Hahn Health Literacy, RIC Grand Rounds 11.09.11


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  • Newest Vital Sign (NVS), is an ice cream nutrition label that is accompanied by 6 questions (4 quantitative & 1-2 regarding peanut allergies) and requires 3 minutes for administration. Each question is scored as correct or incorrect.Q.1 above: 1,000 is the only correct answer
  • 12 original instruments & 7 derivatives (all interviewer-administered):REALM, TOFHLA, NVS, Medical Achievement Reading Test (MART), Short Assessment of Health Literacy for Spanish-speaking Adults (SAHLSA; based on the REALM-S, but also includes a comprehension test), Note: REALM & MART were modeled on the Wide Range Achievement Test (WRAT)
  • Modern health care systems use audiovisual, graphical and electronic media to present health information, assist in decision-making and collect self-report data.The use of new health information technologies is a recommended strategy for improving access to health information and for enhancing the quality of communication in health care delivery (Kreps et al, 2003). Despite advances in health information technology, many computer and multimedia tools remain inaccessible to many patients, particularly those with low literacy skills.
  • another approach is to assume that all patients benefit from improved communication and to implement universal precautions based on best practices
  • Cancer health Information Sources will be assessed at baseline and end of treatment. Items address whether or not a patient has used an information source (e.g., booklets, family, the Internet), how much that source was used and how helpful the source was. This measure will be useful for assessing possible variability in the control group.
  • Patient Preference in Patient-Provider Interaction is being assessed with the Control Preferences Scale (Degner et al., 1998), an adapted measure of the degree of control patients want to assume in their healthcare decisions. This measure has been validated with cancer patients and consists of portrayals of 5 different collaborative roles in medical decision-making, ranging from the patient making medical decisions alone to allowing physicians to make decisions alone. Patients will choose the role with which they are most comfortable. Patient preference is expected to be related to more or less interest and effort in acquiring knowledge about treatment and medical information, and will be assessed at baseline and end of treatment.
  • Hahn Health Literacy, RIC Grand Rounds 11.09.11

    1. 1. Health Literacy What is it? Why is it important? How should it be measured? What do patients think? Elizabeth A. Hahn Associate Professor Department of Medical Social SciencesFeinberg School of Medicine, Northwestern University e-hahn@northwestern.edu RIC Grand Rounds November 9, 2011
    2. 2. Learning Objectives1. Understand how health literacy is defined and measured2. Identify the relationships between low health literacy and poor health outcomes3. Evaluate strategies to overcome literacy barriers4. Develop strategies for using health literacy measures in research and clinical practice
    3. 3. Definition of Health LiteracyHealth literacy is “the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions.”It represents a constellation of skills necessary for people to function effectively in the health care environment and act appropriately on health care information. These skills include the ability to interpret documents, read and write prose (print literacy), use quantitative information (numeracy), and speak and listen effectively (oral literacy). Berkman et al. Health Literacy Interventions and Outcomes: An Updated Systematic Review. AHRQ Publication Number 11-E006. March 2011.
    4. 4. Why is it important? Results. Differences in health literacy were associated with increased hospitalizations, greater emergency care use, lower use of mammography, lower receipt of influenza vaccine, poorer ability to demonstrate taking medications appropriately, poorer ability to interpret labels and health messages, and, among seniors, poorer overall health status and higher mortality. Health literacy level potentially mediates disparities between blacks and whites. Conclusions. Future research priorities include justifying appropriate cutoffs for health literacy levels; developing tools that measure additional related skills (e.g., oral (spoken) health literacy); and examining mediators and moderators of the effect of health literacy. Priorities in advancing the design features of interventions include testing novel approaches to increase motivation, techniques for delivering information orally or numerically, “work around” interventions such as patient advocates; determining the effective components of already-tested interventions; determining the cost-effectiveness of programs; and determining the effect of policy and practice interventions Berkman et al. Health Literacy Interventions and Outcomes: An Updated Systematic Review. AHRQ Publication Number 11-E006. March 2011.
