Table 3.
Summary of Measures, Their Purpose and Testing Occasion
| Domain (Purpose) | Measure (Citation/Source) | Description | Number of Items | Respondent | Testing Occasion |
|---|---|---|---|---|---|
| Background (descriptive/possible covariate) | US Census and other sources | Client gender, race/ethnicity, age, living arrangement, income, education, | Caregiver | T1 | |
| Client health conditions | National Long-Term Care Survey. | dichotomous checklist | 26-item | Caregiver | T1 |
| Client physical dependence | Caregiver Assessment of Function (CAFU) | CG proxy report of client’s dependence (a little to complete help) (alpha =.90) | 16 Items | Caregiver | T1, T3, T4 |
| Client cognitive status (descriptive/possible covariate) | IQ Code | High reliability, validity via Telephone; assesses cognitive decline and dementia. CGs indicate extent person changed from 10 years ago in domains (score=1-5). | 16-item | Caregiver | T1 |
| Client behavioral symptoms Secondary Outcome | Neuropsychiatric Inventory brief questionnaire (NPI-Q). | CG rates presence of symptoms in past month (yes/no), severity 1–3 (score 0–36)., and CG distress from 1–5 (score 0–60; higher scores=more severity or distress). The NPI-Q has an interscale correlation of 0.91 for severity. | 14 symptoms – if present then frequency, severity, and distress are also asked | Caregiver | T1, T2, T3, T4 |
| Background | US Census and other sources | gender, race/ethnicity, age, living arrangement, income, employ-ment status, education, relationship to client, duration of care | Caregiver | T1 | |
| CG health conditions | National Long-Term Care Survey. | Dichotomous checklist | 26 items | Caregiver | T1 |
| Depressive symptoms (primary endpoint) | Center for Epidemiological Studies Depression Scale (CES-D) | Sensitive to change; Cut off for depression >16 (alpha = .91). It is sensitive to change and has strong psychometric properties. | 20-items | Caregiver | T1, T2, T3, T4 |
| CG well-being (primary endpoint) | Perceived Change for Better Index | Assesses perceived change (gotten worse (a little, a lot), stayed the same, or improve (a little or a lot) in 3 areas: affective wellbeing, somatic (fatigue, sleep, overall health), ability to manage day-to-day care). It is sensitive to change and has strong psychometric properties. | 21 Items | Caregiver | T1, T2, T3, T4 |
| Caregiver upset & burden (secondary outcome) | NPI-Q | -For each NPI-Q behavior, CG rates upset (0=no upset to 4=very upset) and has an interscale correlation of 0.92. | Up to 16 items | Caregiver | T1, T2, T3, T4 |
| Vigilance | From REACH II | Ability to leave the client alone in a room, time spent providing care, time on duty, time for caregiver | 5 items | Caregiver | T1, T2, T3, T4 |
| CG socio-emotional support (mediator) | Developed by Pearlin and colleagues. | Socio-emotional support of family caregivers or degree of emotional closeness and cohesion towards social network | 8-items | Caregiver | T1, T3, T4 |
| Caregiver stress (secondary outcome) | Kingston Caregiver Stress Scale | Measures stress from three different sources: caregiving, family, and financial issues. Dementia care. Designed for family caregivers of persons with dementia. Has high reliability and validity | 10 Items | Caregiver | T1, T2, T3, T4 |
| Relationship Closeness (mediator) | Relationship Closeness Scale | 4-point Likert scale measures the caregiver’s level of agreement with 6 statements. | 6 items | Caregiver | |
| Days attending ADS (Secondary outcome) | ADS Census Records | ADS Director | T1, T3, T4 | ||
| Residential placement (Secondary outcome) | Family caregiver report and through follow-up with ADS sites. | Type and timing of residential care placement (e.g., entry into a 24-hour residential care setting for at least 90 days, including family care/adult foster care, assisted living, or nursing home) and death rates. Prior research shows that caregiver report compares favorably to other data collection strategies (e.g., claims data). | ADS Director | T1, T3, T4 | |
| Program-level variables | Beale coding system. This is for geographic location; i.e., urban, rural, etc. | Number of clients, staffing (turnover, number of direct care staff hours per client per day; number of registered nurse hours per client per day), certification status, profit status (e.g., non-profit, for-profit, religious-affiliated, government entity), and whether ADS is part of a chain (e.g., 2 or more jointly owned adult day programs). ADS programs will also be classified by urban/rural location | ADS Directors | Baseline Survey to Directors | |
| Service utilization | - Resource Utilization in Dementia (RUD) 18 - Services Utilization and Resources Survey (SURF) |
Questionnaire relevant to non-dementia caregiving for measuring patient and caregiver healthcare service use in clinical trials Service use and length of stays will be established by CGs. Since economic aim entails measuring actual costs in year in which they occurred, future costs do not need to be discounted. | Caregiver | T1, T3, T4 | |
| Willingness to Pay | Investigator developed | Assuming you had the funds, how much would you be willing to pay for a service that… | 1 Item | Caregiver | T1, T2, T3, T4 |
Note: CG=caregiver; ADS=adult day services