FACULTY. Lisa Hightow-Weidman, MD, MPH University of North Carolina at Chapel Hill
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1 MODULE 3
2 FACULTY Lisa Hightow-Weidman, MD, MPH University of North Carolina at Chapel Hill HOST David Malebranche, MD, MPH Cobb County Adult Detention Center Marietta, Georgia
3 Youth represented 21% of all people diagnosed with HIV in 2013
4 ????? OVER 50% of HIV-positive youth don t know they are infected
5 21 % Only 21% of HIV-positive youth are engaged in care.
6 At all stages of the HIV Care Continuum, youth are faring poorly, with only 13% achieving viral suppression
7 Young Black MSM have the highest risk with a 1 in 4 chance of being infected with HIV by age 25.
8 Patient: Stephen CASE STUDY Demographics 18 years Black MSM Chief Complaint None Social History Just completed high school Identifies as gay Small social network No regular partner Works part-time and attends community college part-time Medical History HIV-positive Diagnosed 15 months ago at age 17 Only recently started engaging in care Has never shared his sexual orientation with his provider Family History Not out to his parents, just his older sister Lives with older sister Mental Health and Substance Use History Some anxiety and depression Alcohol use: occasional Marijuana use: regular Sexual Health History Age at first sexual intercourse: 12 Has sex with men only (usually older) Receptive partner in anal sex Inconsistent condom use Life time male partners = 7
9 CASE STUDY Stephen Video Blog - Part 1 June 1, 2015: I just have to say it out loud: I m HIV positive! H.I.V. Positive! HIV. Me. I can t tell Mom and Dad. It ll kill them. That, or finding out their perfect son is a faggot. I might as well dig two 6 foot holes and throw them in. Camilla will help, as long as she doesn t make me tell them! What am I gonna do? I got school, work, and track. I can t sleep, can t eat, man I can t even focus. I just gotta stay on my grind. The test guy kept saying it s a lot to take in. He got that right! Barely remember anything he said I gotta go see a doctor. I ll call tomorrow. I m a hot mess.
10 The goal of His Health is to increase the capacity, quality and effectiveness of health care providers to screen, diagnose, link and retain Black MSM in HIV clinical care.
11 MODULE OVERVIEW Epidemiology of the youth HIV epidemic Defining linkage and retention HIV care for adolescents
12 LEARNER OBJECTIVES 1 Evolve cultural competencies for working with young patients 2 Use relationship building as a strategy for supporting engagement in care 3 Create environments, systems and services to effectively engage young patients 4 Develop standard practices for ongoing youth engagement in care
13 DEFINITIONS YOUTH years old BLACK Persons of African descent, American and all others MSM Men who are sexually active with other men LINKAGE TO CARE Entry into outpatient care after HIV diagnosis RETENTION IN CARE Continuous involvement in outpatient care over time ENGAGMENT IN CARE Distinct but interrelated processes of linkage to and retention in care
14 WHY ARE YOUTH IMPORTANT?
15 Pop-up Question FROM WHAT YOU HAVE LEARNED ABOUT STEPHEN, WHICH OF THE FOLLOWING MOST IMPACTS HIS ABILITY TO ACCESS CARE? A. HOMOPHOBIA B. HIS PEER NETWORK C. HIS SEXUALITY D. FAMILY DYNAMICS E. HEALTH INSURANCE F. ALL OF THE ABOVE
16 HIV CARE CONTINUUM 100% 86% 75% 50% 49% 40% 37% 25% 22% 18% 30% 13% 0% Diagnosed Engaged in in Care Prescribed ART Viral Suppression HIV Care Continuum for all PLWH HIV Care Continuum for youth 18-24
17 Diagnoses TRANSMISSION AMONG YOUNG BLACK MSM IS INCREASING COMPARED WITH OTHER YOUTH Diagnoses of HIV Infection Among Adolescents and Young Adults Aged Years, by Race/Ethnicity : 5, States and 5 U.S. Dependent Areas 3,750 2,500 1, Year of Diagnosis Black/African American Hispanic/Latino White Multiple Races Other
18 HEALTHCARE ACCESS & BLACK MSM ~ 60% of HIV-positive Black MSM unaware of status HIV-positive Black MSM less likely to access HIV care, be on ARVs and be adherent More likely than White MSM to have STIs