    5. 5. Measures of Health Literacy1. Word recognition2. Reading comprehension3. Numeracy
    6. 6. Word Recognition:Rapid Estimate of Adult Literacy in Medicine (REALM) (Davis et al., 1993) 1 2 3 fat fatigue allergic flu pelvic menstrual pill jaundice testicle dose infection colitis … … … bowel syphilis anemia asthma hemorrhoids obesity rectal nausea osteoporosis incest directed impetigo
    7. 7. Reading Comprehension:Test of Functional Health Literacy in Adults (TOFHLA) (Parker et al., 1995) Your doctor has sent you to have a _______________ x-ray. a. stomach b. diabetes c. stitches d. germs
    8. 8. Numeracy:Test of Functional Health Literacy in Adults (TOFHLA) (Parker et al., 1995) GARFIELD IM 16 Apr 93 FF941862 Dr. LUBIN, MICHAEL DOXYCYCLINE 100 mg 20/0 Take medication on empty stomach one hour before or two to three hours after a meal unless otherwise directed by your doctor. 02 11 (0 of 20) Interviewer: If you eat lunch at 12:00 noon, and you want to take this medicine before lunch, what time should you take it?
    9. 9. Numeracy:Newest Vital Sign (NVS) (Weiss et al., 2005) Interviewer: If you eat the entire container, how many calories will you eat?
    10. 10. Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol 2011;64:366-379 reviewed development, content and properties of 19 indices (originals and short-form derivatives; did not evaluate translated versions)  3 measurement approaches: direct testing of an individual’s abilities, self- report of abilities, and population-based proxy measures Findings:  underlying constructs and content varied widely  none appeared to fully measure a person’s ability to seek, understand, and use health information  content focused primarily on reading comprehension and numeracy  scoring categories were poorly defined  few indices had been assessed for reliability
    11. 11. Jordan JE, Osborne RH, Buchbinder R. Critical appraisal of health literacy indices revealed variable underlying constructs, narrow content and psychometric weaknesses. J Clin Epidemiol 2011;64:366-379 Conclusions:  health literacy is not consistently measured  this makes it difficult to interpret and compare health literacy at individual and population levels  empirical evidence demonstrating validity and reliability of existing indices is required  more comprehensive health literacy instruments need to be developed
    12. 12. Health Disparities Research Long-term goals: Develop interventions to prevent health disparities related to literacy, language and culture Short-term goals:  Develop literacy-, language- and culture-fair tools for patient- reported outcomes and patient education  Develop better health literacy measures  Validate these tools and measures in research and clinical settings 1999-2002, Evaluate patient attitudes & preferences (Coleman Found.) 1999-2004, Develop TT/PP (R01-HS010333, TURSG-02-069-01-PBP) 2005-2009, Develop TT/PP health literacy measure (R01-HL081485) 2007- , Test TT intervention in cancer care (R18-HS017300) 2010- , Test TT/PP intervention in diabetes care (R18-HS019335)
    13. 13. Research on Health Literacy Measurement A New Approach to Measurement of Health Literacy in English and Spanish (Hahn; R01-HL081485) Health Literacy Assessment Using Talking Touchscreen Technology (Health LiTT) (Yost et al., Patient Educ Couns 2009;J Health Commun 2010; Hahn et al., J Health Commun 2011)
    14. 14. Literacy and Technology Skills Required to Function Optimally as a Patient1 Literacy Technology Medical Oral Writing Reading Computers Multimedia Instruments Prose3 Listening2 (Understand and use information from texts) Document3 3Three types of scales defined for the 1992 National Speaking (Locate and use information from Adult Literacy Survey (NALS) and 2003 National forms, tables, graphs, etc.) Assessment of Adult Literacy (NAAL) Quantitative3 (Apply arithmetic operations usingBlue shading denotes areas of focus for R01-HL081485 numbers in printed materials)2 1Adapted from: Speaking of Health: Assessing Health Listening skills are needed to hear the recorded literacyquestions, but these skills will not be specifically measured Communication Strategies for Diverse Populations, 2002; and Health Literacy: A Prescription to End Confusion, 2004.
