@article {7010, title = {Net worth predicts symptom burden at the end of life.}, journal = {J Palliat Med}, volume = {8}, year = {2005}, month = {2005 Aug}, pages = {827-37}, publisher = {8}, abstract = {

OBJECTIVES: To explore the predictors of symptom burden at the end of life.

DESIGN: Observational, secondary analysis of Health and Retirement Study (HRS) data.

SETTING: USA.

PARTICIPANTS: Two thousand six hundred four deceased, older adults.

METHODS: Multivariate Poisson and logistic regression to explore the relationship between sociodemographic and clinical factors with symptoms.

RESULTS: Fatigue, pain, dyspnea, depression, and anorexia were common and severe; 58\% of participants experienced more than 3 of these during their last year of life. Sociodemographic and clinical factors were associated with the number of symptoms as well as the presence of pain, depression, and dyspnea alone. Decedents in the highest quartile of net worth had fewer symptoms (incident rate ratio [IRR] 0.90, confidence interval [CI] 0.85-0.96) and less pain (odds ratio [OR] 0.66, CI 0.51-0.85) than comparisons did. Patients with cancer experienced more pain (OR 2.02, CI 1.62-2.53) and depression (OR 1.31, CI 1.07-1.61). Patients experienced more depression (OR 2.37, CI 1.85-3.03) and dyspnea (OR 1.40, CI 1.09-1.78).

LIMITATION: Use of proxy reports for primary data.

CONCLUSION: Older Americans experience a large symptom burden in the last year of life, largely with treatable symptoms such as pain, dyspnea, and depression. The adequacy of symptom control relates to clinical factors as well as net worth. This association between symptoms and wealth suggests that access to health care and other social services beyond those covered by Medicare may be important in decreasing symptom burden at the end of life.

}, keywords = {Aged, Aged, 80 and over, Data collection, Female, Humans, Logistic Models, Male, Severity of Illness Index, Social Class, Terminally Ill, United States}, issn = {1096-6218}, doi = {10.1089/jpm.2005.8.827}, author = {Maria J Silveira and Mohammed U Kabeto and Kenneth M. Langa} } @article {6793, title = {A national study of the quantity and cost of informal caregiving for the elderly with stroke.}, journal = {Neurology}, volume = {58}, year = {2002}, month = {2002 Jun 25}, pages = {1754-9}, publisher = {58}, abstract = {

BACKGROUND: As the US population ages, increased stroke incidence will result in higher stroke-associated costs. Although estimates of direct costs exist, little information is available regarding informal caregiving costs for stroke patients.

OBJECTIVE: To determine a nationally representative estimate of the quantity and cost of informal caregiving for stroke.

METHODS: The authors used data from the first wave of the Asset and Health Dynamics (AHEAD) Study, a longitudinal study of people over 70, to determine average weekly hours of informal caregiving. Two-part multivariable regression analyses were used to determine the likelihood of receiving informal care and the quantity of caregiving hours for those with stroke, after adjusting for important covariates. Average annual cost for informal caregiving was calculated.

RESULTS: Of 7,443 respondents, 656 (8.8\%) reported a history of stroke. Of those, 375 (57\%) reported stroke-related health problems (SRHP). After adjusting for cormorbid conditions, potential caregiver networks, and sociodemographics, the proportion of persons receiving informal care increased with stroke severity, and there was an association of weekly caregiving hours with stroke +/- SRHP (p < 0.01). Using the median 1999 home health aide wage (8.20 dollars/hour) as the value for family caregiver time, the expected yearly caregiving cost per stroke ranged from 3,500 dollars to 8,200 dollars. Using conservative prevalence estimates from the AHEAD sample (750,000 US elderly patients with stroke but no SRHP and 1 million with stroke and SRHP), this would result in an annual cost of up to 6.1 billion dollars for stroke-related informal caregiving in the United States.

CONCLUSIONS: Informal caregiving-associated costs are substantial and should be considered when estimating the cost of stroke treatment.

}, keywords = {Aged, Aged, 80 and over, Caregivers, Confidence Intervals, Female, Humans, Longitudinal Studies, Male, Multivariate Analysis, Stroke, United States}, issn = {0028-3878}, doi = {10.1212/wnl.58.12.1754}, author = {Hickenbottom, S.L. and A. Mark Fendrick and Kutcher, J.S. and Mohammed U Kabeto and Steven J. Katz and Kenneth M. Langa} } @article {6738, title = {National estimates of the quantity and cost of informal caregiving for the elderly with dementia.}, journal = {J Gen Intern Med}, volume = {16}, year = {2001}, month = {2001 Nov}, pages = {770-8}, publisher = {16}, abstract = {

OBJECTIVE: Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia.

DESIGN: Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people age 70 years or older (N = 7,443).

SETTING: National population-based sample of the community-dwelling elderly.

MAIN OUTCOME MEASURES: Incremental weekly hours of informal caregiving and incremental cost of caregiver time for those with mild dementia, moderate dementia, and severe dementia, as compared to elderly individuals with normal cognition. Dementia severity was defined using the Telephone Interview for Cognitive Status.

RESULTS: After adjusting for sociodemographics, comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P < .001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P < .001), respectively. The associated additional yearly cost of informal care per case was 3,630 dollars for mild dementia, 7,420 dollars for moderate dementia, and 17,700 dollars for severe dementia. This represents a national annual cost of more than 18 billion dollars.

CONCLUSION: The quantity and associated economic cost of informal caregiving for the elderly with dementia are substantial and increase sharply as cognitive impairment worsens. Physicians caring for elderly individuals with dementia should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.

}, keywords = {Aged, Aged, 80 and over, Caregivers, Cost of Illness, Dementia, Female, Health Care Costs, Humans, Male, Multivariate Analysis, Regression Analysis, Severity of Illness Index, Time Factors, United States}, issn = {0884-8734}, doi = {10.1111/j.1525-1497.2001.10123.x}, author = {Kenneth M. Langa and M.E. Chernew and Mohammed U Kabeto and A. Regula Herzog and Mary Beth Ofstedal and Robert J. Willis and Robert B Wallace and Mucha, L.M. and Walter L. Straus and A. Mark Fendrick} }