19 RACE-BASED DISPARITIES Black MSM diagnosed HIV-positive vs. other HIV-positive MSM k OR (CI) Disclosure of HIV status to partners ( ) Sexual risk - UAI with male partners ( ) HIV care access (MSM diagnosed HIV-positive) - Health insurance access ( ) - Clinical care visits ( ) - High CD4 (generic) ( ) - CD4 > 200 cells per ml ( ) - cart use ( ) - cart adherence ( )
20 HIV REPRESENTS A LIFETIME CHALLENGE FOR BLACK MSM 1 in 4 14x more likely to test HIV-positive than white MSM infected with HIV by age 25 60% infected with HIV by age 40
21 WHY THE DISPARITY IN HIV RATES? BROAD STRUCTURAL, SOCIAL & ECONOMIC FACTORS PSYCHOSOCIAL FACTORS SOCIAL CONTEXTUAL FACTORS BEHAVORIAL FACTORS
22 BROAD STRUCTURAL, SOCIAL & ECONOMIC FACTORS POVERTY CHILDHOOD SEXUAL ABUSE INCARCERATION UNEMPLOYMENT OTHER TRAUMA HOMELESSNESS VIOLENCE HOSTILE HOME ENVIRONMENTS
23 SOCIAL CONTEXTUAL FACTORS
24 EXPERIENCES OF DISCRIMINATION BY YOUNG BLACK MSM Multisite study of 351 racial/ethnic HIV-positive minority young MSM 100% Black Latino Multi-racial 75% 50% 25% % Racial Sexuality
25 PSYCHOSOCIAL FACTORS Social isolation
26 BEHAVIORAL FACTORS Elevated rates of HIV are NOT explained by differences in sexual risk behaviors or substance use
27 ADOLESCENCE: AN IN BETWEEN TIME
28
29 DEVELOPMENTAL CHALLENGES FOR YOUTH
30 DEVELOPMENTAL CHALLENGES FOR SEXUAL MINORITY YOUTH
31 ENGAGEMENT IN CARE REQUIRES HIGHER EXECUTIVE FUNCTIONS ENGAGEMENT
32 RESILIENCE
33 LINKAGE & RETENTION
34 CASE STUDY Stephen Video Blog - Part 2 June 1, Confession time. I still haven t been to the doctor. Camilla s all over my case. What a messed up year I ve been lonely and depressed. Hadn t talked much about my status until this one guy. I told him because I felt bad about not telling the first guy. We were being safe and all but still He flipped out God, we hadn t even done anything yet. He even put some shit up on Instagram no names, but it scared me BAD. Sometimes I feel like I m screwed either way. Doctor tomorrow or deal with Camilla. Going tomorrow For real, for real this time.
35 Pop-up Question WHICH OF THE FOLLOWING PATIENT CASE SCENARIOS IS CONSIDERED SUCCESSFUL LINKAGE AND RETENTION IN CARE? A. STEPHEN HAS HIS FIRST VISIT 7 MONTHS AFTER DIAGNOSIS B. STEPHEN IS TAKEN TO THE CLINIC BY THE HIV COUNSELOR AND AN APPOINTMENT IS MADE WITH THE DOCTOR FOR THE FOLLOWING WEEK C. STEPHEN MEETS THE MEDICAL CASE MANAGER THE DAY OF HIS DIAGNOSIS AND THE NURSE PRACTITIONER, WHO HE SEES AGAIN 1, 3 AND 36MONTHS LATER. D. IS TAKEN TO THE CLINIC BY THE HIV COUNSELOR. HE MEETS WITH A MEDICAL CASE MANAGER AND THE NURSE PRACTITIONER WHO SEES HIM 1 MONTH LATER.
36 HIV/AIDS BUREAU PERFORMANCE MEASURES FOR LINKAGE AND RETENTION TO HIV MEDICAL CARE Linkage to HIV Medical Care: Number of persons who attending a routine HIV medical care visit within 3 months of HIV diagnosis HIV Medical Visit Frequency: Percentage of patients who had at least one medical visit in each 6 month period of the 24 month measurement period with a minimum of 60 days between medical visits
37 ADOLESCENT LINKAGE TO CARE National-level data on HIV care linkage and engagement for HIV-positive adolescents Within 32 months, 1172/1679 (69.8%) of adolescents were linked to care of which 1043/1172 (89%) were engaged in care. Only 62.1% (1043/1679) of adolescents were linked and engaged in care Morgan et al. AIDS and Behavior
38 DISPARITIES IN ENGAGEMENT IN HIV CARE Younger age is associated with lower rates of retention in care during the first two years following diagnosis Adolescents in treatment fail about one-third of scheduled visits, and approximately 30% of adolescents drop out of care after being engaged. 38
39 TRANSLATING THE GUIDELINES INTO PRACTICE How can providers translate these metrics to their own clinical practice? How frequently should youth be seen for routine HIV care? Is 3 months between diagnosis and linkage to care the right metric for youth?