    15. 15. The Talking Touchscreen(Hahn, PI: AHRQ/NCI #R01-HS010333)Hahn et al., Psycho-Oncology 2004; Qual Life Res 2007 La Pantalla Parlanchina (Hahn, PI: ACS #TURSG-02-069-01-PBP) Hahn et al., J Oncol Manag 2003; Med Care 2010
    16. 16.  The sound is very helpful because I don’t read too good and listening to the recording really helps. It was easy to understand; it was fun. At the beginning, I thought I would not be able to do the surveys, but it turned out to be very easy. Helpful; gives you more privacy. It’s good that there’s a Spanish survey for patients who don’t speak English. Interesting; every clinic should have one. It’s about time that someone thought about doing something like this for us patients.
    17. 17. Health Literacy Study Rationale unclear at what level low health literacy begins to adversely affect health and health care utilization  this may be due to the lack of precision for categorizing individuals in the marginal health literacy category  improving measurement in the “middle zone” will help:  estimate the size of the population at risk from low health literacy  identify vulnerable patients within a clinical setting clinicians and researchers need precise, brief measures  that can be individually administered and scored in real-time  to enable tailoring for the patient’s health literacy level  to provide reliable & valid scores for use in testing interventions need to distinguish between Literacy and Language Barriers  English and non-English measures must yield equivalent information R01-HL081485
    18. 18. Definition of Health Literacy for Measurement Purposes Capacity Application Theoretical ActualRead and comprehendhealth-related print Apply health-relatedmaterial information to a Implement an health care situation appropriate decisionIdentify and interpret and understand what and related behaviorinformation presented an appropriate in the management ofin graphical format decision or behavior one’s own health SHOULD bePerform arithmeticoperations Capacity to obtain information (i.e., information-seeking) is a navigation skill that will not be included at this time. R01-HL081485
    19. 19. Item ExamplesHealth Literacy Assessment Using Talking Touchscreen Technology (Health LiTT) R01-HL081485
    20. 20. Patient Evaluation of Health LiTT (n=610 English-speaking primary care patients)Any difficulty using Not at all 93% the touchscreen? A little bit 6% Somewhat or quite a bit 1%Ever feel Not at all 86% uncomfortable, A little bit 11% anxious, nervous? Somewhat or quite a bit 3%Overall rating of Poor or Fair 4% screen design Good 24% Very Good 33% Excellent 39%Burden of 30 health Too many 14% literacy questions About right 58% (avg. 18 minutes) Could have answered more 28%Rating of study Worse than expected 2% participation About the same as expected 23% A little better than expected 28% A lot better than expected 47%
    21. 21. ###### | High Literacy ~ ~ Hard Items ########### | | | Need items | for high | | literacy ############ | | people | ########## | | | ########## | card10 Mean patient score→ | card7c | card8a ###### | card9 | ####### | card8b | card6 ##### | card3a card7b | ##### | card4 #### | | card3b card7a ←Mean item difficulty | ## | | ## | | card2 # | card5a card5b | | card1c | | card1a card1b | # | Low Literacy | Easy Items ~ ~# represents 18 people #### |
    22. 22. Item Response Theory Analysis Results (1-p model) ###~###~ ### ↑ (n=616 English-speaking primary care patients) | EIZ3Q5 High Literacy # | ECA4Q1 Hard Items ### | ### | #### | # represents 3 patients # | ########### | # | #### | EMH4P1 #### | EAS5Q1 EIN1Q4 ####### | EDB2D3 ##### | EAS2D2 EIC1Q3 ############ | ECA1P2 ECA3Q1 EIN1Q2 EIZ3P2 ######### | ECA5Q1 ########## | EIZ3Q4Mean Patient Score → ####### | EIZ2P1 EMD2Q3 ####### | ECA3Q2 EIN1Q8 ########## | EHT3D3 EIZ3Q1 EMD2Q2 ########## | ECA5D1 EOB2P2 EOB3D2 ####### | EIZ1P1 EMH1Q1 EOB3D1 ####### | EDB3Q1 #### | EMH3P1 EOB1P2 ← Mean Item Difficulty ######## | EAS5D2 ECA4Q2 EDB2D2 ####### | ECA1P1 ECA2P1 EDB5Q1 EIC1P10 EIN2P4 EIZ3D4 EIZ3Q2 EMH2D3 ####### | EDB4P4 EHT1P2 EHT3D4 EIZ3D1 EMD2D2 ##### | EAS2D1 EAS4P1 EDB2D1 EDB3P5 EDB5Q3 EHT1P6 EHT3Q1 EIN1D3 EIN1D7 EMH2P1 EOB3Q1 ### | EDB5P2 EOB5P5 ##### | EIC1P3 EIN1D1 EOB1P4 ### | EIN1Q10 EIN1Q5 EIZ3D3 EMD4D1 EMH5P1 EOB2P10 ### | EHT1P3 EIC1P7 #### | ECA4P1 EDB3D1 EDB3P1 EDB3P4 EIC1D2 EIN1D4 EOB5P2 ### | EDB5Q2 EIC1P8 EMD2D3 EOB2P4 ## | EAS5D1 EIC1P9 EIN2D3 ## | EIC3P8 | EDB3D2 Low Literacy | EHT2P1 EIN1Q9 Easy Items ~ EIC1P6 ↓ EAS1P1
