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Department of Clinical Epidemiology, Monash University Presentation given at "Health Literacy Network: Crossing Disciplines, Bridging Gaps", November 26, 2013. The University of Sydney.
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 literatein 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 persons capacity to process and understand health information to be able to communicate with them effectively Policy makers need to understand the communitys 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 Level20 15 10 5 0 0-34-67-810-12 >12GradeLarson 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 wordsDavis 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: 1,000Weiss 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 4-6May need low-literacy materials; may not be able to read prescription labelsGrade 7-8May struggle with most currently available patient education materialsHigh schoolShould be able to read most patient education materialsTOFHLA6 (2%) 35 (11%) 269 (87%) (N = 309)InadequateMay be unable to read and interpret health textsMarginalWould have difficulty reading/interpreting health textsAdequateCould read and interpret most health textsNVS8 (3%) 13 (4%)288 (93%) (N = 308)0-1Suggests highly likely (50% or more) limited literacy2-3Indicates possibility of limited literacy4-6Almost always indicates adequate literacy22 (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 versusdefinition REALM words Pronunciation % CorrectHormones Diabetes* Obesity Arthritis* OsteoporosisDefinition % % % Partially Correct Incorrect Correct97274033954038229246513997411169073918* 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 2520Number defined Correctly15105Pearson Correlation Coefficient = 0.3340ed ol et o pl Sch m Co ary im Pre ol ed l m ho et o pl cho So Sc om S gh C gh Hi i Htysife Tar ivenUEducation LevelElder 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 AgreeStrongly disagree1. Feeling understood and supported by healthcare providers I can rely on at least one healthcare provider2. Having sufficient information to manage my health I am sure I have all the information I need to manage my health effectively3. Actively managing my health I spend quite a lot of time actively managing my healthCannot doVery easy 6. Ability to actively engage with healthcare providers Discuss things with healthcare providers until you understand all you need to7. Navigating the healthcare system Work out what is the best care for you Decide which healthcare provider you need to see8. Ability to find good health information4. Social support for health Get health information in words you understand Find information about health problems5. Appraisal of health information9. 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 difficultyFind 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)R2Difficulty (95% CI)Ordered1 I have at least one healthcare provider who knows me well0.81 (0.77-0.85)Yes0.842 I have at least one healthcare provider I can discuss my health problems with0.90 (0.87-0.93)Yes0.99 (0.97- 1.01) 0.983 I have the healthcare providers I need help me work out what I need to do0.82 (0.78-0.85)Yes0.77 (0.72- 0.81) 0.584 I can rely on at least one healthcare provider0.90 (0.87-0.92)Yes0.91 (0.87- 0.94) 0.82(0.80-0.8)Model Fit WLSMV(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 difficultyMeasurement across the full range of the construct through carefully written items Ability to Access Health InformationItem Difficulty1. Find health information from several different places0.60Hardest5. Find information about health problems0.78Easiest 32. 40% of people cannot do this or find it very difficultyMeasurement across the full range of the construct through carefully written items Ability to Access Health InformationItem Difficulty1. Find health information from several different places0.602. Get health information by yourself0.643. Get information about health so you are up to date with the best information0.704. Get health information in words you understand 5. Find information about health problems0.74 0.78HardestEasiest 33. 28% of people cannot do this or have great difficultyMeasurement across the full range of the construct through carefully written items Active engagement with healthcare providersItem Difficulty1. Make sure that healthcare providers understand your problems properly0.722. Discuss things with healthcare providers until you understand all you need to0.783. Ask healthcare providers questions to get the health information you need0.784. Have good discussions about your health with doctors 5. Feel able to discuss your health concerns with a healthcare provider0.82 0.86HardestEasiest 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 5Reliability 0.88 0.88 0.86 0.84 0.77 0.90 0.88 0.89 0.88Calibration 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: 2WLSMV(866 d.f.) = 2927.60, p