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Lessons Learned from a Retreat on Retention of
            Black MSM in the BROTHERS Study

Dr. Sheldon D. Fields and Christopher Chauncey Watson
for the HPTN-061 Black Caucus
2011 National HIV Prevention Conference
Atlanta, GA
August 15, 2011
Objectives
  Discuss the HPTN 061 (BROTHERS) Study schema

  Discuss lessons learned and challenges in
    attempting to retain participants in HPTN 061

  Discuss the profile of the retained participants in
    HPTN 061

  Discuss retention recommendations for researchers
    who are attempting to engage Black MSM in
    various studies
HPTN 061: BROTHERS Study
• A community-level pilot study
   – To obtain the information needed to design a full, community-wide
     randomized trial
• Being conducted in six U.S. communities
   – Atlanta, NYC, Boston, LA, San Francisco, Washington, DC
• To determine the feasibility and acceptability of a multi-
  component HIV-prevention intervention with Black MSM
• Recruitment of Black MSM
• Uptake of the intervention components by Black MSM
   – Agree to HIV testing
   – Agree to STI testing
   – Use peer navigation
• Two Year Study: 12mth recruit, 12mth F/U
Study Site Logos
Challenges Related to Retention
 •   Locator information
 •   Arrest and outstanding warrants
 •   Lack of means of transportation
 •   Housing issues
 •   Self-realization of sero-conversion
 •   Already having access to services
 •   Staff not the face of the study
 •   ACASI – To Long
 •   Scheduling follow-up appointments
     – Oracle system
     – At-A-Glance
 • No incentive for PHN services
Retention Retreat
• Setting: National Conference Center, Leesburg, VA
• Date: December 3 -5, 2010
• Participants: 18 Black Caucus members and invited
  guest
• Facilitation: Working group model
   – Facilitator: Dr. Sheldon D. Fields, Black Caucus Chair
• Charge: Assess study retention issues and develop
  recommendations to improve retention in the study
Retreat Participants
• Dr. Sheldon D. Fields – Black          •   Dr. LaRon E. Nelson
  Caucus Chair*                          •   Rudolph Carn
• Christopher Chauncey Watson*           •   Borris Powell
• Dr. Lawrence Bryant                    •   Chadwick K. Campbell
• Jonathan Paul Lucas                    •   Dr. Leo Wilton
• S. Wakefield                           •   Gregory D. Victorianne
• Craig Hutchinson                       •   Jamaal Clue
• Dr. Michael Arnold                     •   Jermel L. Wallace
• Christopher Hucks-Ortiz                •   Dr. Darrell P. Wheeler – Study
• Yovannys Kenney                            Co-Chair


   * Abstract Presenters: On Behalf of the HPTN 061 Black Caucus Group
HPTN 061 Retention Analysis
Christopher Chauncey Watson
  The George Washington University
  School of Public Health and Health Services
  Department of Epidemiology and Biostatistics
  Washington, DC
Recruitment Results *
Between 7/09 and 8/10, the six sites screened
5,886 participants to enroll 1,561 participants.
Men screened were recruited at
                                                      Total Recruited
     •Public venues (33.0%)
     •Clinical sites and community-based
                                                         n =1554
     organizations (9.4%)
     •Referred via social media, word of mouth            Eligible for Follow Up
     and/or screened by phone (51%).                              n=1468
Reasons for ineligibility varied with respect to
recruitment type after adjusting for clustering
                                                                 Overall 26 week
based on specific screening location
                                                                   Retention
The most common reasons for ineligibility were
                                                                      94%
     Not reporting UAI in the last 6 months
     (65.6%)
                                                                 Overall 52 Week
     Living out of the area/planning to move
                                                                    Retention
     (14.2%)
                                                                      79%

                                                    *Magnus et al Poster 1009 Abstract Y-170 Presented at CROI 2011
26 week         52 week
Number Expected                           (%)   Retention (%)   Retention (%)



Community Recruited                       89         81              78
Referral                                  11         78              81




Enrollment Category
Refused HIV Testing                       4          84              78

HIV -                                     75         80              78

HIV +, ND                                 12         90              86

HIV+, In care*                            5          --              --

HIV+, Not in Care, UAI with HIV -/Unkwn   5          --              --

HIV+, Not in Care, UAI with HIV + only    <1         58              2
26 week         52 week
Number Expected              (%)
                                   Retention (%)   Retention (%)

