Table 3.
Key study measures for the UPLIFT-AD trial by study aim
| Measure | Construct | Description | Properties (subscales & reliability coefficients if appropriate) | UPLIFT Data Source(s) | UPLIFT Aim | Data Collection Periods |
|---|---|---|---|---|---|---|
| EOLD-CAD | Intensity of symptoms and conditions |
Items: 14 Recall: Past 30 days Response options: 3-point ranging from “not at all intense” to “very intense”a |
Full scale [36]: α = .85 Subscales [36]: Physical Distress: α = .74 Emotional Distress: α = .82 Well Being: α = .80 Dying Symptoms: α = .70 |
NH Staff Family |
Aim 1 | T1, T2, T3, T4 |
| EOLD-SM | Frequency of physical and emotional symptoms |
Items: 9 Recall: Past 30 days Response options: 6-point ranging from “never” to “every day” |
Full scale [36]: α = .78 Subscales [36]: Psychological Symptoms: α = .81 Physical Symptoms: α = .47b |
NH Staff Family |
Aim 1 | T1, T2, T3, T4 |
| EOLD-SWC | Satisfaction with care |
Items: 10 Recall: Past 30 days Response options: 4-point ranging from “strongly agree” to “strongly disagree” |
Full scale [36]: α = .90 Subscales: [None] |
Family | Aim 1 | T1, T2, T3, T4 |
| Palliative Care Screen | Assessment of resident PC needs; acuity assessment |
Items: 6 Recall: Present Response options: Yes/No |
N/A; created by the UPLIFT research team; items cover non-concordant goals of care; lack of ACP documentation; hospitalization; unmanaged symptoms; polypharmacy; complex care | PC Leads | Aim 2 | Within 1 month of UPLIFT initiation; then as needed |
| Fidelity Checklist | UPLIFT Implementation Tracking | 5 domains | N/A; created by the UPLIFT research team; domains include referrals/consultations; hospitalizations; deaths; adverse events; change in PC needs | PC Leads and/or PC Consultants | Aim 2 | At least monthly during UPLIFT implementation |
| Debriefing Interviews | Qualitative perceptions of implementation | Semi-structured interviews | N/A; created by the UPLIFT research team; includes perceptions of training, areas for improvement, sustainability | PC Leads | Aim 2 | T3 |
| Palliative Care Survey | Knowledge of and engagement in PC practices |
Items: 51 Recall: Varied Response options: Varied |
Subscales [26]: PC Practice Subscale: α = .75 PC Knowledge Subscale: α = .81 |
NH Staff | Aim 3 | T1, T2 |
“Family” respondents are broadly defined as the person responsible for making health-related decisions on behalf of the UPLIFT resident, which occasionally includes guardians, or close friends
T1 = Baseline; T2 = 6 months post-UPLIFT initiation; T3 = 1 year post-UPLIFT initiation; T4 = 1.5 years post-UPLIFT initiation (i.e., 6 months after UPLIFT discontinuation)
NH Nursing home, PC Palliative care, ACP Advance Care Planning, EOLD-CAD End of Life Dementia – Comfort Assessment in Dying scale, EOLD-SM End of Life Dementia—Symptom Management scale, EOLD-SWC (End of Life Dementia – Satisfaction with Care) scale
aThe original EOLD-CAD response option indicating “a lot intense” was modified to instead read “very intense” during pilot testing of study measures during
bDue to the low correlation among Physical Symptom items (n = 3), the scale creators suggest assessing these three items independently