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Table 3 Key study measures for the UPLIFT-AD trial by study aim

From: Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes

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

  1. “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
  2. 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)
  3. 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
  4. aThe original EOLD-CAD response option indicating “a lot intense” was modified to instead read “very intense” during pilot testing of study measures during
  5. bDue to the low correlation among Physical Symptom items (n = 3), the scale creators suggest assessing these three items independently
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BMC Palliative Care

ISSN: 1472-684X

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