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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

  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