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The Health Literacy Questionnaire (HLQ): A new approach to measuring health literacy. Professor Rachelle Buchbinder
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The Health Literacy Questionnaire (HLQ): A new approach to measuring health literacy. Professor Rachelle Buchbinder

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Department of Clinical Epidemiology, Monash University …

Department of Clinical Epidemiology, Monash University
Presentation given at "Health Literacy Network: Crossing Disciplines, Bridging Gaps", November 26, 2013. The University of Sydney.

Published in: Health & Medicine, Education

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  • 9 scales, all with 4 or 5 items, highly reliable, and tested in large samples of target populations This questionnaire is explained in more depth by my colleagues in other seminars at this conference.
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    • 1. Heath Literacy Network: Crossing Disciplines, Bridging Gap, Sydney, 26 Nov 2013 Rachelle Buchbinder NHMRC Practitioner Fellow Director, Monash Dept Clinical Epidemiology, Cabrini Hospital Professor, Dept. Epidemiology & Preventive Medicine, Monash University
    • 2. Where did the term „health literacy‟ come from? *Attributed to Scot Simonds 1974: „…arguing case for school health education with the intention that pupils would not only be educated in the customary curriculum subjects but might become as literate‟in health as they were, for example, in history and science.‟ Subsequently acquired a more limited technical meaning: „…the currency patients need to negotiate a complex health care system” e.g. ability to read and comprehend prescription bottles, appointment slips and other essential health-related materials required to successfully function as a patient‟ AMA Council of Scientific Affairs (Selden C, et al NIH, 1999) *Tones K. Health literacy: new wine in old bottles? Health Educ Res 2002:17:287-90.
    • 3. • “ ‟ ” • “ ” • “ ” • “ ”
    • 4. Why is health literacy important? • Clinicians/health workers need to know a person’s capacity to process and understand health information to be able to communicate with them effectively • Policy makers need to understand the community‟s capacity to gain access to and understand health information to be able to set appropriate policies, provide appropriate resources • Researchers need to understand these issues to make correct judgments about research methods, findings etc • Health literacy is a fundamental element of self-care, and should be considered when developing interventions
    • 5. How can we assess health literacy? • Neglected area of clinical training/care • Routine screening - controversial Takes too long Might embarrass the patient Might stigmatize those with low literacy Might avoid low-literacy patients Clinicians not trained, beyond scope Screening – ?effective intervention Ethical not to?
    • 6. How can we assess health literacy? • Ask the patient? • Poor reliability – shame, hide it well • Educational attainment • Often used as a proxy but poor indicator • Clinician estimate? • Often wrong (overestimate or underestimate)
    • 7. Educational attainment? 45 40 35 30 25 % Grade attended Reading Level 20 15 10 5 0 0-3 4-6 7-8 10-12 >12 Grade Larson I, Schumaker HR. Comparison of literacy level of patients in a VA Arthritis Center with the reading level required by educational materials. Arthritis Care Res 1992;5:13-16.
    • 8. How has health literacy been measured in research studies (that link low health literacy to poorer health outcomes)? • Health Literacy has been assessed through measuring reading ability, comprehension and word recognition skills • 3 key tools used with patients: – Rapid Estimate of Adult Literacy in Medicine (REALM) – Test of Functional Health Literacy in Adults (TOFHLA) – Newest Vital Sign
    • 9. Rapid Estimate of Adult Literacy in Medicine: REALM 66 words Davis TC, et al. Rapid estimate of literacy levels of adult primary care patients. Fam Med 1991;23:433-5.
    • 10. Test of Functional Health Literacy in Adults: TOFHLA Numeracy (17 items) Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for measuring patients‟ literacy skills. J Gen Intern Med 1995;537-41.
    • 11. Test of Functional Health Literacy in Adults: TOFHLA Reading comprehension (50 items) Parker RM, et al. The Test of Functional Health Literacy in Adults: a new instrument for measuring patients‟ literacy skills. J Gen Intern Med 1995;537-41.
    • 12. Newest vital sign (NVS) READ TO SUBJECT: This information is on the back of a container of a pint of ice cream. QUESTIONS 1. If you eat the entire container, how many calories will you eat? Answer: 1,000 Weiss BD, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005;3:51-22.