Age at Enrollment
                    18-20    7          7               79

                    21-30    27         28              79

                    31-40    19         18              72

                    41-50    34         33              82

                    51-+60   13         12              78

                     60+     1          1               91

Median Age                   39



Gender
                    Male     98         81              79

              Transgender    2          89              74
26 week         52 week
Number Expected    (%)
                         Retention (%)   Retention (%)


Household Income
Less than $5,000   25         76              74

$5,000-$9,999      13         84              80

$10,000-$19,999    22         81              78

$20,000-$29,999    13         83              82

$30,000-$39,999    10         82              79

$40,000-$49,999     6         82              86

$50,000-$59,999     4         75              73

$60,000-$69,999     2         90              85

$70,000-$79,999     1         75              54

$80,000+            4         87              89
26 week         52 week
Number Expected                      (%)
                                           Retention (%)   Retention (%)

Highest Education
8th grade or equivalent or less      1          67              64
Some high school                     16         75              76
High school graduate or equivalent   35         81              75
Vocational/trade/technical school    2          85              73
Some college or 2 year degree        33         82              83
Finished college                     10         84              83
Masters or other advanced degree     3          80              77

Currently Working
Yes                                  31         83              80
      Full-time                      46         83              82
      Part-time                      54         82              78
No                                   69         80              78
      Unemployed                     78         79              79
      Retired                        3          96             100
      Unable to work (disabled)      20         80              72
26 week         52 week
Number Expected                           (%)
                                                Retention (%)   Retention (%)



Ever Accepted PHN
Yes                                       68         81              79
     PHN Visits
     0                                    59         72             64
     1 to 10                              37        100             100
     11 to 20                             4         100             100
     More than 21                         1         100             100
No                                        32         80             92



Self-reported Sexual Identity per acasi
Homosexual                                25         83              84
Gay                                       40         83              84
Bisexual                                  39         78              75
Straight                                  5          83              71
Heterosexual                              4          81              64
26 week         52 week
Number Expected                                            (%)
                                                                    Retention (%)   Retention (%)


Trust in health care providers

I trust the health care providers I see in my health care setting
Strongly Disagree                                         11             75              66
Disagree                                                   6             84              83
Neither disagree/agree                                    18             78              75
Agree                                                     40             83              82
Strongly Agree                                            25             83              81



Trust in research

I trust the staff I have worked with in research studies
Strongly Disagree                                           7            82              71
Disagree                                                    4            94              90
Neither disagree/agree                                     15            80              73
Agree                                                      52            88              84
Strongly Agree                                             22            89              86
26 week            52 week
Number Expected                              (%)
                                                       Retention (%)      Retention (%)

Providers who are more like me in terms of race make me feel more comfortable than
providers who are different from me
Strongly Disagree                            17             76                    74
Disagree                                     23             83                    75
Neither disagree/agree                       33             81                    80
Agree                                        18             86                    82
Strongly Agree                                9             80                    84



Providers who are more like me in terms of sexual orientation make me feel more
comfortable than providers who are different from me
Strongly Disagree                            13             77                    72
Disagree                                     18             83                    76
Neither disagree/agree                       31             80                    78
Agree                                        23             82                    81
Strongly Agree                               15             84                    85
26 week              52 week
Number Expected                                     (%)
                                                               Retention (%)        Retention (%)

I am more comfortable with research staff who are like me in terms of sexual orientation than those
who are different than me
Strongly Disagree                                   13               82                    79
Disagree                                            22               93                    85
Neither disagree/agree                              39               86                    83
Agree                                               19               86                    90
Strongly Agree                                       7               92                    88



I am more comfortable with research staff who are like me in terms of race than those who are
different than me
Strongly Disagree                                   12               85                    78
Disagree                                            16               94                    86
Neither disagree/agree                              38               87                    84
Agree                                               22               87                    83
Strongly Agree                                      11               86                    88
26 week         52 week
Number Expected                 (%)
                                      Retention (%)   Retention (%)

Internalized Homophobia Scale
1 <= Scale < 2                  40         83              83
2 <= Scale < 3                  31         83              79
3 <= Scale < 4                  23         75              70
4 <= Scale < 5                   5         83              77
5 <= Scale < 6                   1         83              80

Social Support Scale
1 <= Scale < 2                  15         81              71
2 <= Scale < 3                  21         80              77
3 <= Scale < 4                  28         83              83
4 <= Scale < 5                  36         80              82

Depression Scale (CES-D)
0 <=Scale <= 15                 57         82              82
16 <= Scale                     43         80              78
What do we know?

