Conceptualising and measuring health literacy from the patient perspective

1. Conceptualising and measuring health literacy from the patient perspective Dr Joanne Jordan Centre for Rheumatic Diseases The University of Melbourne GPV CDSM Forum March 2010

2. Outline of presentation • What is health literacy and why is it important? • Gaps in the field • What is important to patients when seeking, understanding and utilising health information? 4. A new measure of health literacy

3. 1. What is health literacy and why is it important?

4. Health Literacy – definition for research Definition: “An individual’s capacity to seek, understand and utilise health information to make informed decisions about their own health” USA Department of Health & Human Services “Healthy People 2010”

5. Importance of health literacy Suboptimal health literacy associated with poorer health outcomes including: • Inadequate knowledge about health • Increased risk of hospitalisation • Poor access and utilisation of health services • Poorer self-reported health status De Walt DA, et al. Literacy and health outcomes: a systematic review of the literature. Journal of General Internal Medicine 2004:12:1228-39.

6. Importance of health literacy in context • Patient-centred care approach: • Provision of health information to patients • Active decision making • Partnerships between patients and health professionals • Emphasis on self-management Assumption • This approach assumes a minimum level of health literacy

7. 2. Gaps in the field

8. Definitions of health literacy Myriad of definitions: • “Health literacy includes the ability to perform basic reading and numerical tasks required to function in the healthcare environment (American Medical Association 1999) • “Health literacy represents the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”(World Health Organisation 1998) • “Health literacy is the ability to make sound health decisions in the context of everyday life” (Kickbusch, 2001)

9. How is health literacy measured? • Health literacy has been assessed through measuring reading ability and comprehension • 2 key measures: • Rapid Estimate of Adult Literacy in Medicine (REALM) • Test of Functional Health Literacy in Adults (TOFHLA)

10. REALM • Purpose • Identify individuals with limited reading skills in the primary care setting • Method • Patients read aloud a list of words • Scored on correct pronunciation • Scoring • Interview administered • Raw score is converted to a USA school grade estimate Davis, T.C., et al., Rapid Assessment of Literacy Levels of Adult Primary Care Patients. Family Medicine, 1991. 23(6): p. 433-35

11. REALM • 66 items Davis, T.C., et al., Rapid Assessment of Literacy Levels of Adult Primary Care Patients. Family Medicine, 1991. 23(6): p. 433-35

12. TOFHLA • Purpose • Measure functional health literacy in patients in the healthcare setting • Method • 2 domains: • Reading comprehension passage (insert word) • Numeracy section (interview administered) • Scoring • Score out of 100 (50:50 reading : numeracy) • Converted to three categories: adequate/marginal/inadequate health literacy Parker et al., The test of functional health literacy in adults: a new instrument for measuring patients’ health literacy skills. Journal of General Internal Medicine, 1995. 10: p. 537-541

13. TOFHLA (i) Reading ability (50 items) 1) Your doctor has sent you to have a _____________ X-ray. a. stomach b. diabetes c. stitches d. germs 2) You must have an _____________ stomach when you come for ______ . a. asthma a. is b. empty b. am c. incest c. if d. anaemia d. it Parker, R.M., et al., The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. J Gen Intern Med, 1995. 10(10): p. 537-41.

14. TOFHLA (ii) Numeracy (17 items) Abbocillin VK Tablets 250mg 50 Take ONE tablet by mouth four times a day Mr Ian Garfield nil Rpts 16/04/06 Dr Michael Lubin FF941858 $11.53 Q1. If you take your first tablet at 7.00am, when should you take the next one? ___________ Q2. And the next one after that? _____________

15. Considerations – health literacy measures • Content is narrow • Reading, comprehension, numeracy skills • Scoring categories not easily applied into a clinical context • Measures require interviewer • Majority of measures not based on a conceptual framework of health literacy

16. Definitions Seek, understand and utilise health information Cognitive and social skills Abilities to make sound health decisions Measures Reading comprehension Numeracy Mismatch between measure and definitions

17. 3. What is important to patients when seeking, understanding and utilising health information?

