Health literacy development is central to the prevention and control of non-communicable diseases.

The WHO's report Health literacy development for the prevention and control of non-communicable diseases (NCDs) delivers practical what-to-do how-to-do guidance for health literacy development to build, at scale, contextually-relevant public health actions to reduce inequity and the burden of NCDs on individuals, health systems and economies. The key premise for health literacy development is that people's health awareness and behaviours are linked to lifelong experiences and social practices, which may be multilayered, hidden and beyond their control. Meaningful community engagement, local ownership and locally driven actions are needed to identify health literacy strengths, challenges and preferences to build locally fit-for-purpose and implementable actions. Health literacy development needs to underpin local and national policy, laws and regulations to create enabling environments that reduce community exposures to NCD risk factors. Deficit approaches and siloed health system and policy responses need to be avoided, focusing instead on integrating community-based solutions through co-design, cognisant of people's daily experiences and social practices.

Digital Health Literacy as a Predictor of Awareness, Engagement, and Use of a National Web-Based Personal Health Record: Population-Based Survey Study.

BACKGROUND: Web-based personal health records (PHRs) have the potential to improve the quality, accuracy, and timeliness of health care. However, the international uptake of web-based PHRs has been slow. Populations experiencing disadvantages are less likely to use web-based PHRs, potentially widening health inequities within and among countries. OBJECTIVE: With limited understanding of the predictors of community uptake and use of web-based PHR, the aim of this study was to identify the predictors of awareness, engagement, and use of the Australian national web-based PHR, My Health Record (MyHR). METHODS: A population-based survey of adult participants residing in regional Victoria, Australia, was conducted in 2018 using telephone interviews. Logistic regression, adjusted for age, was used to assess the relationship among digital health literacy, health literacy, and demographic characteristics, and the 3 dependent variables of MyHR: awareness, engagement, and use. Digital health literacy and health literacy were measured using multidimensional tools, using all 7 scales of the eHealth Literacy Questionnaire and 4 out of the 9 scales of the Health Literacy Questionnaire. RESULTS: A total of 998 responses were analyzed. Many elements of digital health literacy were strongly associated with MyHR awareness, engagement, and use. A 1-unit increase in each of the 7 eHealth Literacy Questionnaire scales was associated with a 2- to 4-fold increase in the odds of using MyHR: using technology to process health information (odds ratio [OR] 4.14, 95% CI 2.34-7.31), understanding of health concepts and language (OR 2.25, 95% CI 1.08-4.69), ability to actively engage with digital services (OR 4.44, 95% CI 2.55-7.75), feel safe and in control (OR 2.36, 95% CI 1.43-3.88), motivated to engage with digital services (OR 4.24, 95% CI 2.36-7.61), access to digital services that work (OR 2.49, 95% CI 1.32-4.69), and digital services that suit individual needs (OR 3.48, 95% CI 1.97-6.15). The Health Literacy Questionnaire scales of health care support, actively managing health, and social support were also associated with a 1- to 2-fold increase in the odds of using MyHR. Using the internet to search for health information was another strong predictor; however, older people and those with less education were less likely to use MyHR. CONCLUSIONS: This study revealed strong and consistent patterns of association between digital health literacy and the use of a web-based PHR. The results indicate potential actions for promoting PHR uptake, including improving digital technology and skill experiences that may improve digital health literacy and willingness to engage in web-based PHR. Uptake may also be improved through more responsive digital services, strengthened health care, and better social support. A holistic approach, including targeted solutions, is needed to ensure that web-based PHR can realize its full potential to help reduce health inequities.

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.

Codesign and implementation of an equity-promoting national health literacy programme for people living with inflammatory bowel disease (IBD): a protocol for the application of the Optimising Health Literacy and Access (Ophelia) process.

INTRODUCTION: Non-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn's & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers. METHODS AND ANALYSIS: Health literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people's experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021-2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes. ETHICS AND DISSEMINATION: Ethics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968-4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968-4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.

Addressing Health Literacy Needs in Rheumatology: Which Patient Health Literacy Profiles Need the Attention of Health Professionals?

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.

Conceptualisation and development of the Conversational Health Literacy Assessment Tool (CHAT).

