Consequences of Inadequate Functional Health Literacy Can be divided into 7 categories: Decreased knowledge and comprehension Poorer compliance rates Lack of understanding and use of preventive health services Poorer self-reported health Poorer health status Increased hospitalizations ? Increased health care costs

Decreased knowledge and comprehension Hypertension and diabetes 402 patients with hypertension and 114 patients with diabetes at two urban public hospitals (Grady, UCLA) Knowledge questionnaire: normal and levels, lifestyle modifications, drugs, symptoms and complications TOFHLA - 49% and 44%, respectively, had inadequate FHL Functional health literacy was strongly associated with knowledge of illness

Decreased knowledge and comprehension Hypertension and diabetes – con’t Patients with inadequate literacy were less likely to know: Blood pressure of 130/80 is normal (p<0.001) Blood pressure of 160/100 is high (p<0.001) Exercise lowers BP (p<0.001) Canned vegetables are high in salt (p=0.001) Losing weight lowers BP (p<0.001) Normal blood glucose level is between (p=0.003) If you feel shaky, sweaty and hungry, it usually means your blood glucose is low (p=0.001)

Decreased knowledge and comprehension Asthma 483 patients with asthma at ER and asthma clinic at Grady 20-item questionnaire to assess asthma knowledge and ability to properly use an MDI REALM – 40% <6 th grade reading level Poor literacy correlated with poor knowledge of asthma and improper MDI technique, even after adjusting for education and other sociodemographic variables (p<0.01)

Decreased knowledge and comprehension HIV/AIDS 228 patients with HIV or AIDS TOFHLA -18% had inadequate functional health literacy Patients with inadequate functional health literacy were less likely to understand the meaning of their CD4 counts, viral load tests, and were more likely to have misconceptions about HIV therapy and safe sex practices (p<0.01)

Poorer compliance rates Antiretroviral therapy 182 HIV/AIDS patients in the community taking triple-drug antiretroviral therapy TOFHLA adapted to be relevant to HIV population Lower TOFHLA scores were found to be a predictor of noncompliance with antiretroviral drugs during the previous 2 days after adjusting for age, ethnicity, income, HIV symptoms, substance abuse, social support, emotional distress and attitudes toward primary care providers (OR 3.9 [1.1, 13.4])

Poorer compliance rates Antiretroviral therapy – con’t Individuals with lower literacy were more likely to indicate that the reasons for non-compliance with antiretrovirals were: Being confused (p<0.01) Feeling depressed (p<0.05) Wanting to cleanse their body (p<0.05)

Lack of understanding and use of preventive health services Mammography I 445 low-income, low-literate predominantly African-American women at outpatient clinics LSU who had not had a mammogram in the previous year REALM – 47% had less than 7 th grade literacy level Lower reading ability correlated significantly with less mammography knowledge (p<0.0001) Of those who read at the 3 rd grade level or less, 61% did not know why mammograms were recommended, compared with 88% of those who read at a high school level or higher (p<0.0001)

Lack of understanding and use of preventive health services Mammography II 126 Latinas attending 3 community clinics in Philadelphia STOFHLA -31% had inadequate and 18% had marginal literacy Literacy was not related to knowledge about mammography (p=1.00), starting age (p=1.00) or frequency (p=0.57) Socioeconomic differences (income as surrogate?) Cultural differences? Availability of community services?

Lack of understanding and use of preventive health services Colorectal Cancer Screening 126 patients over age 50 attending 3 community and 2 university-based primary care practices in Philadelphia STOFHLA Patients with adequate literacy were more likely to have -heard of FOBT (p<0.001) -heard of sigmoidoscopy or colonoscopy (p<0.001) -know the correct starting age (p<0.001) -know correct frequency of sigmoidoscopy (p<0.0001) and colonoscopy (p<0.01) Patients with adequate literacy were more likely to have had a FOBT (p=0.006), sigmoidoscopy or colonoscopy (p<0.0001)

Lack of understanding and use of preventive health services Vaccines/Mammogram/Pap in older patients 2722 Medicare patients age in an HMO in 4 cities STOHFLA After adjustment for sociodemographic variables and health status, patients with inadequate literacy had higher rates of: -never had influenza vaccination (p=0.000) -no mammogram in the previous 2 years (p=0.17) -never had a pap smear (p=0.002)