18. Methods: • Consultation with range of patient groups • Disease continuum • Healthcare setting • Socioeconomic status • Qualitative methods • In-depth interviews • 3 patient groups • Concept mapping workshops • 2 workshops with patients from low/high SES background

19. Results:participants (interviews)

20. Knowing when to seek health information: Broader factors Seeking Utilising • Healthcare system • Socioeconomic • Social support • Education • Cultural influences • Personal health attitudes Knowing where to seek health information: Literacy skills Verbal communication Understanding Assertiveness Capacity to retain and process health information Application skills Interview results: components of health literacy 7 key individual abilities Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Patient Education Counseling, epublication November 2009

21. Knowing where to seek health information “…knowing what’s available is very helpful. A lot of people don’t know all that is available to them. I probably don’t either but I have done a lot of community work and I have a fair idea of what’s available, …even just a list of specific places or counselling that is to do with disabilities or whatever…” [Female participant with a chronic condition] Abilities important in seeking health information • Knowing when to seek health information “…knowing where to go, where to get help from and probably understanding a little bit about the urgency…is this a really urgent problem? Am I going to be sitting in Casualty for six or eight hours or ten hours when I could just as easily make an appointment to see a doctor somewhere else tomorrow.” [Female participant with a chronic condition]

22. Abilities important in understanding health information • Literacy skills • Verbal communication • Assertiveness “I think that the hardest thing for any patient is trying to explain what it [the health problem] actually is because you’re not medically minded… I think that communication should be quite open…the doctor can’t tell what it is with you, unless you tell him [doctor] what it is…it comes down to straight out communication…” [Male participant, general population]

23. Application skills “Well at the moment…I have got seven or eight medicines to take every day and you’ve got to take this one an hour before food and another one with food…we start off at six o’clock in the morning and go ‘til eight o’clock at night…so that’s all day, all different hours, all different times and when am I going to do my ordinary things?” [Male participant, Emergency Department] Abilities important in utilising health information • Capacity to retain and process information “…my thyroid became overactive and that was a new thing that happened and it was quite a shock and I didn’t really fully understand exactly what was being told to me and I was also upset about it…if something gives me a shock or makes me feel very stressed…my brain doesn’t function very well…they need the capacity to mentally process the information…” [Female participant with a chronic condition]

24. ‘‘Sometimes they [doctors] come out with big words and I don’t know what to make of it…they don’t say stomach or belly, they say something else, abdominal. . .I don’t understand that’’ [Female participant presenting to RMH ED] ‘‘. . .when you’re sick, you haven’t got the strength. . .you don’t feel like talking, you don’t feel like doing anything. . .you’re just scared something will happen. . ..’’ [Female participant presenting to RMH ED] Broader factors that affect health literacy abilities • HEALTHCARE SYSTEM LEVEL: • Patient physical • and emotional disposition • Medical terminology • Use of different • information formats

25. ‘‘I needed to take my daughter with me so that she could also think on my behalf. . .I’ve got three children and one of them would come along and help interpret what I’m not getting the gist of the information’’ [Female participant with a chronic condition] ‘‘I find that services now are becoming very expensive…I can’t afford to do the things to help my body. . .my fibromyalgia is really playing up and I’m going to hydrotherapy and to the exercise program as an outpatient now. It was fine while I was an inpatient because I didn’t pay, but now, the hydro session is $7 and the exercise program is $15. . . I just don’t know how much longer I can sustain doing it. . .’’ [Female participant with a chronic condition] Broader factors that affect health literacy abilities • COMMUNITY LEVEL: • Lifestyle • commitments • Social support • Financial

26. Knowing when to seek health information: Broader factors Seeking Utilising • Healthcare system • Socioeconomic • Social support • Education • Cultural influences • Personal health attitudes Knowing where to seek health information: Literacy skills Verbal communication Understanding Assertiveness Capacity to retain and process health information Application skills Interview results: components of health literacy 7 key individual abilities Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Patient Education Counseling, epublication November 2009

27. What abilities does a person need to get and use all of the information they need to manage their health?” • Brainstorming session 2. Sorting and rating of statements 3. Multivariate analysis 4. Interpretation of maps Concept mapping workshops • Structured conceptualisation process

28. Results: participant demographics • Individuals with chronic condition from low SES area (n = 8) • Individuals from general community from high SES area (n = 7)

29. Participant statements – concept mapping • Able to deal with all the practical issues of doing the things you have been advised to do • Can afford transport to appointments • Know how to deal with the medical system to get what you need • Information on how to manage your illness • Able to use the local library • Confidence to ask questions of doctors • Good communication skills • Able to be assertive when this is necessary

30. Results: concept map (workshop #1)

31. Seeking health information Understanding health information Utilising health information Concept mapping results: 8 key themes • Patient attitudes towards health • Socioeconomic factors • Skills for sourcing health information • Access healthcare services • Verbal communication skills • Being proactive • Self-management skills • Social support

32. Consolidation of qualitative themes • Descriptive meta-matrices to consolidate abilities and factors identified

33. Conceptual framework of health literacy Jordan JE Jordan, J. E. (2009). Conceptualising and measuring health literacy from the patient perspective. PhD thesis, Department of Medicine (RMH/WH), The University of Melbourne. http://repository.unimelb.edu.au/10187/6776