BACKGROUND: The aim of this study was to develop a tool to support health workers' ability to identify patients' multidimensional health literacy strengths and challenges. The tool was intended to be suitable for administration in healthcare settings where health workers must identify health literacy priorities as the basis for person-centred care. METHODS: Development was based on a qualitative co-design process that used the Health Literacy Questionnaire (HLQ) as a framework to generate questions. Health workers were recruited to participate in an online consultation, a workshop, and two rounds of pilot testing. RESULTS: Participating health workers identified and refined ten questions that target five areas of assessment: supportive professional relationships, supportive personal relationships, health information access and comprehension, current health behaviours, and health promotion barriers and support. CONCLUSIONS: Preliminary evidence suggests that application of the Conversational Health Literacy Assessment Tool (CHAT) can support health workers to better understand the health literacy challenges and supportive resources of their patients. As an integrated clinical process, the CHAT can supplement existing intake and assessment procedures across healthcare settings to give insight into patients' circumstances so that decisions about care can be tailored to be more appropriate and effective.

A Multidimensional Tool Based on the eHealth Literacy Framework: Development and Initial Validity Testing of the eHealth Literacy Questionnaire (eHLQ).

BACKGROUND: For people to be able to access, understand, and benefit from the increasing digitalization of health services, it is critical that services are provided in a way that meets the user's needs, resources, and competence. OBJECTIVE: The objective of the study was to develop a questionnaire that captures the 7-dimensional eHealth Literacy Framework (eHLF). METHODS: Draft items were created in parallel in English and Danish. The items were generated from 450 statements collected during the conceptual development of eHLF. In all, 57 items (7 to 9 items per scale) were generated and adjusted after cognitive testing. Items were tested in 475 people recruited from settings in which the scale was intended to be used (community and health care settings) and including people with a range of chronic conditions. Measurement properties were assessed using approaches from item response theory (IRT) and classical test theory (CTT) such as confirmatory factor analysis (CFA) and reliability using composite scale reliability (CSR); potential bias due to age and sex was evaluated using differential item functioning (DIF). RESULTS: CFA confirmed the presence of the 7 a priori dimensions of eHLF. Following item analysis, a 35-item 7-scale questionnaire was constructed, covering (1) using technology to process health information (5 items, CSR=.84), (2) understanding of health concepts and language (5 items, CSR=.75), (3) ability to actively engage with digital services (5 items, CSR=.86), (4) feel safe and in control (5 items, CSR=.87), (5) motivated to engage with digital services (5 items, CSR=.84), (6) access to digital services that work (6 items, CSR=.77), and (7) digital services that suit individual needs (4 items, CSR=.85). A 7-factor CFA model, using small-variance priors for cross-loadings and residual correlations, had a satisfactory fit (posterior productive P value: .27, 95% CI for the difference between the observed and replicated chi-square values: -63.7 to 133.8). The CFA showed that all items loaded strongly on their respective factors. The IRT analysis showed that no items were found to have disordered thresholds. For most scales, discriminant validity was acceptable; however, 2 pairs of dimensions were highly correlated; dimensions 1 and 5 (r=.95), and dimensions 6 and 7 (r=.96). All dimensions were retained because of strong content differentiation and potential causal relationships between these dimensions. There is no evidence of DIF. CONCLUSIONS: The eHealth Literacy Questionnaire (eHLQ) is a multidimensional tool based on a well-defined a priori eHLF framework with robust properties. It has satisfactory evidence of construct validity and reliable measurement across a broad range of concepts (using both CTT and IRT traditions) in various groups. It is designed to be used to understand and evaluate people's interaction with digital health services.

The Health Literacy Questionnaire (HLQ) at the patient-clinician interface: a qualitative study of what patients and clinicians mean by their HLQ scores.

BACKGROUND: The Health Literacy Questionnaire (HLQ) has nine scales that each measure an aspect of the multidimensional construct of health literacy. All scales have good psychometric properties. However, it is the interpretations of data within contexts that must be proven valid, not just the psychometric properties of a measurement instrument. The purpose of this study was to establish the extent of concordance and discordance between individual patient and clinician interpretations of HLQ data in the context of complex case management. METHODS: Sixteen patients with complex needs completed the HLQ and were interviewed to discuss the reasons for their answers. Also, the clinicians of each of these patients completed the HLQ about their patient, and were interviewed to discuss the reasons for their answers. Thematic analysis of HLQ scores and interview data determined the extent of concordance between patient and clinician HLQ responses, and the reasons for discordance. RESULTS: Highest concordance (80%) between patient and clinician item-response pairs was seen in Scale 1 and highest discordance (56%) was seen in Scale 6. Four themes were identified to explain discordance: 1) Technical or literal meaning of specific words; 2) Patients' changing or evolving circumstances; 3) Different expectations and criteria for assigning HLQ scores; and 4) Different perspectives about a patient's reliance on healthcare providers. CONCLUSION: This study shows that the HLQ can act as an adjunct to clinical practice to help clinicians understand a patient's health literacy challenges and strengths early in a clinical encounter. Importantly, clinicians can use the HLQ to detect differences between their own perspectives about a patient's health literacy and the patient's perspective, and to initiate discussion to explore this. Provision of training to better detect these differences may assist clinicians to provide improved care. The outcomes of this study contribute to the growing body of international validation evidence about the use of the HLQ in different contexts. More specifically, this study has shown that the HLQ has measurement veracity at the patient and clinician level and may support clinicians to understand patients' health literacy and enable a deeper engagement with healthcare services.

