Learning Objectives • Discuss risk factors and strategies to identify people with HIV who are lost to follow-up • Identify effective communication and educational tactics to improve re-engagement among people with HIV who have fallen out of care • Collaborate with community organizations to improve re-engagement in care for people with HIV • Incorporate trauma-informed care into practice to retain and re-engage people with HIV in care
HOW DO WE DEFINE LOST TO FOLLOW-UP? Clinic Definitions and Epidemiology
Retention in Care May Be a Bumpy Road for PWH Cyclical Cascade of HIV Care1 STAGE 1
STAGE 3
STAGE 2
HIV+ diagnosis
Linked to HIV care
Initiated ART
HIV+ rediagnosis
Relinked to HIV care
Reinitiated ART
Disengagement after positive test
Disengagement after linkage
STAGE 4 Early retention (<6 months)
Long-term retention (>6 months)
Disengagement within 6 months of ART
Disengagement after ≥6 months of ART
RE-ENGAGEMENT IN CARE
Collaborations between clinics and other organizations can help re-engage patients in care and encourage long-term retention.2,3 ART, antiretroviral therapy; PWH, people with HIV. 1. Ehrenkranz P, et al. PLoS Med. 2021;18(5):e1003651; 2. Winetsky D, et al. J Infect Dis. 2020;222(suppl 5):S392-S400; 3. Towe VL, et al. AIDS Behav. 2019;23(9):2315-2325.
How Do You Define LTFU? • Multiple clinic and research definitions of LTFU1 – A certain number of months (often 3-12) since the last appointment – Missed a certain number of appointments – No laboratory results within a certain number of months (often 6-12)
• CDC: Those who do not have 2 CD4 cell counts or viral load tests ≥3 months apart in 1 year2 • HRSA/IOM: Those who do not have ≥2 medical visits that were ≥90 days apart in the last year3 CDC, Centers for Disease Control and Prevention; HRSA, Health Resources and Services Administration; IOM, Institute of Medicine; LTFU, lost to follow-up. 1. Mirzazadeh A, et al. PLoS Med. 2022;19(3):e1003940; 2. CDC. Accessed June 5, 2023. https://www.hiv.gov/federal-response/policies-issues/hiv-aids-care-continuum/; 3. National HIV Curriculum. Accessed June 5, 2023. https://www.hiv.uw.edu/go/basic-primary-care/retention-care/core-concept/all.
Risk Factors for Becoming LTFU • Adolescents and young adults have lower rates of retention, poorer outcomes, and receive fewer prescriptions for ART1,2 • Patients with any challenges in SDOH show reduced retention in care3 • People experiencing depressive symptoms are at risk for worse HIV outcomes, particularly when combined with SUD and history of trauma4 – Likely a high rate of undiagnosed mental health issues among PWH
• People with SUD, particularly younger people and those not being treated for SUD, are more likely to miss office visits5 • PEH are less likely to be linked to care or remain in care6 • Though men are often more likely to have lower retention in care, women with HIV face unique challenges to retention in care, such as pregnancy or childcare barriers7 PEH, people experiencing homelessness; SDOH, social determinants of health; SUD, substance use disorder. 1. Tripathi A, et al. AIDS Res Hum Retroviruses. 2011;27(7):751-758; 2. Poliseno M, et al. AIDS Care. 2021;33(12):1621-1626; 3. Department of Health and Human Services (DHHS). Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/adherence-continuum-care?view=full; 4. Schranz AJ, et al. Curr HIV/AIDS Rep. 2018;15(3):245-254; 5. Hartzler B, et al. AIDS Behav. 2018;22(3):742-751; 6. Berthaud V, et al. Explor Res Clin Soc Pharm. 2023;9:100207; 7. Momplaisir FM, et al. AIDS. 2018;32(2):133-142.
What Happens When the Healthcare System Is Unable to Engage Patients? Lack of Viral Suppression
Life expectancy
Comorbidities
Transmission
• Greater risk of death for patients LTFU1,2
• CVD can arise even in virally suppressed patients, but the risk is much higher in those who are not suppressed1,5
• PWH who are not in care are less likely to be virally suppressed and, therefore, more likely to transmit HIV to sexual partners1
• Greater risk of AIDSdefining and non–AIDSdefining cancer in those not virally suppressed6
• PWH not in care account for approximately 40% of new HIV transmissions7
• Shorter life expectancy without early and consistent use of ART3 • Missed clinic visits linked to greater mortality4
Healthcare costs • Increased costs with lack of retention in care through increased transmission and comorbidities8 • Retention in care programs reduces overall healthcare costs8
CVD, cardiovascular disease. 1. Krentz HB, et al. AIDS Care. 2021;33(1):114-120; 2. Department of Health and Human Services (DHHS). https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adultand-adolescent-arv/adherence-continuum-care; 3. Marcus JL, et al. JAMA Netw Open. 2020;3(6):e207954; 4. Mugavero MJ, et al. Clin Infect Dis. 2014;59(10):1471-1479; 5. Feinstein MJ, et al. Circulation. 2019;140(2):e98-e124; 6. Park LS, et al. Ann Intern Med. 2018;169(2):87-96; 7. Li Z, et al. MMWR Morb Mortal Wkly Rep. 2019;68(11):267-272; 8. Maulsby C, et al. AIDS Behav. 2017;21(3):643-649.