• Current retention = 94% (26 weeks), 79% (52weeks)
• Peer Health Navigation engages participants and
  increase retention
• Participants engaging in current health care services
  have higher retention rates
• 69% of participants are reportedly < 300% poverty
  level




                   Demographics and Retention Data
What do we know?
• Lower support systems = lower retention
• ~50% of participants experience depression
  according to the CES-D model
• 70% of “hard to reach” have no contact
  information
• Opportunities exist with younger population (18-
  30), affluent men, homeless, incarceration
• Withdrawal from study



                Demographics and Retention Data
Results: Retention Report

•   Where are the BROTHERS – Released March 8, 2011
    – http://www.hptn.org/research_studies/HPTN061StudyDocume
      nts.asp#BlackCaucus
•   3 Major Areas of Concern
    – Burden/Benefit Analysis
       • Transportation, Visit length, ACASI, Reimbursement,
    – Intervention Delivery
       • Cultural competency, Confidentiality, Staffing, Recruitment, Contacts
    – Community Engagement
       • Locator form, Dedicated retention staff, Staff support and feedback,
         monthly communications
•   The retention report is online (See Above)
    – Detailed recommendations for each area identified
Results: Lessoned Learned

• Black MSM have competing life demands
   – Prioritize their lives differently
• Black MSM Retention must be:
   – Proactively Planned: Not at afterthought
   – Benefits must outweigh the study burden
• Logistical Issues of Concern for Black MSM
   –   Length of interviews
   –   Clinic/lab hours
   –   Transportation
   –   Compensation
• More counselor engagement between study visits
• More mental health support
• Historical Mistreatment Addressed
   – Racism and Homophobia
Additional Information
• Social Media
     facebook.com/HIVPTN
     twitter.com/HIVPTN


• Websites
  – www.hptn.org
  – www.blackmenstandtogether.org
Acknowledgements
• HPTN is sponsored by NIAID, NIDA, NIMH under
  Cooperative Agreement # U01 AI068619
• HPTN 061 Study Participants
• HPTN 061 Black Caucus
• HPTN 061 Protocol Team
Presenter Contact Information
Sheldon D. Fields, PhD, RN           Christopher Chauncey Watson
  Assistant Dean of Clinical Affairs   Research Field Supervisor
  and Health Policy                    The George Washington
  Florida International University     University School of Public
  College of Nursing and Health        Health and Health Services
  Sciences                             Department of Epidemiology
  Sdfields@FIU.edu                     and Biostatistics
  305-348-6992                         sphccw@gwumc.edu
                                       202-994-3340

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Lessons Learned from a Retreat on Retention of Black MSM in the BROTHERS Study

