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Showing 1 – 11 of 11 results.
Curated

Advance Directives Among Community-Dwelling Stroke Survivors, Maryland, 2021 (ICPSR 38968)

Released/updated on: 2025-11-13
Geographic coverage: United States, Maryland
This study sought to identify determinates of advanced directives made by stroke survivors through a cross-sectional survey in the state of Maryland. Adult community-dwelling stroke survivors living in Maryland were surveyed on advance directives, palliative care knowledge, and attitudes towards life-sustaining treatments. Age, prior advance care planning discussion with a physician, palliative care knowledge, and attitudes towards life-sustaining treatments were independently associated with advance directives.
Curated
Partially restricted
Simple Crosstabs

Americans' Changing Lives: Waves I, II, III, IV, V, and VI, 1986, 1989, 1994, 2002, 2011, and 2021 (ICPSR 4690)

Released/updated on: 2024-12-12
Geographic coverage: United States
Time period: 1986-01-01--2021-01-01

The Americans' Changing Lives (ACL) survey series is an ongoing, nationally representative, longitudinal study focusing especially on differences between Black and White Americans in middle and late life. These data constitute the first, second, third, fourth, fifth, and sixth waves in a panel survey covering a wide range of sociological, psychological, mental, and physical health items. Wave I of the study began in 1986 with a nation face-to-face survey of 3,617 adults ages 25 and up, with Black Americans and people aged 60 and over over-sampled at twice the rate of the others. Wave II constitutes face-to-face re-interviews in 1989 of those still alive. Survivors have been re-interviewed by telephone, and when necessary face-to-face, in 1994 (Wave III), 2001/02 (Wave IV), 2011 (Wave V), and 2019/21 (Wave VI).

Please note that for Wave VI, the majority of data collection occurred in 2019, with only a small subset (n=39) of participants surveyed in 2021.

ACL was designed and sought to investigate the following: (1) The ways in which a wide range of activities and social relationships that people engage in are broadly "productive," (2) how individuals adapt to acute life events and chronic stresses that threaten the maintenance of health, effective functioning, and productive activity, and (3) sociocultural variations in the nature, meaning, determinants, and consequences of productive activity and relationships. Among the topics covered are interpersonal relationships (spouse/partner, children, parents, friends), sources and levels of satisfaction, social interactions and leisure activities, traumatic life events (physical assault, serious illness, divorce, death of a loved one, financial or legal problems), perceptions of retirement, health behaviors (smoking, alcohol consumption, overweight, rest), and utilization of health care services (doctor visits, hospitalization, nursing home institutionalization, bed days). Also included are measures of physical health, psychological well-being, and indices referring to cognitive functioning.

Demographic information provided for individuals includes household composition, number of children and grandchildren, employment status, occupation and work history, income, family financial situation, religious beliefs and practices, ethnicity, race, education, sex, and region of residence.

Curated
Simple Crosstabs

Home Health Agency Quality Improvement Strategies, United States, 2013-2018 (ICPSR 38652)

Released/updated on: 2023-02-16
Geographic coverage: United States
Time period: 2013-01-01--2018-12-31
The main objective of the study was to assess home health agency quality improvement strategies across the United States. A mail-based survey was administered to a national sample of directors of home health agencies. The survey asked about the technologies, health services, and quality measures used at each agency, and they had considered or adopted these in the time period between 2013 and 2018.
Curated

National Home and Hospice Care Survey, 1992 (ICPSR 6536)

Released/updated on: 2006-01-12
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 1992 is the first annual survey of home health agencies and hospices and their patients and discharges. The survey was designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff personnel, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff people most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes service provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, race, Hispanic origin, and marital status.
Curated

National Home and Hospice Care Survey, 1993 (ICPSR 6664)

Released/updated on: 2006-01-12
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 1993 is the second annual survey of home health agencies and hospices and their current patients and discharges. This survey was designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with the agency administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff personnel, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff persons most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes service provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, Hispanic origin, race, and marital status.
Curated

National Home and Hospice Care Survey, 1994 (ICPSR 6733)

Released/updated on: 2006-01-12
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 1994 is the third annual survey of home health agencies and hospices and their current patients and discharges. These surveys were designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with the agency administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff personnel, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff persons most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes services provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, race, Hispanic origin, and marital status.
Curated

National Home and Hospice Care Survey, 1996 (ICPSR 2707)

Released/updated on: 2006-01-18
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 1996 is the fourth survey of home health agencies and hospices and their current patients and discharges. These surveys were designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with the agency administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff personnel, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff persons most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes services provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, race, Hispanic origin, and marital status.
Curated