    • 13. Prevalence of low health literacy in Australia • Application of existing measures of health literacy • Population-based survey of health literacy • Random sample adult population from 2004 electoral roll – 310 participants • Face-to-face interviews • Trained interviewers (n=10) Barber M, Staples M, Osborne RH, Clerehan R, Elder C, Buchbinder R. Up to a quarter of the population may have suboptimal health literacy: a population-based survey. Health Promotion International 2009; 24:252-261.
    • 14. REALM (N = 310) Grade 4-6 May need low-literacy materials; may not be able to read prescription labels Grade 7-8 May struggle with most currently available patient education materials High school Should be able to read most patient education materials TOFHLA 6 (2%) 35 (11%) 269 (87%) (N = 309) Inadequate May be unable to read and interpret health texts Marginal Would have difficulty reading/interpreting health texts Adequate Could read and interpret most health texts NVS 8 (3%) 13 (4%) 288 (93%) (N = 308) 0-1 Suggests highly likely (50% or more) limited literacy 2-3 Indicates possibility of limited literacy 4-6 Almost always indicates adequate literacy 22 (7%) 58 (19%) 228 (74%)
    • 15. ‟ ability to read and pronounce common medical words and lay terms a good measure of health literacy?
    • 16. Pronunciation versus definition REALM words Pronunciation % Correct Hormones Diabetes* Obesity Arthritis* Osteoporosis Definition % % % Partially Correct Incorrect Correct 97 27 40 33 95 40 38 22 92 46 51 3 99 74 11 16 90 73 9 18 * Having the condition not associated with better definitions Barber M, et al. Up to a quarter of the population may have suboptimal health literacy: a population-based survey. Health Promotion International 2009; 24:252-261.
    • 17. Pronunciation of words ≠ understanding of words ! Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing health literacy: A new domain for collaboration between language testers and health professionals. Language Assessment Quarterly 2012;9(3):205-24.
    • 18. Understanding of words ≠ educational level Figure 3 25 20 Number defined Correctly 15 10 5 Pearson Correlation Coefficient = 0.334 0 ed ol et o pl Sch m Co ary im Pr e ol ed l m ho et o pl cho So Sc om S gh C gh Hi i H ty si fe Ta r ive n U Education Level Elder C, Barber M, Staples M, Osborne RH, Clerehan R, Buchbinder R. Assessing health literacy: A new domain for collaboration between language testers and health professionals. Language Assessment Quarterly 2012;9(3):205-24.
    • 19. Jordan J, Osborne R, Buchbinder R. A critical appraisal of the content and psychometric properties of 19 health literacy indices. J Clin Epidemiol 2010
    • 20. Osborne, Batterham, Elsworth Hawkins, Buchbinder BMC Public Health 2013, 13:658.
    • 21. Steps in questionnaire development 1. 2. 3. 4. 5. 6. 7. Purpose and conceptualisation Draft item development –strict item writing rules, cognitive interviews Administration to a „construction sample‟ Psychometric analysis and refinement –Structural equation modelling –Rasch analysis Administration to a „validation sample‟ Finalization of the tool Develop a web of evidence of the value of the tool in target settings
    • 22. Purpose of the HLQ • Generic • Identify potentially modifiable abilities and factors • Capable of detecting a wide range of health literacy needs of people in the community • Could be used for a variety of purposes – Descriptive of individual, clinical or whole population – Evaluative - ie measure response to public health or clinical interventions
    • 23. Conceptualisation of health literacy Seeding statement: “Thinking broadly about your experiences in trying to look after your health, what abilities does a person need to have in order to get, understand, and use health information to make informed decisions about their health?”