  • 1. Lessons Learned from a Retreat on Retention of Black MSM in the BROTHERS Study Dr. Sheldon D. Fields and Christopher Chauncey Watson for the HPTN-061 Black Caucus 2011 National HIV Prevention Conference Atlanta, GA August 15, 2011
  • 2. Objectives Discuss the HPTN 061 (BROTHERS) Study schema Discuss lessons learned and challenges in attempting to retain participants in HPTN 061 Discuss the profile of the retained participants in HPTN 061 Discuss retention recommendations for researchers who are attempting to engage Black MSM in various studies
  • 3. HPTN 061: BROTHERS Study • A community-level pilot study – To obtain the information needed to design a full, community-wide randomized trial • Being conducted in six U.S. communities – Atlanta, NYC, Boston, LA, San Francisco, Washington, DC • To determine the feasibility and acceptability of a multi- component HIV-prevention intervention with Black MSM • Recruitment of Black MSM • Uptake of the intervention components by Black MSM – Agree to HIV testing – Agree to STI testing – Use peer navigation • Two Year Study: 12mth recruit, 12mth F/U
  • 5. Challenges Related to Retention • Locator information • Arrest and outstanding warrants • Lack of means of transportation • Housing issues • Self-realization of sero-conversion • Already having access to services • Staff not the face of the study • ACASI – To Long • Scheduling follow-up appointments – Oracle system – At-A-Glance • No incentive for PHN services
  • 6. Retention Retreat • Setting: National Conference Center, Leesburg, VA • Date: December 3 -5, 2010 • Participants: 18 Black Caucus members and invited guest • Facilitation: Working group model – Facilitator: Dr. Sheldon D. Fields, Black Caucus Chair • Charge: Assess study retention issues and develop recommendations to improve retention in the study
  • 7. Retreat Participants • Dr. Sheldon D. Fields – Black • Dr. LaRon E. Nelson Caucus Chair* • Rudolph Carn • Christopher Chauncey Watson* • Borris Powell • Dr. Lawrence Bryant • Chadwick K. Campbell • Jonathan Paul Lucas • Dr. Leo Wilton • S. Wakefield • Gregory D. Victorianne • Craig Hutchinson • Jamaal Clue • Dr. Michael Arnold • Jermel L. Wallace • Christopher Hucks-Ortiz • Dr. Darrell P. Wheeler – Study • Yovannys Kenney Co-Chair * Abstract Presenters: On Behalf of the HPTN 061 Black Caucus Group
  • 8. HPTN 061 Retention Analysis Christopher Chauncey Watson The George Washington University School of Public Health and Health Services Department of Epidemiology and Biostatistics Washington, DC
  • 9. Recruitment Results * Between 7/09 and 8/10, the six sites screened 5,886 participants to enroll 1,561 participants. Men screened were recruited at Total Recruited •Public venues (33.0%) •Clinical sites and community-based n =1554 organizations (9.4%) •Referred via social media, word of mouth Eligible for Follow Up and/or screened by phone (51%). n=1468 Reasons for ineligibility varied with respect to recruitment type after adjusting for clustering Overall 26 week based on specific screening location Retention The most common reasons for ineligibility were 94% Not reporting UAI in the last 6 months (65.6%) Overall 52 Week Living out of the area/planning to move Retention (14.2%) 79% *Magnus et al Poster 1009 Abstract Y-170 Presented at CROI 2011
  • 10. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Community Recruited 89 81 78 Referral 11 78 81 Enrollment Category Refused HIV Testing 4 84 78 HIV - 75 80 78 HIV +, ND 12 90 86 HIV+, In care* 5 -- -- HIV+, Not in Care, UAI with HIV -/Unkwn 5 -- -- HIV+, Not in Care, UAI with HIV + only <1 58 2
  • 11. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Age at Enrollment 18-20 7 7 79 21-30 27 28 79 31-40 19 18 72 41-50 34 33 82 51-+60 13 12 78 60+ 1 1 91 Median Age 39 Gender Male 98 81 79 Transgender 2 89 74
  • 12. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Household Income Less than $5,000 25 76 74 $5,000-$9,999 13 84 80 $10,000-$19,999 22 81 78 $20,000-$29,999 13 83 82 $30,000-$39,999 10 82 79 $40,000-$49,999 6 82 86 $50,000-$59,999 4 75 73 $60,000-$69,999 2 90 85 $70,000-$79,999 1 75 54 $80,000+ 4 87 89
  • 13. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Highest Education 8th grade or equivalent or less 1 67 64 Some high school 16 75 76 High school graduate or equivalent 35 81 75 Vocational/trade/technical school 2 85 73 Some college or 2 year degree 33 82 83 Finished college 10 84 83 Masters or other advanced degree 3 80 77 Currently Working Yes 31 83 80 Full-time 46 83 82 Part-time 54 82 78 No 69 80 78 Unemployed 78 79 79 Retired 3 96 100 Unable to work (disabled) 20 80 72