National Home and Hospice Care Survey, 1998 (ICPSR 3763)

Released/updated on: 2006-01-18
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 1998 examines home health agencies and hospices and their current patients and discharges. These surveys were designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with the agency administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff persons most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes services provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, race, Hispanic origin, and marital status.
Curated

National Home and Hospice Care Survey, 2000 (ICPSR 3791)

Released/updated on: 2006-06-22
Geographic coverage: United States
The National Home and Hospice Care Survey (NHHCS) for 2000 examines home health agencies and hospices and their current patients and discharges. These surveys were designed to provide information for those who establish standards for, plan, provide, and assess long-term care services, both in the home and in inpatient settings. Data on agency characteristics were obtained through personal interviews with the agency administrators and include the number of home health and hospice patients served in the last 12 months, type of facility ownership (i.e., profit, nonprofit, government, other), Medicare and Medicaid certification, number and type of staff, and the hours they worked. Data on a sample of patients currently receiving home health and hospice care as well as a sample of discharges were obtained by interviewing staff persons most familiar with the care provided to these patients. Respondents were requested to refer to medical or other records whenever necessary. No patient was interviewed directly. Information for patients currently receiving services and discharged patients includes services provided and provider type, type of residence, referral source, medical diagnosis, type of care (home health or hospice), type of aids used (eyeglasses, dentures, walker, cane, oxygen, hospital bed, etc.), daily living activities that required assistance, and billing charges and expected payment source(s). The discharge diagnosis for discharged patients was also recorded. Demographic variables for both types of patients include sex, age, race, Hispanic origin, and marital status.
Curated

National Home and Hospice Care Survey, 2007 (ICPSR 28961)

Released/updated on: 2010-09-01
Geographic coverage: United States
Time period: 2007-08-01--2008-02-01, 2007-09-01--2008-04-01

The National Home and Hospice Care Survey (NHHCS) was reintroduced into the field in 2007 after a 7-year break. During that time, the survey was redesigned and expanded to include a computer-assisted personal interviewing (CAPI) system, many new data items, and larger sample sizes of current home health patients and hospice discharges. All agencies that participated in the survey were either certified by Medicare and/or Medicaid or were licensed by a state to provide home health and/or hospice services and currently or recently served home health and/or hospice patients. Agencies that provided only homemaker services or housekeeping services, assistance with instrumental activities of daily living (IADLs), or durable medical equipment and supplies were excluded from the survey. The 2007 NHHCS included a supplemental survey of home health aides employed by home health and/or hospice agencies, called the National Home Health Aide Survey (NHHAS). The 2007 NHHCS data were collected through in-person interviews with agency directors and their designated staffs; no interviews were conducted directly with patients or their families and/or friends. Agency data collected, available in agency administrative records, included information on the year an agency was established, the types of services an agency provided, referral sources, specialty programs, and staffing characteristics. Data collected on home health patients and hospice discharges, available in medical records, included age, sex, race and ethnicity, services received, length of time since admission, diagnoses, medications taken, advance directives, and many other items.

The National Home Health Aide Survey (NHHAS), the first national probability survey of home health aides, was designed to provide national estimates of home health aides employed by agencies that provide home health and/or hospice care. The NHHAS survey instrument included sections on recruitment, training, job history, family life, management and supervision, client relations, organizational commitment and job satisfaction, workplace environment, work-related injuries, and demographics.

Curated

National Hospice Study: Patient and Facility Data, [1980-1983] (ICPSR 8466)

Released/updated on: 2006-01-12
Geographic coverage: United States
Time period: 1980-01-01--1983-01-01
The purpose of the National Hospice Study was to examine the impact of hospice care on the quality of life of patients and their families and the health care cost incurred by patients. The National Hospice Study consists of two distinct, but interrelated, primary data collection components. The first relates to patient level studies of the costs incurred by patients and their families during the final phases of terminal cancer as well as the quality of life that they experienced during this period. The second component of the study relates to comparisons of the hospices that had received special demonstration funding from the Health Care Financing Adminstration for reimbursement of costs incurred by Medicare patients and those that had not. To address the issue of the desirability of reimbursing for hospice under Medicare, data from a large number of hospice and nonhospice patients were gathered. Patients were identified via the sites of care serving them, both hospice and nonhospice. Three types of data were collected: (1) facility level characteristics for a sample of all hospices nationwide, (2) census of intake and discharge characteristics for all patients served by those hospices during the study period, and (3) an extensive interview schedule regarding the quality of care and adequacy of Medicare reimbursement programs was conducted in both hospice and nonhospice settings with a sample of those patients fulfilling certain selection criteria (as well as their primary care person and family).
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