Systematic development and implementation of interventions to OPtimise Health Literacy and Access (Ophelia).

BACKGROUND: The need for healthcare strengthening to enhance equity is critical, requiring systematic approaches that focus on those experiencing lesser access and outcomes. This project developed and tested the Ophelia (OPtimising HEalth LIteracy and Access) approach for co-design of interventions to improve health literacy and equity of access. Eight principles guided this development: Outcomes focused; Equity driven, Needs diagnosis, Co-design, Driven by local wisdom, Sustainable, Responsive and Systematically applied. We report the application of the Ophelia process where proof-of-concept was defined as successful application of the principles. METHODS: Nine sites were briefed on the aims of the project around health literacy, co-design and quality improvement. The sites were rural/metropolitan, small/large hospitals, community health centres or municipalities. Each site identified their own priorities for improvement; collected health literacy data using the Health Literacy Questionnaire (HLQ) within the identified priority groups; engaged staff in co-design workshops to generate ideas for improvement; developed program-logic models; and implemented their projects using Plan-Do-Study-Act (PDSA) cycles. Evaluation included assessment of impacts on organisations, practitioners and service users, and whether the principles were applied. RESULTS: Sites undertook co-design workshops involving discussion of service user needs informed by HLQ (n = 813) and interview data. Sites generated between 21 and 78 intervention ideas and then planned their selected interventions through program-logic models. Sites successfully implemented interventions and refined them progressively with PDSA cycles. Interventions generally involved one of four pathways: development of clinician skills and resources for health literacy, engagement of community volunteers to disseminate health promotion messages, direct impact on consumers' health literacy, and redesign of existing services. Evidence of application of the principles was found in all sites. CONCLUSIONS: The Ophelia approach guided identification of health literacy issues at each participating site and the development and implementation of locally appropriate solutions. The eight principles provided a framework that allowed flexible application of the Ophelia approach and generation of a diverse set of interventions. Changes were observed at organisational, staff, and community member levels. The Ophelia approach can be used to generate health service improvements that enhance health outcomes and address inequity of access to healthcare.

Structural properties and psychometric improvements of the Health Literacy Questionnaire in a Slovak population.

OBJECTIVES: Health literacy is an important determinant of health and health equity and therefore requires robust measurement. The aim was to examine the psychometric properties of the Slovak version of the Health Literacy Questionnaire (HLQ) including revised wording of response categories. METHODS: A cross-sectional survey of the general Slovak adult population (N = 360, mean age 39) was conducted with the HLQ following its translation and cultural adaptation. Psychometric tests (confirmatory factor analysis, Cronbach's alpha, composite reliability) and association (linear regression, ANOVA) with sociodemographic variables were undertaken. The performance of alternative version of response options were explored with the Mann-Whittney U test and item response theory. RESULTS: A highly restrictive nine-factor confirmatory factor analysis showed acceptable fit [χ 2WLSMV = 1684 (df = 866), p < 0.0001; CFI = 0.943, TLI = 0.938, RMSEA = 0.051, WRMR = 1.297] and reliability was acceptable (range 0.73-0.84). The revised response categories had a better distribution with lower average scores in three domains, compared with the original, and improved item information curves. CONCLUSIONS: The nine HLQ scales are robust, providing a fine-grained assessment of health literacy. The revised response options improve psychometric properties and are recommended for future studies.

A systematic analysis of the needs of people with HIV in Australia: stakeholder views of the key elements for a healthy life.

Background: The HealthMap project is developing an intervention to reduce cardiovascular risk in people living with HIV. As part of the formative stages of the intervention design, we sought to understand the needs of people with HIV (PWHIV). Methods: Two concept-mapping workshops with PWHIV (n=10), and one with HIV care providers (n=6) were conducted. The workshop findings were consolidated into a questionnaire administered to PWHIV (n=300) and HIV care providers (n=107). Participants were asked to rate the importance of each of 81 presented needs and the degree to which it was currently being met. Results: Workshops provided insights into what PWHIV perceive they need, to live with and manage their condition, and its impact on their life; these included: (1) clinical science research and development; (2) information and support; (3) personal situation; (4) healthcare quality; (5) access to services; (6) access to services specific to ageing; and (7) social justice. Questionnaire results revealed that PWHIV considered information and support, and research and development most important. For providers, healthcare quality, clients' personal situation, and social justice were most important. In terms of unmet needs, PWHIV and providers both highlighted issues in the areas of social justice, and access to aged care services. Conclusions: PWHIV and HIV providers continue to report unmet needs in the areas of social justice and emerging concerns about access to aged care services. Services must continue to address these issues of access and equity.

