Melanie Hawkins

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

BackgroundHealth 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.MethodsUsing 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.ResultsInitially 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.ConclusionsThe 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.

Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol

BackgroundIncreasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.MethodsThis project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).DiscussionThis project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.

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

BackgroundThe 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.MethodsSixteen 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.ResultsHighest 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.ConclusionThis 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.

Application of validity theory and methodology to patient-reported outcome measures (PROMs): building an argument for validity

BackgroundData from subjective patient-reported outcome measures (PROMs) are now being used in the health sector to make or support decisions about individuals, groups and populations. Contemporary validity theorists define validity not as a statistical property of the test but as the extent to which empirical evidence supports the interpretation of test scores for an intended use. However, validity testing theory and methodology are rarely evident in the PROM validation literature. Application of this theory and methodology would provide structure for comprehensive validation planning to support improved PROM development and sound arguments for the validity of PROM score interpretation and use in each new context.ObjectiveThis paper proposes the application of contemporary validity theory and methodology to PROM validity testing.Illustrative exampleThe validity testing principles will be applied to a hypothetical case study with a focus on the interpretation and use of scores from a translated PROM that measures health literacy (the Health Literacy Questionnaire or HLQ).DiscussionAlthough robust psychometric properties of a PROM are a pre-condition to its use, a PROM’s validity lies in the sound argument that a network of empirical evidence supports the intended interpretation and use of PROM scores for decision making in a particular context. The health sector is yet to apply contemporary theory and methodology to PROM development and validation. The theoretical and methodological processes in this paper are offered as an advancement of the theory and practice of PROM validity testing in the health sector.

Producing an evidence‐based treatment information website in partnership with people affected by multiple sclerosis

In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS.

Patient perspectives on a personally controlled electronic health record used in regional Australia ‘I can be like my own doctor’

Background: Personally controlled electronic health records (PCEHRs) are being implemented throughout Australia; yet few studies have investigated patients’ experiences of using a PCEHR. Aim: To explore patients’ experiences and perspectives of using a locally developed PCEHR implemented in an Australian health service. Method: Twelve patients completed individual semi-structured telephone interviews, which underwent inductive analysis. Results: Participants described two main interdependent advantages of PCEHRs: improved quality of healthcare through better information sharing and enhanced patient capacity for self-management. To realise these advantages, widespread acceptance and use of PCEHRs by healthcare providers is required, and PCEHRs need to be simple to use and accessible. Conclusion: PCEHRs can produce tangible benefits for patients. However, maximum benefits will be realised when PCEHRs contain a complete collection of relevant health information and are carefully designed for easy use.

Barriers to Breast Cancer Screening among Diverse Cultural Groups in Melbourne, Australia

This study explored the association between health literacy, barriers to breast cancer screening, and breast screening participation for women from culturally and linguistically diverse (CALD) backgrounds. English-, Arabic- and Italian-speaking women (n = 317) between the ages of 50 to 74 in North West Melbourne, Australia were recruited to complete a survey exploring health literacy, barriers to breast cancer screening, and self-reported screening participation. A total of 219 women (69%) reported having a breast screen within the past two years. Results revealed that health literacy was not associated with screening participation. Instead, emotional barriers were a significant factor in the self-reported uptake of screening. Three health literacy domains were related to lower emotional breast screening barriers, feeling understood and supported by healthcare providers, social support for health and understanding health information well enough to know what to do. Compared with English- and Italian-speaking women, Arabic-speaking women reported more emotional barriers to screening and greater challenges in understanding health information well enough to know what to do. Interventions that can improve breast screening participation rates should aim to reduce emotional barriers to breast screening, particularly for Arabic-speaking women.

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

BackgroundThe 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.MethodsDevelopment 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.ResultsParticipating 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.ConclusionsPreliminary 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.