Informal Caregiver Assistance among Adults with Cardiovascular Disease

Informal Caregiver Assistance among Adults with Cardiovascular Disease in Ohio Deborah A. Levine, MD, MPH Assistant Professor of Medicine Division of General Internal Medicine Division of Health Services Management & Policy The Ohio State University

Co-Investigators • • • Sudeep Karve, Ph. D Eric Seiber, Ph. D Al Dembe, Sc. D Andrew Slivka, MD Bo Lu, Ph. D

Cardiovascular Disease (CVD) in Ohio • Leading cause of death in the US and Ohio accounting for 35 -40% of deaths • Prevalence is increasing in US and Ohio • Self-reported prevalence of CVD in Ohio adults (OFHS 2008) – – Heart attack (5. 4%) Coronary heart disease (6. 3%) Stroke (3. 5%) Congestive heart failure (3. 0%) • Effect of CVD prevalence on use and costs of health care and non-health care services are unknown

CVD and Caregiver Assistance • CVD associated with increased: disability, need for home and community-based services and caregiver assistance, even long-term • Caregiver assistance may have adverse effects on caregiver, health care system, and employers • Caregiver assistance important for adult Medicaid recipients with CVD • Amount and cost of caregiver assistance for adults with CVD in Ohio are unknown

Study Aims • To assess current prevalence of informal caregiver assistance for adults reporting a history of CVD for the state of Ohio. • To determine whether caregiver assistance for adults with CVD is higher among the four priority CVD populations for the state of Ohio: men, African. Americans, Appalachians, and those living in poverty. • To estimate the cost of caregiver assistance for adults with CVD in Ohio using 2007 US Bureau of Labor Statistics wage rates. • To estimate the amount and cost of caregiver assistance for adults with CVD in Ohio who are Medicaid recipients.

Methods: Patient Population • Ohio Family Health Survey 2008 • 7, 040 adults aged ≥ 18 years with history of CVD (heart attack, coronary heart disease, stroke or congestive heart failure (CHF)) • 42, 681 adults aged ≥ 18 years without CVD • Compared amount of self-reported informal caregiver assistance, measured in mean hours person per month, by CVD status

Methods: Outcome Definition • Caregiver assistance: “currently need any of the following types of assistance [because of health problems]” – – – – • Assistance with personal care (hygiene, feeding) Domestic assistance (housekeeping, transportation) Help with household maintenance (painting, yard work) Social or emotional support (companionship, recreation) Coordinating health care (making medical appointments) Assistance managing financial affairs Other kinds of assistance “How many hours of assistance do you currently require on average for the types of assistance that were just mentioned? ”

Methods: Analysis • Two-part regression model – First part: logistic regression models estimated the probability of reporting informal caregiver assistance for respondents with and without CVD, before and after adjusting for covariates – Second part: ordinary least squares regression examined the association of CVD category with natural logarithm of informal caregiver assistance hours per month for respondents who reported any informal caregiver assistance – Combined results of two models to obtain an estimate of the average effect of CVD on monthly hours of informal caregiver assistance required person (unconditional effect of CVD) – Regression model results were retransformed to hours • Statistical analysis: STATA – Complex sampling design – Weighted results

Methods: Regression Model Dependent Variable Main Independent Variable Main Covariates • Informal caregiver Primary: assistance • CVD vs. No CVD Secondary: • Stroke + CHF (± CHD) • Stroke w/o CHF (± CHD) • CHF ± CHD • CHD only • No Cv. D • Age • Sex • Race/ethnicity • Region • Income • Education • Marital status • No. adults in house • Health insurance • Co-morbidity* • Health status • No. hospitalizations *Co-morbidity included hypertension, diabetes, cigarette smoking