The burden of neck pain: its meaning for persons with neck pain and healthcare providers, explored by concept mapping.

PURPOSE: To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). METHODS: Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. RESULTS: Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. CONCLUSION: This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.

Distribution of health literacy strengths and weaknesses across socio-demographic groups: a cross-sectional survey using the Health Literacy Questionnaire (HLQ).

BACKGROUND: Recent advances in the measurement of health literacy allow description of a broad range of personal and social dimensions of the concept. Identifying differences in patterns of health literacy between population sub-groups will increase understanding of how health literacy contributes to health inequities and inform intervention development. The aim of this study was to use a multi-dimensional measurement tool to describe the health literacy of adults in urban and rural Victoria, Australia. METHODS: Data were collected from clients (n = 813) of 8 health and community care organisations, using the Health Literacy Questionnaire (HLQ). Demographic and health service data were also collected. Data were analysed using descriptive statistics. Effect sizes (ES) for standardised differences in means were used to describe the magnitude of difference between demographic sub-groups. RESULTS: Mean age of respondents was 72.1 (range 19-99) years. Females comprised 63% of the sample, 48% had not completed secondary education, and 96% reported at least one existing health condition. Small to large ES were seen for mean differences in HLQ scales between most demographic groups. Compared with participants who spoke English at home, those not speaking English at home had much lower scores for most HLQ scales including the scales 'Understanding health information well enough to know what to do' (ES -1.09 [95% confidence interval (CI) -1.33 to -0.84]), 'Ability to actively engage with healthcare providers' (ES -1.00 [95% CI -1.24, -0.75]), and 'Navigating the healthcare system' (ES -0.72 [95% CI -0.97, -0.48]). Similar patterns and ES were seen for participants born overseas compared with those born in Australia. Smaller ES were seen for sex, age group, private health insurance status, number of chronic conditions, and living alone. CONCLUSIONS: This study has revealed some large health literacy differences across nine domains of health literacy in adults using health services in Victoria. These findings provide insights into the relationship between health literacy and socioeconomic position in vulnerable groups and, given the focus of the HLQ, provide guidance for the development of equitable interventions.

The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform.

BACKGROUND: Health literacy is a multi-dimensional concept comprising a range of cognitive, affective, social, and personal skills and attributes. This paper describes the research and development protocol for a large communities-based collaborative project in Victoria, Australia that aims to identify and respond to health literacy issues for people with chronic conditions. The project, called Ophelia (OPtimising HEalth LIterAcy) Victoria, is a partnership between two universities, eight service organisations and the Victorian Government. Based on the identified issues, it will develop and pilot health literacy interventions across eight disparate health services to inform the creation of a health literacy response framework to improve health outcomes and reduce health inequalities. METHODS/DESIGN: The protocol draws on many inputs including the experience of the partners in previous co-creation and roll-out of large-scale health-promotion initiatives. Three key conceptual models/discourses inform the protocol: intervention mapping; quality improvement collaboratives, and realist synthesis. The protocol is outcomes-oriented and focuses on two key questions: 'What are the health literacy strengths and weaknesses of clients of participating sites?', and 'How do sites interpret and respond to these in order to achieve positive health and equity outcomes for their clients?'. The process has six steps in three main phases. The first phase is a needs assessment that uses the Health Literacy Questionnaire (HLQ), a multi-dimensional measure of health literacy, to identify common health literacy needs among clients. The second phase involves front-line staff and management within each service organisation in co-creating intervention plans to strategically respond to the identified local needs. The third phase will trial the interventions within each site to determine if the site can improve identified limitations to service access and/or health outcomes. DISCUSSION: There have been few attempts to assist agencies to identify, and respond, in a planned way, to the varied health literacy needs of their clients. This project will assess the potential for targeted, locally-developed health literacy interventions to improve access, equity and outcomes.

The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ).