40 HIV CARE FOR ADOLESCENTS
41 Stephen Video Blog - Part 3 CASE STUDY Well I did it. not sure if I m going back, though. Almost turned around and left before going in. Realized I could run into someone who knew me. So I kept an eye on the door the whole time, ready to run out. They gave me 20 pages of forms to fill out. Half the stuff I couldn t even answer. I left a lot blank. It s their problem now. They act all nice - like they mean it, but real recognize real! The nurse says this judgy thing about being so glad I finally came in. Really bish? She don t know anything about me. The doctor didn t look at me once just kept typing into the computer and asking questions. Got really awkward when he started being nosey asking me about sex. Now I think I m supposed to go to some lab or something.
42 Pop-up Question SORT THE FOLLOWING PATIENT ENGAGEMENT STRATEGIES FOR YOUTH AS: VERY IMPORTANT, IMPORTANT OR NOT IMPORTANT A. A POSITIVE AND RESPECTFUL PROVIDER-PATIENT RELATIONSHIP B. CLEAR, YET FLEXIBLE, CLINIC RULES C. IDENTIFYING PERSONAL SUPPORT (FAMILY OR PEERS) D. AN INTERDISCIPLINARY CARE PLAN E. DEVELOPING A CULTURALLY COMPETENT CLINIC AND STAFF F. USE OF YOUTH CENTERED TECHNOLOGY FOR COMMUNICATION G. ALL OF THE ABOVE
43 PATIENT, PROVIDER AND SYSTEM FACTORS AFFECTING ENGAGEMENT PATIENT PROVIDER ENGAGEMENT SYSTEMS
44 THE ENGAGEMENT MOMENT ENGAGEMENT
45 PATIENT, PROVIDER AND SYSTEM FACTORS AFFECTING RETENTION PATIENT PROVIDER RETENTION SYSTEMS
46 SYSTEMS OF CARE COMMUNITY HOSPITAL/ HEALTH CARE SETTING CLINIC PATIENT/ PROVIDER
47 PATIENT PERSPECTIVES NEW FOLLOW-UP RE-ENGAGEMENT
48 RE-ENGAGEMENT MOMENT RE-ENGAGEMENT
49 CAN T CONTROL Patient prior experiences Experiences before and after they see you
50 CAN CONTROL The clinic space The clinic staff Your own behavior and response to the patient
51 EFFECTIVE PATIENT-PROVIDER COMMUNICATION PATIENT PROVIDER
52 SETTING GOALS AND EXPECTATIONS PATIENT GOALS PROVIDER GOALS
53 UNPACKING CHALLENGES IN CARING FOR YOUNG BLACK MSM PROVIDER STRUGGLES
54 CHECK LIST VS DISCUSSION Sexual Risk Behavior Alcohol/ Drug Use Sexual Identity
55 PROVIDE COMPREHENSIVE WELLNESS
56 MEET YOUTH WHERE THEY ARE
57 EMPOWERMENT /ɪmˈpaʊəmənt/ noun enabling, equipping, emancipation, enfranchising
58 TAKEAWAYS PROVIDE RESPECT CREATE RELATIONSHIPS COMMUNICATE THOUGHTFULLY DEVELOP CULTURAL COMPETENCIES IT S A PROCESS NOT A DESTINATION
59 REFERENCES Hall, H. I., Frazier, E. L., Rhodes, P., Holtgrave, D. R., Furlow-Parmley, C., Tang, T.,... & Skarbinski, J. (2013). Differences in human immunodeficiency virus care and treatment among subpopulations in the United States. JAMA internal medicine, 173(14), Minniear, T. D., Gaur, A. H., Thridandapani, A., Sinnock, C., Tolley, E. A., & Flynn, P. M. (2013). Delayed entry into and failure to remain in HIV care among HIV-infected adolescents. AIDS research and human retroviruses, 29(1), Ulett, K. B., Willig, J. H., Lin, H. Y., Routman, J. S., Abroms, S., Allison, J.,... & Mugavero, M. J. (2009). The therapeutic implications of timely linkage and early retention in HIV care. AIDS patient care and STDs, 23(1), National Institutes of Mental Health. (2011). The Teen Brain: Still Under Construction. Retrieved April 12, 2016, from American Academy of Child and Adolescent Psychiatry. (2011). Teen Brain: Behavior, Problem Solving, and Decision Making. Retrieved April 12, 2016, from Problem-Solving-and-Decision-Making-095.aspx