34. Comparison of constructs and existing measures

35. 4. A new measure of health literacy

36. Purpose of new measure • Assess individual ability to seek, understand and utilise health information within the healthcare setting • Generic and potentially modifiable abilities and factors • Target population • Adult patients • Setting • Clinical or population

37. Key steps in development of measure (vii) Structural analysis (vi) Cognitive interviewing (v) Initial field testing (iv) Response (answer) format (iii) Item development (ii) Purpose of instrument (i) Conceptualisation of the phenomenon to be measured

38. Methods: • Initial field testing: • Test with relevant population groups • Patient with chronic conditions • Varied healthcare experiences • Refine the measure • Determine the measurement model • Use factor analysis to identify ‘best’ items • How well the model fits collected data • Validate the measure • Test with broader range of patient groups • Emergency Department • Patient with chronic conditions • Confirm the measure • Use factor analysis

39. Identify content areas for new measure Jordan JE Jordan, J. E. (2009). Conceptualising and measuring health literacy from the patient perspective. PhD thesis, Department of Medicine (RMH/WH), The University of Melbourne. http://repository.unimelb.edu.au/10187/6776

40. Construction of measure • Items generated from patient statements: • Concept mapping • In-depth interviews • Criteria established for writing items: • administered verbally or written • instant comprehension • Cognitive interviewing with patients

41. Health Literacy Management Scale (HeLMS) • 8 distinct scales • 5 focus on patient abilities to seek, understand and utilise health literacy • 3 focus on broader factors that affect abilities • 29 items

42. Scoring of the HeLMS • 5 point Likert-type scale • Focus on ‘difficulty’ experienced 5 = Without any difficulty 4 = With little difficulty 3 = With some difficulty 2 = Very difficult 1 = Unable to do

43. HeLMS Jordan JE Jordan, J. E. (2009). Conceptualising and measuring health literacy from the patient perspective. PhD thesis, Department of Medicine (RMH/WH), The University of Melbourne. http://repository.unimelb.edu.au/10187/6776

44. Results: Initial field testing • Individuals with chronic conditions (n =542) • 61% response rate (n = 333) • 75% female • Age range: 25 – 93 years • Predominantly Caucasian Factor analysis • Refine measure and exclude problematic items based on recognised criteria • 37 items across 8 distinct factors

45. #17 #24 #2 #18 #3 #31 #38 #4 #32 #56 #61 #45 #7 #15 #29 #33 #53 #1 #13 #6 #21 #14 #27 #28 #36 #39 #49 #8 #22 #9 #25 #10 #37 #44 #54 #57 #55 Psychometric properties of new measure Understanding health information Accessing GP healthcare services Using health information Patient attitudes towards health Social support Socioeconomic factors Communicating with health professionals Being proactive • Confirmatory Factor Analysis (CFA) • 8 latent variables which measure their respective constructs (37 items) • no cross-loadings • no within- and between-factor correlated errors • Program: MPlus version 5.0 • Root mean square error of approximation (RMSEA) = 0.08 • Comparative Fit Index (CFI) = 0.98 • Root Mean Square Residual (RMR) = 0.043

46. Results: validation • RMH ED patients and chronic condition (n = 700) • 50% response rate (n = 350) • 70% female • Age range: 23-94 years • Confirmatory factor analysis • 29 items • Good model fit: RMSEA = 0.07 SRMR = 0.051 CFI = 0.967 • Reliability (test-retest) • Intraclass correlation coefficient >0.7 for all 8 domains

47. 1. Patient attitudes towards health • This relates to an individual's motivation to manage their health. It assesses their ability to attend to their health needs as well as a willingness to change their lifestyle • 4 items: Are you able to: Find the energy to manage your health Pay attention to your health needs Make time for things that are good for your health

48. 2. Understanding health information • This domain focuses on an individual's ability to read and understand different formats of health information. • 4 items: • Are you able to: • Find health information in a language you understand • Fill in medical forms e.g. Medicare

49. 3. Social support • Social support refers to family, friends and broader community networks that assist individuals in enhancing their abilities to seek, understand and utilise health information • 4 items: • Are you able to: • Discuss your health with people other than a doctor • Take a family or friend with you to a doctor’s appointment

50. 4. Socioeconomic factors • This domain looks at broader socioeconomic circumstances of an individual to be able to access healthcare services and subsequently health information. • 3 items: • Are you able to: • Pay to see a doctor • Afford transport to medical appointments • Pay for medication you need to manage your health