  • 14. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Ever Accepted PHN Yes 68 81 79 PHN Visits 0 59 72 64 1 to 10 37 100 100 11 to 20 4 100 100 More than 21 1 100 100 No 32 80 92 Self-reported Sexual Identity per acasi Homosexual 25 83 84 Gay 40 83 84 Bisexual 39 78 75 Straight 5 83 71 Heterosexual 4 81 64
  • 15. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Trust in health care providers I trust the health care providers I see in my health care setting Strongly Disagree 11 75 66 Disagree 6 84 83 Neither disagree/agree 18 78 75 Agree 40 83 82 Strongly Agree 25 83 81 Trust in research I trust the staff I have worked with in research studies Strongly Disagree 7 82 71 Disagree 4 94 90 Neither disagree/agree 15 80 73 Agree 52 88 84 Strongly Agree 22 89 86
  • 16. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Providers who are more like me in terms of race make me feel more comfortable than providers who are different from me Strongly Disagree 17 76 74 Disagree 23 83 75 Neither disagree/agree 33 81 80 Agree 18 86 82 Strongly Agree 9 80 84 Providers who are more like me in terms of sexual orientation make me feel more comfortable than providers who are different from me Strongly Disagree 13 77 72 Disagree 18 83 76 Neither disagree/agree 31 80 78 Agree 23 82 81 Strongly Agree 15 84 85
  • 17. 26 week 52 week Number Expected (%) Retention (%) Retention (%) I am more comfortable with research staff who are like me in terms of sexual orientation than those who are different than me Strongly Disagree 13 82 79 Disagree 22 93 85 Neither disagree/agree 39 86 83 Agree 19 86 90 Strongly Agree 7 92 88 I am more comfortable with research staff who are like me in terms of race than those who are different than me Strongly Disagree 12 85 78 Disagree 16 94 86 Neither disagree/agree 38 87 84 Agree 22 87 83 Strongly Agree 11 86 88
  • 18. 26 week 52 week Number Expected (%) Retention (%) Retention (%) Internalized Homophobia Scale 1 <= Scale < 2 40 83 83 2 <= Scale < 3 31 83 79 3 <= Scale < 4 23 75 70 4 <= Scale < 5 5 83 77 5 <= Scale < 6 1 83 80 Social Support Scale 1 <= Scale < 2 15 81 71 2 <= Scale < 3 21 80 77 3 <= Scale < 4 28 83 83 4 <= Scale < 5 36 80 82 Depression Scale (CES-D) 0 <=Scale <= 15 57 82 82 16 <= Scale 43 80 78
  • 19. What do we know? • Current retention = 94% (26 weeks), 79% (52weeks) • Peer Health Navigation engages participants and increase retention • Participants engaging in current health care services have higher retention rates • 69% of participants are reportedly < 300% poverty level Demographics and Retention Data
  • 20. What do we know? • Lower support systems = lower retention • ~50% of participants experience depression according to the CES-D model • 70% of “hard to reach” have no contact information • Opportunities exist with younger population (18- 30), affluent men, homeless, incarceration • Withdrawal from study Demographics and Retention Data
  • 21. Results: Retention Report • Where are the BROTHERS – Released March 8, 2011 – http://www.hptn.org/research_studies/HPTN061StudyDocume nts.asp#BlackCaucus • 3 Major Areas of Concern – Burden/Benefit Analysis • Transportation, Visit length, ACASI, Reimbursement, – Intervention Delivery • Cultural competency, Confidentiality, Staffing, Recruitment, Contacts – Community Engagement • Locator form, Dedicated retention staff, Staff support and feedback, monthly communications • The retention report is online (See Above) – Detailed recommendations for each area identified
  • 22. Results: Lessoned Learned • Black MSM have competing life demands – Prioritize their lives differently • Black MSM Retention must be: – Proactively Planned: Not at afterthought – Benefits must outweigh the study burden • Logistical Issues of Concern for Black MSM – Length of interviews – Clinic/lab hours – Transportation – Compensation • More counselor engagement between study visits • More mental health support • Historical Mistreatment Addressed – Racism and Homophobia
  • 23. Additional Information • Social Media facebook.com/HIVPTN twitter.com/HIVPTN • Websites – www.hptn.org – www.blackmenstandtogether.org
  • 24. Acknowledgements • HPTN is sponsored by NIAID, NIDA, NIMH under Cooperative Agreement # U01 AI068619 • HPTN 061 Study Participants • HPTN 061 Black Caucus • HPTN 061 Protocol Team
  • 25. Presenter Contact Information Sheldon D. Fields, PhD, RN Christopher Chauncey Watson Assistant Dean of Clinical Affairs Research Field Supervisor and Health Policy The George Washington Florida International University University School of Public College of Nursing and Health Health and Health Services Sciences Department of Epidemiology Sdfields@FIU.edu and Biostatistics 305-348-6992 sphccw@gwumc.edu 202-994-3340