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LINKAGE AND RETENTION: WHOSE SYSTEM IS IT ANYWAYS? or

LINKAGE AND RETENTION: WHOSE SYSTEM IS IT ANYWAYS? or Every system is perfectly designed to achieve exactly the results it achieves or Why are there holes in Swiss Cheese?.

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LINKAGE AND RETENTION: WHOSE SYSTEM IS IT ANYWAYS? or

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  1. LINKAGE AND RETENTION: WHOSE SYSTEM IS IT ANYWAYS? or Every system is perfectly designed to achieve exactly the results it achieves or Why are there holes in Swiss Cheese? NYS SPNS Upper Manhattan Regional Group Collaborative: July 19, 2012 Bruce D. Agins, MD MPH; Principal Investigator, NY-LINKSMedical Director, AIDS Institute, NYSDOH

  2. Overview • Why early treatment is important and a community problem • Why we need to make a maximum effort to focus on linkage and retention • Why quality improvement is a critical strategy to improve linkage and retention rates • Why we need to think about ourselves differently as a system

  3. Rationale for Early Treatment

  4. When to Initiate Treatment Guidelines May 2012, NYSDOH AIDS Institute

  5. Key Evidence: Early Initiation Deferring ART until a CD4 count of 251-350 cells/mm3 was associated with higher rates of AIDS and death than starting treatment in the range of 351-450 cells/mm3. Sterne [When to Start Consortium] (2009) Initiating ART at CD4 counts <500 cells/mm3 was independently associated with increased mortality. Kitahata et al. (2009) [NA-ACCORD] Cardiovascular risk among HIV-infected individuals could be reduced when ART is initiated at higher nadir CD4 counts. Ho et al. (2010)

  6. Key Evidence: Community Prevention • In 2000, Quinn (NEJM) shows that in a community in rural Uganda that viral load suppression prevents transmission (<1500 copies) • In 2005, Castilla (JAIDS) shows that HAART independently and significantly reduces likelihood of transmission in Madrid. • In 2010, Das shows that decreasing community viral load in San Francisco is associated with a corresponding decrease in new HIV infections.

  7. Donnell, 2010Partners in Prevention HSV/HIV Transmission Study • Large multicenter prospective cohort analysis of patients initiated on ART in 7 African countries involving 3381 couples with 103 genetically linked HIV transmission events • 349 participants initiated ART • Only 1/103 transmitted HIV to an uninfected partner • Use of antiretroviral therapy was accompanied by a 92% reduction in HIV-1 transmission to the uninfected partner

  8. Prevention of HIV-1 Infection with Early Antiretroviral Therapy (HPTN 052) 9 countries, 1763 serodiscordant couples; Infected partners were male or female (50% each) Randomly assigned by 1:1 ratio to early therapy (immediate) or delayed therapy (onset of symptoms) Ongoing counseling and condoms provided 39 HIV Transmission events: 4 in early therapy group Incidence: 0.3 (early) vs. 2.2(delayed) per 100 person years 28 total linked transmissions between couples: 1 linked transmission in the early therapy group Incidence: 0.1 (early) vs. 0.9 (delayed) per 100 person years Cohen MS, Chen YQ, McCauley M, et al., HPTN 052 Study Team Prevention of HIV-infection with early antiretroviral therapy. N Engl J Med 2011;365:493-505

  9. HPTN 052: Conclusion • The early initiation of antiretroviral therapy reduced rates of sexual transmission of HIV-1 and clinical events, indicating both personal and public health benefits from such therapy.

  10. Why Linkage and Retention?

  11. Engagement in Care Continuum (HRSA) Non-Engager Sporadic User Fully Engaged [1] Health Resources and Services Administration, HAB. August 2006. Outreach: Engaging People in HIV Care Summary of a HRSA/HAB 2005 Consultation on Linking PLWH Into Care. [2] Eldred L, Malitz F. Introduction [to the supplemental issue on the HRSA SPNS Outreach Initiative]. AIDS Patient Care STDS 2007; 21(Suppl 1):S1–S2.

  12. Blueprint for HIV Treatment Success Ulett et al. AIDS Pt Care STDS 2009;23:41-49, Mugavero et al. Clin Infect Dis 2011;52(S2).

  13. 21% Undiagnosed 31% Not linked 41% Not retained 19% VL<50 c/mL Adapted from: Gardner et al. Clin Infect Dis 2011;52:793, Greenberg et al. Health Affairs 2009;28:1677, Marks et al. AIDS 2010;24:2665

  14. Health Outcomes Early and continued retention in care was associated with VL suppression. The number of missed visits was inversely associated with VL suppression. (Mugavero) Analysis of retention among 2197 newly diagnosed patients in SC from 2004-2009 show that poor retention predicted lower VL suppression, poor CD4 improvement and increased risk of mortality. (Tripathi) Linkage to to care within 3-9 months in Seattle was correlated with VL suppression and continued engagement in care. (Dombrowski)

  15. National HIV/AIDS Strategy Increase HIV serostatus awareness Increase RW clients in continuous care Increase linkage to care w/in 3 months of Dx Increase proportion of HIV Dx’d persons with undetectable VL by 20% Adapted from Mugavero