Methods: Cost Analysis • • Used market price of equivalent service/worker to estimate opportunity cost for the time of an informal caregiver Estimated the annual cost of informal caregiver assistance attributable to CVD: – Multiplied the adjusted monthly hours of informal caregiver assistance person attributable to CVD by the 2007 US Bureau of Labor Statistics median wages for a home health aide ($9. 15/hour) – Multiplied by 12 (months per year) – Multiplied by the population estimate of the number of adults Ohioans with CVD in 2008 – Repeated analysis for recipients of any Medicaid and recipients of Medicaid and Medicare

CVD Prevalence in Ohio, Overall and by Age Group, 2008 Age Group n (%) Population Estimate Age ≥ 18 years (overall) 7, 040 (10%) 889, 890 Age 18 -44 years 425 (11%) 100, 765 Age 45 -64 years 2, 674 (40%) 358, 598 Age ≥ 65 years 3, 941 (48%) 430, 527

Characteristics of Adults with CVD in Ohio, 2008 CVD n=7040 No CVD n=42681 Age ≥ 65 years 48% 14% Men 53% 36% Non-Hispanic white Non-Hispanic black Hispanic 85% 11% 1% 85% 11% 2% Education

Characteristics of Adults with CVD in Ohio, 2008 CVD n=7040 No CVD n=42681 51% 13% No. of hospitalizations (mean) 0. 63 (0. 022) 0. 17 (0. 004) No. of ER visits (mean) 0. 84 (0. 037) 0. 37 (0. 008) Hypertension 74% 29% Diabetes 35% 10% Respondent Characteristic Fair or poor health status

Characteristics of Adults with CVD in Ohio, 2008 CVD n=7040 No CVD n=42681 Medicaid and Medicare 8% 2% Medicaid, no Medicare 6% 6% Medicare, no Medicaid 50% 15% Private 24% 59% Other 3% 3% Uninsured 9% 15% Health Insurance

Percentage of Adults with Cardiovascular Disease (CVD) Reporting Informal Caregiver Assistance in Ohio, Overall and by Age, 2008 Age Group Age ≥ 18 years (overall) % (95% CI) Population Estimate 47% (45%-49%) 352, 240 Age 18 -44 years 49% (41%-57%) 33, 783 Age 45 -64 years 45% (42%-48%) 139, 961 Age ≥ 65 years 48% (46%-51%) 178, 496

Percentage of Adults with Cardiovascular Disease Reporting Informal Caregiver Assistance in Ohio by Type of Cardiovascular Disease, 2008

Percentage of Adults with Cardiovascular Disease Reporting Informal Caregiver Assistance in Ohio, by Gender and Age, 2008 Age Group Age ≥ 18 years (overall) Men (n=2597) % (95% CI) Women (n=4083) % (95% CI) 40% (37%-43%) 55% (52%-57%) Age 18 -44 years 46% (35%-57%) 53% (43%-63%) Age 45 -64 years 39% (35%-43%) 53% (49%-57%) Age ≥ 65 years 40% (36%-44%) 56% (53%-59%)

Percentage of Adults with Cardiovascular Disease Reporting Informal Caregiver Assistance in Ohio, by Race/Ethnicity, 2008 Non-Hispanic Whites n=5745 45% (43%-47%) Non-Hispanic Blacks n=861 58% (53%-64%) Other Racial/Ethnic Hispanics Groups n=87 n=165 58% 63% (47%-70%) (52%-75%)

Percentage of Adults with Cardiovascular Disease Reporting Informal Caregiver Assistance in Ohio, by Region, 2008 Appalachia n=1825 Metropolitan n=2980 Rural n=1488 Suburban n=747 52% (48%-56%) 48% (46%-51%) 41% (38%-45%) 42% (38%-48%)

Percentage of Adults with Cardiovascular Disease Reporting Informal Caregiver Assistance in Ohio, by Poverty Level, 2008

