Health Disparities and Health Literacy in Chronic Disease: The role of shared decision making

Transcription

1 Georgia O Keeffe, Lake George [formerly Reflection Seascape], 1922 Health Disparities and Health Literacy in Chronic Disease: The role of shared decision making Jennifer Barton, MD University of California, San Francisco March 7, 2014

2 Introductions 2

3 Objectives Review recent literature on health literacy and disparities Shared decision making and disparities Condition case history: rheumatoid arthritis Brief review of RA and disparities in RA Low literacy decision aid tool for RA Breakout Mock clinic visit using RA decision aid tool Feedback to group Conclusion 3

4 Adults with low literacy Poorer uptake of preventive services Poorer medical adherence Worse self-management skills Poorer health knowledge Increased medication errors Higher hospitalization rates and health care costs Higher rates of morbidity and mortality McCaffery, Smith, Wolf. Med Decis Making 2010;30:

5 Impact Health literacy influences outcomes at 3 critical points: 1. access to healthcare 2. interaction between patient and provider 3. self-care Nutbeam, D. Social Science & Medicine 67 (2008)

6 Disparities in technology use Are patient race and health literacy status associated with technology use? 283 adults with diabetes in TN 116 non-hispanic white (NHW) 167 black (AA) 79 with limited health literacy (LHL) AA as likely as NHW to use technology AA worse glycemic control Chakkalakal et al. Diabetes Care 2014;37:e

7 Technology use among adults with diabetes by race and health literacy own computer use internet for DM info Use internet for medication info n=283 n=116 n=167 n=79 n=201 Total NHW AA LHL adequate Chakkalakal et al. Diabetes Care 2014;37:e

8 Osteoarthritis Most common cause of disability in US Higher OA incidence and more severe symptoms among racial/ethnic minorities Self-management support programs associated with less pain, better function Limited research for patients with low literacy 8

9 Effects of a telephone OA selfmanagement program according to race and health literacy 3 arms OA intervention (OA) n=172 Health education (HE) n=171 Usual care (UC) n=171 Health literacy measure: REALM Intervention outcomes: Pain Mobility Walking and bending Self-efficacy Sperber et al. Health Education Research 2013;28(3):

10 Characteristics of 515 OA patients Variable Mean SD or % N 515 Age 60 ± 10 Race Black White 43% 54% At least some college 67% Self-report inadequate income 73% High (>60) REALM 70% OA duration 16 ± 12 Fair or poor health 32% BMI 31.8 (6.6) Sperber et al. Health Education Research 2013;28(3):

11 Differential effects by race and REALM Sperber et al. Health Education Research 2013;28(3):

12 Conclusions OA intervention Non-whites improved more than whites in mobility Why may minorities benefit more? Start off with worse symptoms Place greater value on non-medical approaches Inadequate support or exposure to self-mgt Minorities with lower literacy benefited most OA intervention was multi-modal (audio, phone, easy to read materials) May have started off with less information, less involved in their care Sperber et al. Health Education Research 2013;28(3):

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14 National priority - ACA National Quality Strategy: two of six aims Ensuring that each person and family are engaged as partners in their care. Promoting effective communication and coordination of care. Patient and family engagement 1 of 6 reforms with the greatest potential to eradicate disparities, reduce harm, and remove waste from the American healthcare system. National Quality Forum Report to Congress. National Strategy for Quality Improvement in Health Care. March, 2011.

15 Shared Decision Making a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient s values and preferences. Informed Medical Decisions Foundation Associated with improved outcomes Peek ME, et al. Soc Sci Med Jul;71(1):1-9. Wilson SR, et al. Am J Respir Crit Care Med Mar 15; 181(6): Decision aids positive effect on patient-practitioner communication increase people's involvement improve knowledge and realistic perception of outcomes Stacey D, et al. Cochrane Database Syst Rev Oct 5;(10).

16 5 Stages of SDM Understanding the condition and management Use plain language Avoid jargon Use active voice Large font Use illustrations, use narratives/anecdotes Understanding the consequences: risks, limitations, benefits, and uncertainties Use natural frequencies (1 in 100) Consistent denominator pictographs McCaffery, Smith, Wolf. Med Decis Making 2010;30:

17 5 stages of SDM cont. Identifying preferences Use of personal stories Participating in the decision Question prompt lists Ask Me 3 Implementing a shared decision BOTTOM LINE: need for more research in shared decision making among low literacy pts McCaffery, Smith, Wolf. Med Decis Making 2010;30:

18 Rheumatoid Arthritis Most common inflammatory arthritis Affects up to 1% of North Americans Significant disability, increased mortality $20 billion annual costs in U.S. Complex treatment choices Myasoedova et al. Arth Rheum 2010;62:6( ) Birnbaum et al. Curr Med Res Opin 2010;26:77-90

19 A vision from the past? Gaps in care persist 43-58% received care according to guidelines Benhamou et al J Rheum 2009;36: Harrold et al., Arthritis & Rheumatism 2012; 64(3):