  16. Why Focus on New Patients? The first year in outpatient HIV medical care is a dynamic, formative and vulnerable time Poor early retention in care associated with: Delayed / failed antiretroviral therapy (ART) receipt Delayed time to VL suppression and greater cumulative HIV burden Increased sexual risk transmission behaviors Increased risk of clinical events & mortality Worse ART adherence, CD4 & VL response and increased long-term mortality following ART start Adapted from: Mugavero Technical Working Group Presentation 2012.--Ulett et al. AIDS Pt Care STDS 2009;23, Giordano et al. JAIDS 2003;32, Metsch et al. Clin Infect Dis 2008;47, Mugavero et al. Clin Infect Dis 2009;48, Tripathi et al. AIDS Res Hum Retrovirus 2011;e-pub, Giordano et al. Clin Infect Dis 2007;44

  17. Interventions

  18. Adapted from: Mugavero Technical Working Group Presentation, 2012--Ulett et al. AIDS Pt Care STDS 2009;23:41-49 and Mugavero. Top HIV Med 2008;16:156-61. Based upon behavioral Model of Health Services Utilization: Andersen RM. J Health Soc Behav 1995;36:1-10

  19. Supportive/Ancillary Service Interventions HRSA SPNS & Client Demonstration Projects: 8 studies, largely cross-sectional Ancillary services: Case management Transportation Housing Substance abuse services Mental health services Association of ancillary service receipt with: Entry into HIV medical care Retention in HIV medical care Measurement variability Independent, dependent & mediating variables How is ‘need’ for ancillary services defined and measured Demonstrated a need for integrated system- and community-wide databases AIDS Care 2002;14:Supplement 1

  20. Peer & Outreach Interventions: HRSA SPNS Outreach Initiative Focusing on Linkage & Retention Demonstration project supporting heterogeneous approaches & samples: Behavioral interventions; Intensive case management Health literacy and life skills Outreach in provision of medical services Supportive services included in 8 of 10 programs -Structural, financial & personal barriers common, and highly correlated with retention: Reduction in barriers  improved retention - Tobias et al. AIDS Pt Care STDS 2007;21:S3, Rajabuin et al. AIDS Pt Care STDS 2007;21:S9

  21. What we know about interventions (Mugavero) • Limited RCT evidence available • Supportive services & outreach pivotal • Measurement challenges • Resource intensive • Brief strengths-based intervention efficacious for linkage to care…but early retention a challenge • Intensive outreach for individuals not engaged in care within 6 months of a diagnosis may be effective • Use of peer or paraprofessional patient navigators may be successful • Relatively simple, clinic-based approaches promising…but are they effective for the most vulnerable?

  22. HIV System Navigation Bradford. AIDS Pt Care STDS 2007;21:S49

  23. Peer & Outreach Interventions: HRSA SPNS Outreach Initiative Focusing on Linkage & Retention -Barriers to HIV care can be reduced or removed with sufficient resources -Additional resources and system changes needed for most disadvantaged persons Tobias et al. AIDS Pt Care STDS 2007;21:S3, Rajabuin et al. AIDS Pt Care STDS 2007;21:S9

  24. Systemic Quality Improvement Systems, Run Charts and Swiss Cheese

  25. QI Principles & Frameworks Fundamental Concept of Improvement: “Every system is perfectly designed to achieve exactly the results it achieves” Principles of Improvement: Understanding work in terms of processes and systems Developing solutions by teams of providers and patients Focusing on patient needs Testing and measuring effects of changes 27

  26. and adapted from a presentation by Sir Liam Donaldson.

  27. Applying the Model to: • Linkage • Retention in Care

  28. LINKAGE TO CARE DEFENSES Skilled Counseling Staff Appropriate/Convenient Referral Systems (diverse locations, availability) Support services available and accessible Navigation services Available Transportation Resources Consumer education HIV DIAGNOSIS Counselor does not address linkage Consumer: competing priorities/ health beliefs/fear of stigma FAILED LINKAGE Not linked to appropriate supportive services (CM, SU, MH, Housing) No available appointment No transportation to HIV clinical care Difficult navigation of clinical environment; Navigators unavailable THE GAPS

  29. RETENTION IN CARE DEFENSES Effective Connection to Ongoing Supportive Services Flexible Appointment/Reminder Systems Friendly and supportive clinical environment Peer navigation/support Effective treatment adherence strategies Provider/patient support LINKED CONSUMER Consumer priorities/challenges (Housing, Work, Childcare, Transportation, Insurance, Financial Concerns) NOT RETAINED IN CARE Lack of provider/program follow-up on those lost-to-care Appointment scheduling and provider availability Unfriendly clinic environment or just a bad day today Lack of supportive services: MH, SU, CM THE GAPS

  30. We have an opportunity. We have the federal, state and county leaders aligned in support of our mission. We have a National AIDS Strategy driving us. We have a special one-time federal grant. We have the skills. We have the support. We are all working together in one system that determines how linkage and retention happen. If we can all work together, we can change the system for the sake of our patients, for the sake of our clients and for the sake of our community. The time is now. Let us improve together.

  31. ACKNOWLEDGEMENTS CONTACT INFORMATION Bruce D. Agins, MD MPH bda01@health.state.ny.us 212.417.4536 Principal Investigator, SPNS; NY-LINKS • Meredith Baumgartner • Kathleen Cavolo • JohanneMorne • Cameron Stainken • Andrew Wei • Michael Mugavero • Sir Liam Donaldson

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