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Table 1 Key Study Variables with Measurement Tools and Data Collection Points

From: Protocol of a randomized controlled trial to test the effects of client-centered Representative Payee Services on antiretroviral therapy adherence among marginalized people living with HIV

CONSTRUCT

SCALE

ITEMS

DATA COLLECTION POINTS

 

Months Since Randomization

ART Adherence

Baseline

3

6

12

18

24

HIV Biomarkers

Data Abstraction from Study Sites

CD4, Viral Load; continuous variables

 

Sociodemographics

Self-report: HRSA reporting measures [29]

Age, race, gender, date of first diagnosis (if known), income, HIV transmission risk behavior

     

ART Adherence

Self-report: CASE Adherence Index [28]

3 items

1. How often do you feel that you have difficulty taking your HIV medications on time?

2. On average, how many days PER WEEK would you say that you missed at least one dose of your HIV medications?

3. When was the last time you missed at least one dose of you HIV medications?

  

Housing Instability

Housing Status 1

Self-report: Wolitski, et al., 2010 [30]

One item: “Which best describes your current living situation?” (Stably Housed/Unstably House/Homeless)

 

  

Housing Status 2

Self-report: Newly developed by team

“In the past 90 days, have you (a) Received an eviction notice or notice to vacate because your rent was not paid? (b) Had your utilities shutoff because your bill was not paid?”

 

  

Self-Efficacy for Health Behaviors

Self-efficacy for adherence

Self-report: HIV-ASES, Johnson, 2007 [31]

12-item scale designed to assess self-efficacy for taking HIV medications

 

  

Financial Stress

Self-report of financial stress

Self-report: Financial measures from Background Stress Inventory [32]

5 item scale: In the past month, how often did you feel distressed by the following?

1. Finding the time to pay your bills by the due date.

2. Not being able to pay your bills.

3. Unexpected events requiring additional spending that exceed your budget (e.g. vehicle repair and urgent medical attention.)

4. Existing and/or growing debt.

5. Consequences of late payments (such as having utilities shut off.)

  

Retention in Care

Retention in Care

Data Abstraction from Study Sites (HRSA HIV/AIDS Bureau Reporting Measure) [29]

• Proportion of missed versus total scheduled visits

• Verification of at least one primary care visit per quarter

• 2 kept visits separated by ≥90 days (dichotomous, ‘yes’ = retained)

 

  

Additional Variables

Health/Mental Health Quality of Life

Single Item General Health Measure (SF-12; DeSalvo, 2006) [33]

In general, would you say your health is: (Excellent, Very good, Good, Fair, Poor)

 

  

Experiences of Payeeship (Intervention arms only)

Self-Report: Rosen et al., 2005 [34]

17-item questionnaire with 4 subscales:

• Satisfaction with payee/case manager

• Involvement of beneficiary in money management

• Perceived benefit from payee arrangement

• Feeling coerced

  

  

Substance use

Risk Assessment Battery [35]

40-item scale assessing substance use and sexual risks

 

  

Depressive Symptoms

Quick Inventory of Depressive Symptomology [36]

16-item scale; self-report of depressive symptoms

 

  

Connections with providers

Health Care Relationship Trust Scale [37]

15-item scale assessing patient provider relationship; i.e., discussion options, committed to best care, interested in me as a person, excellent listener, accepts me, tells me complete truth, trusts me as an individual, makes me feel I am worthy of his/her time, takes time to listen, comfort talking about personal issues, feel better after seeing healthcare provider

 

  

Exposure to Services

Data Abstraction from Study Sites

Number of supportive services provided by Action Wellness/TOD during study period (where/how often):

• Adherence support

• Housing support – financial assistance

• Housing support – place to stay Transportation support

• Medical case management

• Peer navigation

• Meetings with Medical Case Manager to discuss Representative Payee

 

  

Social Support

MOS-SSS [38]

Five items from MOS-SSS that assess emotional, informational, and tangible functional forms of social support.

 

  

Additional Variables for Economic Analysis

Wage level for clients

Data Abstraction from Study Sites

US Department of Labor website

 

  

Time spent traveling to meet with MCM regarding CCRP

Self-report: Newly developed by team

How long does it take you to travel one- way to visit with your case manager?

 

  

Transportation cost for participants

Self-report: Newly developed by team

How much does it cost you to travel one-way to visit with your case manager?

 

  

Staff personnel costs

Data Abstraction from Study Sites

Accounting records and budgets

One-time – not participant specific

Materials and consumables

Data Abstraction from Study Sites

Accounting records and budgets

One-time – not participant specific