Poorer self-reported health 2659 patients at Grady and UCLA TOFHLA Patients with inadequate functional health literacy were 2x more likely to report their health as poor at all both sites regardless of spoken language

Poorer health status Type II diabetes 408 pts at 2 primary care clinics at SF General Hospital STOFHLA, hemoglobin A1C levels and complications of diabetes Patients with inadequate functional health literacy were less likely to have tight glycemic control (hemoglobin A1C 9.5%, adjusted OR 2.03, 95% CI , p=0.02) For each 1-point decrement in STOFHLA score, the hemoglobin A1C value increased by 0.02 (p=0.02)

Poorer health status Type II diabetes – con’t Patients with inadequate functional health literacy were more likely to have retinopathy (adjusted OR 2.22, 95% CI , p=0.01) Inadequate functional health literacy was also associated with other complications of diabetes, but the associations did not reach statistical significance

Poorer health status HIV/AIDS 228 patients with HIV or AIDS TOFHLA Patients with adequate health literacy were significantly more likely to have undetectable viral loads (p<0.05)

Poorer health status Prostate Cancer 212 men at a prostate cancer clinic REALM Lower literate men were more likely to have advanced stage prostate cancer at presentation than those with higher reading abilities (p=0.02) even after adjusting for race, age and study site.

Poorer functional health status 193 primarily younger patients from a publicly funded literacy training program Test of Adult Basic Education/Mott Basic Language Skills Program – mean reading level was grade 7.17 Sickness Impact Profile (SIP): 136 items covering 12 categories of daily activity including mobility, body function and self-care, social interaction, communication, emotional behavior, work Mean physical, psychosocial and total SIP scores were significantly related to reading level, even after adjusting for potential confounding variables (p<0.002, p<0.02, p<0.02, respectively)

Poorer health status Comorbidity burden and physical and mental health status 1301 patients at 4 community and 1 university-based primary care practices STOFHLA Charlson Comorbidity Index (CCI) SF-12: PCS-12 and MCS-12 After adjusting for confounders, functional health literacy remained a significant positive predictor of CCI score (p=0.0006) Functional health literacy was not a significant predictor of physical or mental health as measured by the SF-12

Increased hospitalizations 958 low-income patients at ERs and walk-in clinics TOFHLA Hospital information system used to retrospectively determine number of hospitalizations and visits to walk-in clinic in the previous 2-year period Patients with inadequate health literacy were twice as likely to be hospitalized compared with those who with marginal or adequate health literacy (31.5%, 16.4% and 14.9%, respectively, p<0.001), even after adjusting for health status and various sociodemographic indicators.

Increased health care costs 402 Medicaid recipients enrolled in a state- directed managed care plan in Arizona and receiving care through one providing practice Instrument for the Diagnosis of Reading (IDL) – mean reading level grade 5.6 (s.d. 2.7) Charges assessed included hospital, physician and ancillary charges for services rendered on-site or off-site After adjusting for confounding sociodemographic variables, no significant relationship between reading level and cost of medical care over 1 year (p=0.43)

Increased health care costs Con’t Medicaid population inherently controls for income and employment status. However, this study did not control for number or type of comorbidity. Low literate patients may have a greater number or more severe comorbidities yet underuse medical care because of access and navigation barriers, poorer compliance or a sense of lack of self- empowerment. More research is needed on the impact of low literacy and health care costs

Summary Inadequate functional health literacy is associated with: poorer knowledge about disease poorer compliance with therapy inadequate knowledge and use of preventive services poorer health outcomes increased hospitalizations ? health care costs

Summary The mechanism for poorer health in patients with inadequate literacy is likely multifactorial and includes increased difficulty with: applying for and navigating the health care system understanding and communicating with provider understanding management of disease understanding medication and test instructions compliance perceiving need for preventive services

What can we do? Acknowledge that the problem exists: be aware of the prevalence and consequences Identify individuals in your practice Assist those with reading difficulties: -verify their understanding by asking them to repeat instructions back to you -verify they are taking their medications as prescribed -use low-literacy educational material available from many government agencies, National Institute for Literacy, AHA, ACS, and many other agencies -suggest referral to literacy center

Acknowledgement Funding/Support Agency for Health Care Quality and Research, Minority Supplement to Grant # R01 HS FOCUS on Health & Leadership for Women, Clinical Investigator Award Mentorship Judy A. Shea, PhD Research Assistants Megan Krumholz Francisco Dominguez, MD