    • 24. Results: concept map (workshop #1)
    • 25. Scales of the Health literacy Questionnaire Strongly Agree—Strongly disagree 1. Feeling understood and supported by healthcare providers • I can rely on at least one healthcare provider 2. Having sufficient information to manage my health • I am sure I have all the information I need to manage my health effectively 3. Actively managing my health • I spend quite a lot of time actively managing my health Cannot do—Very easy 6. Ability to actively engage with healthcare providers • Discuss things with healthcare providers until you understand all you need to 7. Navigating the healthcare system • Work out what is the best care for you • Decide which healthcare provider you need to see 8. Ability to find good health information 4. Social support for health • Get health information in words you understand • Find information about health problems 5. Appraisal of health information 9. Understand health information well enough to know what to do • I have at least one person who can come to medical appointments with me • When I see new information about health, I check up on whether it is true or not • I compare health information from different sources • Read and understand all the information on medication labels • Understand what healthcare providers are asking you to do
    • 26. Breadth and depth • Each scale is an independent questionnaire and has items that measure a wide range of Health Literacy needs and capabilities
    • 27. Scales of difficulty…  Find information about health problems Find health information from several different places 
    • 28. Distribution of scores
    • 29. Osborne R, Batterham R, Elsworth G, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health 2013; 13: 658.
    • 30. Healthcare Provider Support Factor Loading (95%CI) R2 Difficulty (95% CI) Ordered 1 I have at least one healthcare provider who knows me well 0.81 (0.77-0.85) Yes 0.84 2 I have at least one healthcare provider I can discuss my health problems with 0.90 (0.87-0.93) Yes 0.99 (0.97- 1.01) 0.98 3 I have the healthcare providers I need help me work out what I need to do 0.82 (0.78-0.85) Yes 0.77 (0.72- 0.81) 0.58 4 I can rely on at least one healthcare provider 0.90 (0.87-0.92) Yes 0.91 (0.87- 0.94) 0.82 (0.80-0.8) Model Fit – χ²WLSMV(2) = 10.15, p= 0.0063, CFI = 0.998, TLI = 0.995, RMSEA = 0.100, and WRMR = 0.367. Composite reliability = 0.88 (0.86-0.90) 0.71
    • 31. 40% of people cannot do this or find it very difficulty Measurement across the full range of the construct through carefully written items Ability to Access Health Information Item Difficulty 1. Find health information from several different places 0.60 Hardest 5. Find information about health problems 0.78 Easiest
    • 32. 40% of people cannot do this or find it very difficulty Measurement across the full range of the construct through carefully written items Ability to Access Health Information Item Difficulty 1. Find health information from several different places 0.60 2. Get health information by yourself 0.64 3. Get information about health so you are up to date with the best information 0.70 4. Get health information in words you understand 5. Find information about health problems 0.74 0.78 Hardest Easiest
    • 33. 28% of people cannot do this or have great difficulty Measurement across the full range of the construct through carefully written items Active engagement with healthcare providers Item Difficulty 1. Make sure that healthcare providers understand your problems properly 0.72 2. Discuss things with healthcare providers until you understand all you need to 0.78 3. Ask healthcare providers questions to get the health information you need 0.78 4. Have good discussions about your health with doctors 5. Feel able to discuss your health concerns with a healthcare provider 0.82 0.86 Hardest Easiest
    • 34. Psychometrics of HLQ – highly robust Scale N items 1. Feeling understood and supported by healthcare providers 4 2. Having sufficient information to manage my health 4 3. Actively managing my health 5 4. Social support for health 5 5. Appraisal of health information 5 6. Ability to actively engage with healthcare providers 5 7. Navigating the healthcare system 5 8. Ability to find good health information 5 9. Understand health information well enough to know what to do 5 Reliability 0.88 0.88 0.86 0.84 0.77 0.90 0.88 0.89 0.88 Calibration sample N=634 (community health, ED, outpatients) Replication sample N=412 (ED: rural, younger people) A 9-factor CFA model (44 items) no cross-loadings or correlated residuals allowed. Highly satisfactory: χ2WLSMV(866 d.f.) = 2927.60, p<0.0000, CFI = 0.936, TLI = 0.930, RMSEA = 0.076, and WRMR = 1.698.
    • 35. Health literacy is much more than literacy Have physical access to services Able to put health as a priority Trust in the healthcare system and health workers Have the energy and strength to engage Have “cultural” access to services Sense that “health” is worth the effort Believe that various health actions will be worth it Be supported by family and community
    • 36. Summary •Health literacy is much more than literacy •HLQ provides detailed information about health literacy across 9 domains •Capable of detecting an individual’s health literacy needs •Might be useful in identifying individual, organisational, policy interventions •Might change over time •Might be responsive to change