    23. 23. Item Information and Reliability, and Distribution of Person Scores Estimated by the Final 2-PL Calibration Model (n=608 English-speaking primary care patients) 60 50 40 Information Prose 30 rel.=.95 20 rel.=.90 Document 10 Quantitative 0 20 30 40 50 60 70 80 PI: Hahn; R01-HL081485 T-Score Hahn et al., J Health Commun 2011
    24. 24. Health Literacy Screening in Clinical Practice? Depends on how the data are used. Screening can identify individual patient needs.  this may be especially valuable when comprehension of health information is critical (e.g., when patients need to make decisions regarding stem cell transplant or hospice care) Health literacy data aggregated at the clinic level can help identify what education materials and communication strategies are appropriate and gauge the effectiveness of practice changes after they are implemented. Garcia, et al. J Support Oncol 8:64-69, 2010.
    25. 25. Health Literacy Screening in Clinical Practice? To justify screening, several conditions must be met: 1. screening tests need to accurately and reliably detect limited literacy 2. the benefit of early treatment options to reduce adverse health outcomes must be proven and available 3. the benefits need to outweigh adverse effects of the program (U.S. Preventive Services Task Force, AHRQ, 2006) Risks: literacy screening programs could negatively impact patient care by promulgating fear and labeling Paasche-Orlow & Wolf. J Gen Intern Med 23:100-102, 2008.
    26. 26. What do patients think?
    27. 27. Agree that it is important for doctors/nursesto know about their patients’ reading abilities p=0.469 p=0.334 p=1.000 PI: Hahn; Coleman Foundation
    28. 28. Willing to have results of literacy surveygiven to my doctors and nurses p=0.697 p=0.157 p=0.189 PI: Hahn; Coleman Foundation
    29. 29. Many Patients Reported That They Learned Something by completing Health LiTT It was nice because it showed me and educated me on drug addiction, mammograms, and how to read charts. Very interesting; learned a lot. It was very interesting. It showed me about my diabetes and cancer and high blood pressure. Its very informative about different illnesses. It educates and teaches us how to take control of our health. Very informative; learned a lot of things I didn’t know about my health. PI: Hahn; R01-HL081485
    30. 30. Health LiTT Implications for Policy, Practice or Delivery A bilingual, computer-adaptive test of health literacy will enable clinicians and researchers to more precisely determine at what level low health literacy begins to adversely affect health and health care utilization. This tool will provide better opportunities to determine the independent effects of limited English proficiency and limited health literacy. By using novel computer-based methods for health literacy assessment, this tool will increase the access of underserved populations to new technologies, and contribute information about the experiences of diverse populations with new technologies.
    31. 31. Health Literacy Universal Precautions Toolkit AHRQ Publication No. 10-0046-EF, April 2010. http://www.ahrq.gov/qual/literacy/index.htmlWhat Are Health Literacy Universal Precautions? taking specific actions that minimize risk for everyone when it is unclear which patients may be affected e.g., health care workers take universal precautions when they minimize the risk of bloodborne disease by using gloves and proper disposal techniquesHow Can This Toolkit Help? Experts recommend assuming that everyone may have difficulty understanding and creating an environment where all patients can thrive. Research suggests that clear communication practices and removing literacy- related barriers will improve care for all patients, regardless of their level of health literacy. This toolkit is designed to help adult and pediatric practices ensure that systems are in place to promote better understanding by all patients, not just those you think need extra assistance.
