Appendix B
Information on Selected Variables

INFORMATION ON SELECTED VARIABLES

dataset:

LSOA

site of death:

cause of death:

demographics:

SES

household:

household composition (age, relationship)

social supports:

social history

illnesses:

list of 13 serious conditions

physical symptoms:

physical function:

6 ADLS, 6 IADLs, mobility, falling, dizziness, incontinence

psychological symptoms:

quality of life:

cognition:

health services utilization support services:

satisfaction with care:



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Appendix B Information on Selected Variables INFORMATION ON SELECTED VARIABLES dataset: LSOA site of death: cause of death: demographics: SES household: household composition (age, relationship) social supports: social history illnesses: list of 13 serious conditions physical symptoms: physical function: 6 ADLS, 6 IADLs, mobility, falling, dizziness, incontinence psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care:

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family care: helpers with key activities out-of-pocket costs:   INFORMATION ON SELECTED VARIABLES dataset: NMFS site of death: cause of death: demographics: SES household: relationship of people living with social supports:   illnesses: hypertension, heart attack, angina, stroke, Alzheimer, dementia, mental health, diabetes, cancer, asthma, emphysema, bronchitis, cirrhosis, arthritis physical symptoms:   physical function: mobility, ADL, IADL psychological symptoms:   quality of life:   cognition: trouble understanding, remembering, recognizing, problem behaviors health services utilization support services: satisfaction with care: family care: did family members help/live with/help pay for care out-of-pocket costs: decedent funds and family expenses includes “help at home” INFORMATION ON SELECTED VARIABLES dataset: NHANES site of death: cause of death: demographics: SES

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household: delineates all members of household social supports:   illnesses: extensive list of conditions physical symptoms: extensive pain questionnaire physical function: difficulty doing 19 activities psychological symptoms: quality of life: cognition: self reported memory problems or confusion health services utilization support services: satisfaction with care: family care: out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: MEPS site of death: cause of death: demographics: SES household: social supports: illnesses: respondent lists conditions for each family member physical symptoms: pain physical function: ADL, IADL, mobility questions psychological symptoms: feeling anxious or blue quality of life: cognition: memory loss, confusion, decision making, supervision for safety health services utilization support services: satisfaction with care: general satisfaction, experience any difficulty, delay or lack of care

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family care: detail info about caregivers out-of-pocket costs: purchased medicines; alternative care (total expenditures only) INFORMATION ON SELECTED VARIABLES dataset: MDS site of death: cause of death: demographics: SES household: marital status; lived alone prior to adm social supports: family involvement; contact with relatives and close friends illnesses: checklist plus open ICD coding physical symptoms: pain, shortness of breath physical function: ADLS specificially and pattern psychological symptoms: mood, psychological well-being quality of life: cognition: memory, skills, delirium health services utilization support services: satisfaction with care: family care: out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: PSID site of death: cause of death: demographics: SES household: relationships social supports: illnesses:

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physical symptoms: physical function: basic needs like dressing, bathing , eating psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care: family care: out-of-pocket costs: incl paid paid nurse/aide coming to home INFORMATION ON SELECTED VARIABLES dataset: OASIS site of death: cause of death: demographics: SES household: spouse, other family, friend, paid help social supports: illnesses: diagnostic codes physical symptoms: pain, shortness of breath, nausea, bowel function physical function: ADLS, IADS psychological symptoms: “emotional” problems quality of life: cognition: alter, requires prompting, requires assistance, confused health services utilization support services: satisfaction with care: family care: who is caring, what types of assistance out-of-pocket costs:

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INFORMATION ON SELECTED VARIABLES dataset: NDI site of death: cause of death: demographics: SES household: social supports: illnesses: physical symptoms: physical function: psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care: family car : out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: NHHCS site of death: cause of death: demographics: SES household: family, nonfamily social supports: illnesses: primary or other diagnoses physical symptoms: physical function: receives help from this agency regarding ADLs, IADLs psychological symptoms: quality of life:

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cognition: health services utilization support services: satisfaction with care: family care: relationship to primary caregiver out-of-pocket costs: only as primary or secondary source of payment INFORMATION ON SELECTED VARIABLES dataset: NNHS site of death: cause of death: demographics: SES household: before adm to facility social supports: illnesses: primary and “other” diagnoses physical symptoms: physical function: ADLs, limited IALDs psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care: family care: out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: MCBS site of death: cause of death: demographics: SES household: persons staying in the household

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social supports: illnesses: long list physical symptoms: physical function: 6 ADLs, 6 IADLs psychological symptoms: quality of life: cognition: memory, making decisions, concentrating health services utilization support services: satisfaction with care: general satisfaction, availability, convenience, information received, costs, etc. family care : who helps with ADLs/IADLs out-of-pocket costs: equipment, prescriptions, alterations to house INFORMATION ON SELECTED VARIABLES dataset: NHIS site of death: cause of death: demographics: SES household: relationships among all in household social supports: illnesses: “have you ever been told” broad domains: cardiovascular disease, respiratory conditions, etc. physical symptoms: fatigue, tiredness, pain physical function: single item about “major activity limitation”; ADLs, IADLs, Nagi psychological symptoms: depression, anxiety, emotional problem quality of life: cognition: limited by difficulty remembering or confusions

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health services utilization support services: satisfaction with care: family care: out-of-pocket costs: how much spent for medical care (exc hlth insurance, over counter INFORMATION ON SELECTED VARIABLES dataset: NHEFS site of death: cause of death: demographics: SES household: # in household social supports: illnesses: ever had; doctor ever told arthritis, heart attack, stroke, diabetes, cancer, fx hip, osteoporosis, etc. physical symptoms: just arthritis (swelling, stiffness, pain) physical function: Katz ADL; Rosow-Breslau, and Fries Functional psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care: family care: out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: Medicare site of death: cause of death: demographics: SES

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household: social supports: illnesses: only as inferred from diagnostic codes on visits and stays physical symptoms: physical function: psychological symptoms: quality of life: cognition: health services utilization support services: satisfaction with care: family care: out-of-pocket costs: INFORMATION ON SELECTED VARIABLES dataset: NLTCS site of death: cause of death: demographics: SES household: identification of caregiver social supports: how many times did see/talk with friends illnesses: does … now have [30] conditions physical symptoms: physical function: 6 ADLs; 7 IADLs; Nagi items on range of motion and impairment; activity list psychological symptoms: confusion or emotional problem quality of life: cognition: mini mental health services utilization support services: satisfaction with care:

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family care: many details about who helps with ADLs and IADLs out-of-pocket costs: who pays for help with ADLs/IADLs; payment for nursing home, homecare INFORMATION ON SELECTED VARIABLES dataset: AHEAD site of death: cause of death: demographics: SES household: spouse, children, other social supports: asked in HRS 1994 module illnesses: major illnesses; severity reflected in type and intensity of care physical symptoms: pain, shortness of breath, fatigue physical function: difficulty with 12 physical tasks; if + then asked difficulty with 6 personal care activities psychological symptoms: CESD used in HRS 1994 quality of life: 14 questions on AHEAD Wave 1 cognition: dementia screening instrument, memory, reasoning health services utilization support services: satisfaction with care: family care : living with, assisting ADLS out-of-pocket costs: nursing home, prescriptions, in-home medical care, assistance with ADLs and IADLS