BACKGROUND: Health literacy has become an increasingly important concept in public health. We sought to develop a comprehensive measure of health literacy capable of diagnosing health literacy needs across individuals and organisations by utilizing perspectives from the general population, patients, practitioners and policymakers. METHODS: Using a validity-driven approach we undertook grounded consultations (workshops and interviews) to identify broad conceptually distinct domains. Questionnaire items were developed directly from the consultation data following a strict process aiming to capture the full range of experiences of people currently engaged in healthcare through to people in the general population. Psychometric analyses included confirmatory factor analysis (CFA) and item response theory. Cognitive interviews were used to ensure questions were understood as intended. Items were initially tested in a calibration sample from community health, home care and hospital settings (N=634) and then in a replication sample (N=405) comprising recent emergency department attendees. RESULTS: Initially 91 items were generated across 6 scales with agree/disagree response options and 5 scales with difficulty in undertaking tasks response options. Cognitive testing revealed that most items were well understood and only some minor re-wording was required. Psychometric testing of the calibration sample identified 34 poorly performing or conceptually redundant items and they were removed resulting in 10 scales. These were then tested in a replication sample and refined to yield 9 final scales comprising 44 items. A 9-factor CFA model was fitted to these items with no cross-loadings or correlated residuals allowed. Given the very restricted nature of the model, the fit was quite satisfactory: χ²WLSMV(866 d.f.) = 2927, p<0.000, CFI = 0.936, TLI = 0.930, RMSEA = 0.076, and WRMR = 1.698. Final scales included: Feeling understood and supported by healthcare providers; Having sufficient information to manage my health; Actively managing my health; Social support for health; Appraisal of health information; Ability to actively engage with healthcare providers; Navigating the healthcare system; Ability to find good health information; and Understand health information well enough to know what to do. CONCLUSIONS: The HLQ covers 9 conceptually distinct areas of health literacy to assess the needs and challenges of a wide range of people and organisations. Given the validity-driven approach, the HLQ is likely to be useful in surveys, intervention evaluation, and studies of the needs and capabilities of individuals.

The health literacy management scale (HeLMS): a measure of an individual's capacity to seek, understand and use health information within the healthcare setting.

OBJECTIVE: Health literacy refers to an individual's ability to seek, understand, and use health information. This paper describes the development and psychometric testing of the health literacy management scale (HeLMS). METHODS: Content areas were identified from a conceptual framework derived from interviews and concept mapping. Items were generated from statements from concept mapping participants. Construction (N=333) and replication (N=350) samples were participants in chronic disease self-management programs and emergency department attendees. Factor analysis was used to refine constructs and define psychometric properties. RESULTS: Consultations generated 8 scales each with 4-5 items: Understanding health information, Accessing GP healthcare services, Communication with health professionals, Being proactive and Using health information, Patient attitudes towards their health, Social support, and Socioeconomic considerations. Confirmatory factor analyses indicated good fit of the data with the model (RMSEA=0.07, SRMR=0.05, CFI=0.97) and all domains had high internal consistency (Cronbach alpha>0.82). CONCLUSION: The HeLMS has acceptable psychometric properties and assesses a range of health literacy constructs important to patients when seeking, understanding and using health information within the healthcare system. PRACTICE IMPLICATIONS: The HeLMS presents a new approach to assessing health literacy in healthcare settings.

A validity-driven approach to the understanding of the personal and societal burden of low back pain: development of a conceptual and measurement model.

INTRODUCTION: While the importance and magnitude of the burden of low back pain upon the individual is well recognized, a systematic understanding of the impact of the condition on individuals is currently hampered by the lack of an organized understanding of what aspects of a person's life are affected and the lack of comprehensive measures for these effects. The aim of the present study was to develop a conceptual and measurement model of the overall burden of low back pain from the individual's perspective using a validity-driven approach. METHODS: To define the breadth of low back pain burden we conducted three concept-mapping workshops to generate an item pool. Two face-to-face workshops (Australia) were conducted with people with low back pain and clinicians and policy-makers, respectively. A third workshop (USA) was held with international multidisciplinary experts. Multidimensional scaling, cluster analysis, participant input and thematic analyses organized participants' ideas into clusters of ideas that then informed the conceptual model. RESULTS: One hundred and ninety-nine statements were generated. Considerable overlap was observed between groups, and four major clusters were observed--Psychosocial, Physical, Treatment and Employment--each with between two and six subclusters. Content analysis revealed that elements of the Psychosocial cluster were sufficiently distinct to be split into Psychological and Social, and a further cluster of elements termed Positive Effects also emerged. Finally, a hypothesized structure was proposed with six domains and 16 subdomains. New domains not previously considered in the back pain field emerged for psychometric verification: loss of independence, worry about the future, and negative or discriminatory actions by others. CONCLUSIONS: Using a grounded approach, an explicit a priori and testable model of the overall burden of low back pain has been proposed that captures the full breadth of the burden experienced by patients and observed by experts.