60 REFERENCES DHHS Adult and Adolescent HIV Treatment Guidelines DHHS Panel on Antiretroviral Guidelines for Adults and Adolescents A Working Group of the Office of AIDS Research Advisory Council (OARAC). (2016). Guidelines for the use of Antiretroviral Agents in HIV-1 Infected Adults and Adolescents. Retrieved on April 12, 2016, from Barriers to Effective Communication Eliason MJ et al. 2001; Matthews WC et al Eliason, M. J., & Schope, R. (2001). Original research: Does don't ask don't tell apply to health care? Lesbian, gay, and bisexual people's disclosure to health care providers. Journal of the Gay and Lesbian Medical Association,5(4), Stall, R. et al. (2009). Running in Place: Implications of HIV Incidence Estimates Among Urban Men Who Have Sex with Men in the United States and Other Industrialized Countries. AIDS Behav. 13(4),
61 REFERENCES Hightow-Weidman, L.B. et al. (2011). Baseline Clinical Characteristics, Antiretroviral Therapy Use, and Viral Load Suppression Among HIV-Positive Young Men of Color Who Have Sex with Men. AIDS Patient Care and STDs. 25(S1), S9-S14. llett, G. A. et al. (2012). Comparisons of disparities and risks of HIV infection in black and other men who have sex with men in Canada, UK, and USA: a meta-analysis. The Lancet, 380(9839), Health Resources and Services Administration, HIV/AIDS Bureau. (n.d.). HAB Performance Measures: HIV/AIDS Bureau s Revised Performance Measure Portfolio. Retrieved April 12, 2016, from
62 REFERENCES Philbin, M. M., et al. & Adolescent Trials Network for HIV/AIDS Interventions. (2014). Factors affecting linkage to care and engagement in care for newly diagnosed HIV-positive adolescents within fifteen adolescent medicine clinics in the United States. AIDS and Behavior, 18(8), National Institutes of Mental Health. (2011). The Teen Brain: Still Under Construction. Retrieved April 12, 2016, from American Academy of Child and Adolescent Psychiatry. (2011). Teen Brain: Behavior, Problem Solving, and Decision Making. Retrieved April 12, 2016, from Behavior-Problem-Solving-and-Decision-Making-095.aspx.
63 RESOURCES U.S. Department of Health and Human Services, HIV/AIDS Bureau (HAB) HIV Performance Measures: National AETC Resource Center: in+care campaign: CDC Gay and Bisexual Men s Health:
64 RESOURCES Grant, R. M., Lama, J. R., Anderson, P. L., McMahan, V., Liu, A. Y., Vargas, L., & Montoya- Herrera, O. (2010). Preexposure chemoprophylaxis for HIV prevention in men who have sex with men. New England Journal of Medicine, 363(27), Krakower, D. S., & Mayer, K. H. (2016). The role of healthcare providers in the roll out of preexposure prophylaxis. Current Opinion in HIV and AIDS, 11(1), Grant, R. M., & Koester, K. A. (2016). What people want from sex and preexposure prophylaxis. Current Opinion in HIV and AIDS, 11(1), 3-9. Golub, S.A. (2012.) Impact of PrEP Messaging Factors on Comprehension, Adherence Motivation, and Risk Compensation Intentions [PowerPoint Slides]. Retrieved from conference/impact-of-prep-messaging-factors /
65 RESOURCES Calabrese, S., St. George, D., Callis, B., Buchelli, M. (2015.) Impact of PrEP Messaging Factors on Comprehension, Adherence Motivation, and Risk Compensation Intentions [PowerPoint Slides]. Retrieved from Prevention_Final.pdf Malebranche, D. (2015.) Beyond PrEP: Intersectionality, Reslience, & the Health of Black MSM [PowerPoint Slides]. Retrieved from Ard, K.L. (2015). PrEP in the Real World: Clinical Case Studies [PowerPoint Slides]. Retrieved from
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