20 Among Medicare managed care enrollees with RA between 2005 and 2008, 63% received a DMARD. JAMA, February 2, 2011 Vol 305, No. 5

21 D Disease Activity Score * Function (HAQ)* African American 4.4 ( ) 1.5 ( ) Hispanic 4.0 ( ) 1.5 ( ) Asian/Pacific Islander 4.2 ( ) 1.1 ( ) White 3.3 ( ) 1.0 ( ) p<0.01 p<0.01 *Adjusted for age, gender, education, disease duration, RF status, time from enrollment to first DAS-28 score, and medication use. African-Americans had significantly more pain than whites. Greater disability in Latinos and African Americans, though not statistically significant. J Rheum 2007;34:1475-9

22 Limited health literacy and RA Cross-sectional study of >6,000 patients: limited HL was independently associated with poorer function and poorer self-reported adherence Caplan et al. Arthritis Care & Research 2013 LHL associated with risk perception and willingness to take a disease-modifying anti-rheumatic drug Martin et al. BMC Med Inform Decis Mak Aug 12;13:89 Interaction between patient & provider: LHL associated with greater discordance on global assessments of disease activity Hirsh et al. J Rheumatol 2010 May;37(5):

23 Health literacy and RA Characteristics of 438 rheumatoid arthritis patients, grouped by limited health literacy v. adequate Total n=438 Limited HL (n=131) Adequate HL (n=307) Age, years 61 ± ± ± 13 NS Female gender 387 (88) 124 (95) 263 (86) p=0.006 Latino ethnicity (n=395) 113 (29) 53 (48) 60 (21) p<0.001 Education High school graduate or less 72 (16) 49 (37) 23 (7) p<0.001 Disease duration, years 23 ± ± ± 12 NS DMARD, synthetic 329 (75) 106 (81) 223 (73) p=0.067 Biologic use 207 (47) 52 (40) 155 (51) p=0.047 RA pain (0-100), higher=worse 34 ± ± ± 27 p<

24 Interventions patient education Systematic review of education interventions for low literacy w/ musculoskeletal conditions 6 studies, moderate level evidence Interventions: pamphlets, counseling, video, theatre, puppetry Small effects on knowledge (n=3) Self-efficacy (n=2) Anxiety (n=1) Challenges: including and engaging target population Lowe et al. Arthritis Care & Research 2013 DOI /acr

25 Shared Decision Making in RA 30% of adults with RA report poor communication around decision-making with their clinicians Factors associated with poorer communication: Latino ethnicity Limited English proficiency Lower education Limited health literacy Lower trust in physician Barton JL, Trupin L, Tonner C, Imboden J, Katz P, Schillinger D, Yelin E, under review

26 Shared decision making and HL RA Panel Characteristic n=275 n (%) or mean ± SD Age, years ± SD 64±11 Female 236 (86) Disease duration, years ± SD 26±11 Race White 227 (83) Latino 21 (8) Asian/Pacific Islander 15 (5) African American 4 (1) Other 8 (3) Limited Health literacy 39 (14) Less than high school education 14 (5) Depressive Symptomology GDS, mean ± SD (range) 2.5±2.7 (0-13) Proportion above cut-point for 13% significant depressive symptoms 1 Trust in physician, 90.9 (81.8, 98.2) (median, interquartile range) Barton et al., under review 26

27 Odds ratios for suboptimal communication in SDM among 275 rheumatoid arthritis patients Unadjusted Adjusted* odds ratio (95% CI) odds ratio (95% CI) Female 1.37 ( ) 1.29 ( ) Age, per 10 years 1.24 ( ) 1.14 ( ) Disease duration, years 1.01 ( ) 1.01 ( ) Patient global assessment (0-100) 1.02 ( ) 1.01 ( ) Nonwhite race/ethnicity 1.18 ( ) 1.02 ( ) Less than high school education 1.61 ( ) 1.28 ( ) Limited health literacy 2.88 ( ) 2.80 ( ) Trust in physician, low 5.22 ( ) 5.57 ( ) Bold face type indicates p<0.05. *Model adjusted for all variables shown. Hosmer-Lemeshow Goodness of Fit test: 2 (8) =4.7 p=0.79 Barton et al., under review 27

28 A step forward: Medication Summary Guides for Vulnerable Populations with RA

29 Project goals 1) Needs assessment with focus groups 2) Develop guides and decision aid 3) Pilot trial to test guides and decision aid

30 Low literacy materials: Guide to RA Medications > Fifth grade reading level > Visually engaging, actual patients > English, Spanish and Chinese 30

31 Low literacy decision aid: RA Choice For use in clinic visit Designed to foster discussion 5 issue cards: frequency, onset, cost, side effects, special considerations (e.g., pregnancy, TB) 31

32 Iterative process of decision aid development Figure adapted from LeBlanc with permission Barton et al, under review 32

