north-western European health-care systems encourage patients to make an active choice of health-care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices. METHODS: Semi-structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach. RESULTS: Three levels of choice activation were identified - passive, semi-active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health-care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or 'ended up at' a hospital. These types varied from patients who did not have a choice to patients who made an active choice. CONCLUSIONS: A large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending 'their' own hospital.

Health literacy in Europe: the development and validation of health literacy prediction models.

BACKGROUND: Health literacy is an important determinant of health, but national health literacy levels are known for only some European countries. This study aims to examine to what extent national health literacy levels can be estimated based on publicly available census data. METHOD: Multivariate models were used to predict two types of health literacy on population level. Predictors were selected based on literature, the European Health Literacy Survey (HLS-EU) and the Adult Literacy and Life Skills Survey (ALL). The HLS-EU provides insight into self-assessed health literacy and the ALL into the performance of individuals on health literacy tasks (performance-based health literacy). Dutch HLS-EU and ALL data were used to construct prediction models based on 2/3 of this data, which were validated in the remaining 1/3 of the data and (in case of self-assessed health literacy) in data from seven other European countries. RESULTS: Education is a significant predictor of perceived and performance-based health literacy. Age and working status are significant predictors of performance-based health literacy, whereas gender and income are significant predictors of self-assessed health literacy. Both typologies of health literacy can satisfactorily be predicted within samples of the Dutch population. The accuracy of estimated self-assessed health literacy varied between the seven other European countries. CONCLUSION: Prediction models based on publicly available census data can be used for estimating self-assessed and performance-based health literacy on population level. Observed health literacy levels or better prediction models are required when one is interested in ranking European countries.

Patient activation in Europe: an international comparison of psychometric properties and patients' scores on the short form Patient Activation Measure (PAM-13).

BACKGROUND: To allow better assessment of patients' individual competencies for self-management, the Patient Activation Measure (PAM) has been developed in the USA. Because the American studies have shown the PAM to be a valuable tool, several European countries have translated the instrument into their native languages (Danish, Dutch, German, Norwegian). The aim was to compare the psychometric properties in studies from the different countries and establish whether the scores on the PAM vary between the studies. METHODS: Data from the four separate studies were subjected to the same data cleaning procedures and statistical analyses. The psychometric properties of the instruments were established with measures of data quality and scale structure. The mean patient activation score and distribution across four predefined activation levels were described and the differences between the four studies were tested with ANOVA (unadjusted and adjusted) followed by a post-hoc Tukey HSD test and the Pearson chi-squared test respectively. RESULTS: The total N of the four studies was 5184. The percentage of missing values was low in all datasets, confirming the good quality of the datasets. Factor analyses revealed moderate to strong factor loadings on the first factor in all datasets. Cronbach's α was high for all version, ranging from .80 (German) to .88 (Dutch). Item-rest correlations varied between .32 and .66, indicating a moderate to strong correlation of the individual items to the sum scale. Both the mean PAM score and the distribution across activation levels differed between the four datasets. After adjustment of the PAM score, patients in Norway in particular had a higher patient activation level. CONCLUSIONS: The European translations of PAM-13 (into Danish, Dutch, German and Norwegian) resulted in four instruments with good psychometric capabilities for measuring patient activation. The mean PAM score and the distribution across activation levels differed between the four datasets.

Patients' Need for Tailored Comparative Health Care Information: A Qualitative Study on Choosing a Hospital.

BACKGROUND: The Internet is increasingly being used to provide patients with information about the quality of care of different health care providers. Although online comparative health care information is widely available internationally, and patients have been shown to be interested in this information, its effect on patients' decision making is still limited. OBJECTIVE: This study aimed to explore patients' preferences regarding information presentation and their values concerning tailored comparative health care information. Meeting patients' information presentation needs might increase the perceived relevance and use of the information. METHODS: A total of 38 people participated in 4 focus groups. Comparative health care information about hip and knee replacement surgery was used as a case example. One part of the interview focused on patients' information presentation preferences, whereas the other part focused on patients' values of tailored information (ie, showing reviews of patients with comparable demographics). The qualitative data were transcribed verbatim and analyzed using the constant comparative method. RESULTS: The following themes were deduced from the transcripts: number of health care providers to be presented, order in which providers are presented, relevancy of tailoring patient reviews, and concerns about tailoring. Participants' preferences differed concerning how many and in which order health care providers must be presented. Most participants had no interest in patient reviews that were shown for specific subgroups based on age, gender, or ethnicity. Concerns of tailoring were related to the representativeness of results and the complexity of information. A need for information about the medical specialist when choosing a hospital was stressed by several participants. CONCLUSIONS: The preferences for how comparative health care information should be presented differ between people. "Information on demand" and information about the medical specialist might be promising ways to increase the relevancy and use of online comparative health care information. Future research should focus on how different groups of people use comparative health care information for different health care choices in real life.