Cost of Informal Caregiver Assistance Attributable to Cardiovascular Disease (CVD) among Adults in Ohio, 2008 Row Variable 1 2 3 Number (95% CI) Adjusted hours of informal caregiver assistance person per month for adults aged ≥ 18 years with CVD, in hours person per month (95% CI) 15. 74 (13. 96 -17. 52) Adjusted hours of informal caregiver assistance person per month for adults aged ≥ 18 years without CVD, in hours person per month (95% CI) 9. 98 (9. 14 -10. 82) Adjusted monthly hours of informal caregiver assistance attributable to CVD, in hours person per month (row 1 minus row 2) 5. 76 (4. 82 -6. 70) *Adjusted for age, gender, race/ethnicity, region, poverty level, education, marital status, number of adults in household, health insurance, co-morbidity, health status, and number of hospitalizations in last year.

Cost of Informal Caregiver Assistance Attributable to Cardiovascular Disease (CVD) among Adults in Ohio, 2008 Row Variable 3 Adjusted monthly hours of informal caregiver assistance attributable to CVD 4 Hourly rate for home health aide (2007) 5 6 7 8 Number (95% CI) 5. 76 (4. 82 -6. 70) $9. 15/hr Monthly cost of informal caregiver assistance attributable to CVD, in dollars person per month (2008) (row 3 multiplied by row 4) $53 ($44 -$61) Yearly cost of informal caregiver assistance attributable to CVD, in dollars person per year (2008) (row 5 multiplied by 12 months/yr) $632 ($529 -$736) Population estimate of OH adults with CVD (2008) Yearly cost of informal caregiver assistance for adults with CVD 889, 890 $563 million ($471 -$655 mi)

Adult Medicaid Recipients with CVD • Approximately 120, 000 adults with CVD are recipients of Medicaid of whom 65% report informal caregiver assistance. • The average yearly cost of informal caregiver assistance attributable to CVD was $694 person. • Approximately 71, 000 adults with CVD are recipients of Medicaid and Medicare of whom 65% report informal caregiver assistance. • The average yearly cost of informal caregiver assistance attributable to CVD was $1471 person.

Type of Informal Caregiver Assistance among Adults Reporting Help with Only One Activity CVD No CVD Household maintenance 60% 52% Domestic assistance 20% 12% Social or emotional support 10% 20% Managing financial affairs 6% 8% Coordination of health care 4% 6%

Limitations • Self-report of informal caregiver assistance may underestimate infrequent assistance • Self-report of CVD • Severity of CVD, onset of CVD, quality of CVD care, dementia, rehabilitation cannot be assessed • Limited to community-dwelling adults • No direct measure of caregiver assistance by type, provider, or disease (due to CVD or other condition) • Cost estimates used median hourly wage for a home health aide but some informal care may or may not be performed by a home health aide (e. g. , social/emotional support)

Conclusions • Informal caregiver assistance for adults with CVD in Ohio is substantial and costly. • Approximately 50% of community-dwelling adult Ohioans with CVD report informal caregiver assistance. • Priority CVD populations reported more informal care: – – Non-Hispanic blacks Hispanics Appalachians Adults living in poverty • Stroke and CHF had highest rates of informal care. • Estimated 2008 annual cost of informal caregiver assistance attributable to CVD was $563 million for Ohio.

Policy Implications • Expand or more efficiently allocate resources to provide home and community-based care. • Assess availability and quality of current resources and programs to provide home and community-based care, particularly for the elderly. • Develop and implement programs to identify care needs. • Focus on vulnerable populations (non-Hispanic blacks, Hispanics, those living in Appalachia, those living in poverty, the elderly, women) who may require ancillary health care and social services. • Coordinate home-based and community resources across agencies. • Streamline the applications for services by patients and their caregivers.

Policy Implications To address caregiver burden: • Ensure adequate availability and duration of family medical leave for employed caregivers. • Increase the availability and health insurance coverage of respite care. • Ensure the availability and health insurance coverage of counseling and support services.

Acknowledgements • Melissa Senter, MA, MPH • Rosemary Duffy, DDS, MPH • Barry Jamieson, MA • Find full report at: http: //grc. osu. edu/ofhs