    32. 32. Research on Patient-Centered Care Improving the delivery of patient-centered health information is especially important for vulnerable populations, e.g., patients with limited economic resources, low literacy skills or racial/ethnic minority status. These patients experience greater disease burden, are less informed about diagnosis and treatment, are less involved in disease management, are less likely to ask questions of providers, and are less likely to be satisfied with communication with their providers. Traditional patient education relies heavily on written material. However, these materials are often written at high reading levels with poor usability characteristics for patients with lower literacy. The use of new information technologies is a recommended strategy to improve access to health information and to enhance the quality of communication. We are conducting two research projects that are relevant to the overarching goal of Healthy People 2010 and 2020 of Eliminating Health Disparities.  the focus area of Health Communication and Health IT endorses the strategic use of communication and health information technology to improve health
    33. 33. Figure 1.1 Clinicians, patients, relationships (clinical and social), and health services are all integral topatient-centered care. The interactions among these elements are complex(Epstein et al, 2005) and deficits in anyone area can significantly decrease the quality of patient care. [from 2007 NCI/NIH Pub. #07-6225 “Patient-Centered Communication in Cancer Care”]
    34. 34. Strategies to Overcome Literacy Barriers Cancer Patient Education Software for English- speaking cancer patients: Cancer Care Communication (C3) (Hahn; R18-HS017300) Diabetes Patient Education Software for English- and Spanish-speaking patients with Type 2 Diabetes: Innovative Adaptation and Dissemination of AHRQ Comparative Effectiveness Research Products (iADAPT) (Hahn; R18-HS019335)
    35. 35. Radiation Therapy ExternalBeam
    36. 36. Chemotherapy How Given
    37. 37. Chemotherapy Intravenous
    38. 38. Patient Evaluation of CancerHelp-TT in Field Test (n=13 English-speaking cancer patients) Any difficulty using Not at all n=11 TT for questions? A little bit n= 2 Any difficulty using Not at all n=12 CancerHelp-TT? A little bit n= 1 Ever feel Not at all n=12 uncomfortable, A little bit n= 1 anxious, nervous? Overall rating of Very good n=12 screen design Excellent n= 1 Poor, Fair, Good --- Overall, how easy Very easy n=10 or hard to use? Easy n= 3 Hard, Very hard ---
    39. 39. Characteristics of Cancer PatientsEnrolled in C3 (n=127) (thru 10/15/11)Female 83%Age, years mean (SD) 52 (10) range 26 - 70Race, ethnicity Hispanic 22% Black, non-Hispanic 58% White, non-Hispanic 14% Other, non-Hispanic 6%
    40. 40. How much have you looked at bookletsor on the Internet for information abouthealth or cancer? (C3 Baseline, n=30) Booklets or Internet PamphletsNot at all 13% (n=4) 45% (n=13)A little bit 23% (n=7) 17% (n=5)Somewhat 23% (n=7) 7% (n=2)A lot 40% (n=12) 31% (n=9)
    41. 41. Adapted from Degner et al. J Nurs Meas. 1998; 6:137-153.
    42. 42. Baseline: <1% (n=1) 11% (n=12) 52% (n=58) 29% (n=33) 7% (n=8)
    43. 43. C3 Discussion and Implications Talking Touchscreen (TT) is a practical, user-friendly method for assessment of patient-reported outcomes CancerHelp® patient education program has been a valued resource since 1994 Purpose of integrating these two HIT applications: • to improve access to health information • to enhance the quality of health care communication CancerHelp®–TT: • meets security requirements in DHHS Automated Information Systems Security Handbook • programmed as a flexible, web-based research application that could be linked to an EMR system
    44. 44. Thanks to the agencies that funded this research: AHRQ, NCI, NHLBI, ACS, Coleman! Thanks to the dozens of co-investigators,collaborators, consultants and research staff who contributed to these projects!Thanks to all the patients and community members who participated in our research projects! What questions do you have?