33 33

34 Break out session 1 Clinical scenario Review materials (5 minutes waiting room ) Clinic visit 10 minutes Discuss reactions 10 minutes Present to larger group 20 minutes 34

35 Break out session 2 Divide up into groups of 5: Clinician Patient with rheumatoid arthritis Caregiver Scribe Observer/reporter (just listen!) 35

36 Clinical scenario Ms./Mr. Jones, age 45 High school graduate, cashier 2 children, low income Rheumatoid arthritis x 18 months Having a flare despite methotrexate 12 tender joints 14 swollen joints Difficulty brushing hair/teeth, tying shoes, changing daughter s diapers 36

37 Clinician script Ms. Jones, your rheumatoid arthritis is very active today and we need to discuss adding a new medication. These cards will help us talk about the options. Which issue related to the medicines would you like to discuss first? Hold up 3 cards tiled: how often, how soon, cost Let patient pick one and begin discussion 37

38 CollaboRATE measure How much effort was made to help you understand your health issues? How much effort was made to listen to the things that matter most to you about your health issues? How much effort was made to include what matters most to you in choosing what to do next? Responses: 0 no effort at all 1 a little effort was made 2 some effort was made 3 a lot of effort was made 4 every effort was made Barr PJ, et al. J Med Internet Res 2014;16(1):e2 38

39 Feedback What was interaction like overall? Did you feel the tool helped generate a conversation? In what ways was the interaction similar to your experience in a clinic visit? In what ways was the interaction different? 39

40 Methods: Trial design ARM 1 Pre-Clinic Clinical encounter Usual care ARM 2 Usual care ARM 3

41 Study enrollment ( ) 345 screened for eligibility* 166 Enrolled 111 low disease activity 68 declined Existing guide 58 Adapted guide Adapted guide + decision aid month follow-up *eligible = one of the following: >65, minority, immigrant, limited health literacy, non-english

42 Pilot trial: Outcome Measures Primary: RA knowledge (range 0-8) Decisional conflict scale* (range 0-100) Secondary (measured at 3 months): Self-reported adherence Trust in physician (range 0-100) change in disease activity (CDAI) from baseline to 3 months Analysis: generalized linear models and logistic regression *O Connor et al. Med Decis Making 1995;15:25-30

43 Patient characteristics Characteristic Total (n=166) N(%) or mean ± SD Female* 146 (88) Age, mean ± SD 58 ± 12 Chinese English Spanish 30 (18) 76 (46) 60 (36) County clinic 110 (66) Immigrant 114 (69) High school or less 80 (52) Limited health literacy 110 (71) *significant difference across arms, p=

44 Primary outcome: Decisional conflict Decisional conflict scale Lower score = less conflict Range * Arm 1 (n=24) Arm 2 (n=28) Arm 3 (n=29) Study Arm * p<0.05 compared to Arm 1, controlling for gender and clinic

45 Primary outcome: Adequate RA Knowledge RA Knowledge Score 7 of 8 correct * p<0.05 compared to Arm 1, controlling for gender and clinic

46 Sensitivity Analysis: Disease Activity CDAI: Score change since intervention visit DA not used (n=24) 1/2 standard deviation of distribution of CDAI DA used (n=8) -12 * * p<0.05

47 Conclusions of RA Choice pilot trial Low literacy tools increase knowledge & decrease decisional conflict and may improve disease activity Decision aid improved quality of the decision making process for vulnerable populations with RA Enhanced patient involvement has potential to improve outcomes

48 Available April 2014 English/Spanish 48

49 What questions do you have? 49

50 Conclusions Disparities in outcomes in chronic disease persist Interventions may have greatest impact on minority populations with limited literacy Shared decision making may have the potential to reduce disparities Low literacy decision support tools and interventions need to be developed and tested Intervention studies must be designed to evaluate the impact by both race and literacy level 50

51 Thank you Ed Yelin Dean Schillinger John Imboden Hilary Seligman Victor Montori (Mayo Clinic) Terry Davis (LSU) UCSF RA Patient Advisory Board Gina Evans-Young Laura Trupin Timothy Morse, Maggie Breslin (designers) Clinicians and staff at UCSF/SFGH Funding: AHRQ, ACR RRF Bridge Funding Award, NIH P60, Pfizer Aspire Award, ACP Foundation/Arthritis Foundation 51

52 Addendum I DCS Scale 52

53 Addendum II RA Specific Knowledge Questions 1. Once you have rheumatoid arthritis, how long does it last? a. For 6 months b. For 3 weeks c. For a few days d. For life Mark the following sentences as true (T) or false (F): 2. Medicines can cure rheumatoid arthritis. 3. Medicines are the main treatment for rheumatoid arthritis. 4. Rheumatoid arthritis can affect the eyes. 5. RA medicines can be taken as a pill, a shot or in the vein. 6. RA medicines can never be combined. 7. RA medicines decrease swelling in joints and relieve pain. 8. Most people only need RA medicines for a couple of days. 53