Strategies to Identify Patients LTFU • EMR review for missed appointments1 • Identify risk factors for becoming LTFU2 – PEH – Recent incarceration – Transportation challenges – Challenges in SDOH
• Create flag so that providers can express concern about a patient’s ability to remain in care EMR, electronic medical record. 1. Palacio-Vieira J, et al. BMC Public Health. 2021;21(1):1596; 2. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-andadolescent-arv/adherence-continuum-care?view=full.
Leveraging Your Health Department Data to Care
• Clinics can collaborate with the local health department to identify patients LTFU through HIV surveillance data • D2C programs can also offer other support services to aid in re-engagement in care • Models may also include only health department– initiated outreach or only provider-initiated outreach
D2C Combination Health Department and Provider Model2 Health Department (HD)
1 • Generate list of clients identified by HIV surveillance as “not in care” • HIV surveillance and prevention staff may check additional sources to 2 confirm “not in care” status and gather information needed for follow-up 3
HCPs and HD staff communicated about care status of patients on “not in care” list
HCP
4
Patients contacted by HIV prevention or linkage staff for linkage or re-engagement assistance
Patients contacted by HCP for linkage or re-engagement assistance
5 Patient care visit scheduled
Client/patient
D2C, data to care; HCP, healthcare provider. 1. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/pdf/funding/announcements/ps18-1802/CDC-HIV-PS18-1802-AttachmentJ-Data-to-Care-Program-Guidance.pdf; 2. National HIV Curriculum. Accessed June 5, 2023. https://www.hiv.uw.edu/go/basic-primary-care/retention-care/core-concept/.
Who in Your Practice Can Help Identify Patients LTFU? • Patient navigators • Peer advocates • Outreach workers • Case managers • Nurses or other HCPs • Social workers
The staff to identify patients LTFU will depend on the size of your clinic, staff duties, and methods for identification. Palacio-Vieira J, et al. BMC Public Health. 2021;21(1):1596.
Collaborating With Community Organizations to Identify Patients LTFU • Shelters1 – May be a point of regular contact should a PEH not have a cell phone
• SUD treatment clinics1,2 – MOUD can be combined with ART
• SSPs2 – Role in linking to and navigating care – Advocates or peer support often available
• ASOs3 – Partner with FQHCs or other clinics ASO, AIDS Service Organization; FQHC, Federally Qualified Health Center; MOUD, medication for opioid use disorder; SSP, syringe service program. 1. Jones MD, et al. PLoS One. 2023;18(1):e0276852; 2. Broz D, et al. Am J Prev Med. 2021;61(5 suppl 1):S118-S129; 3. TargetHIV. https://targethiv.org/library/supporting-asosand-cbos-engaging-and-retaining-plwh-care-and-treatment-through-sustainable.
ACHIEVING RETENTION IN CARE AND VIRAL SUPPRESSION What Will Work for Your Clinic?
Strategies to Contact Patients LTFU • Mail a letter or send an email • Call patients • Coordinate with community partners • Text/send social media messages • Outreach to emergency contact • Home visit to last known address • Internet or secondary database searches
Palacio-Vieira J, et al. BMC Public Health. 2021;21(1):1596.
Interventions to Encourage Returning to and Retention in Care • Acknowledge and address competing priorities, such as mental health or social needs • Obtain comprehensive picture of the patient’s complete health and needs • Promote empowerment • Provide information on medications, access to care, and treatment rights • Build staff-patient relationships • Build patient knowledge and skills • Provide low-barrier options for care Clinicians should incorporate trauma-informed care for every patient. Palacio-Vieira J, et al. BMC Public Health. 2021;21(1):1596.
Facilitators of Retention in Care Peer navigator1 Patient education1
Transportation assistance1
Incentives2
Colocation of services1 Clinic flexibility1
1. Paisi M, et al. Health Expect. 2022;25(1):48-60; 2. Masson CL, et al. BMC Infect Dis. 2020;20(1):386.
Role of Peer Navigator in Retention in Care • Assist patients with appointments for wraparound services1 • Build support networks through shared backgrounds and community knowledge1,2 • Encourage medication adherence1 • Provide support throughout treatment pathways2 • Make multiple peer navigator training modules available that incorporate perspectives from various initiatives3-5 – Implementation guidelines, SOPs, client flow algorithms, reference documents
SOP, standard operating procedure. 1. San Francisco Department of Public Health. Accessed June 5, 2023. https://ciswh.org/wp-content/uploads/2017/07/HHOME-SFDPH.pdf; 2. Jugnarain DV, et al. J Viral Hepat. 2022;29(1):43-51; 3. FHI360. Accessed June 5, 2023. https://www.fhi360.org/sites/default/files/media/documents/resource-linkages-peer-navigation-facilitators-guide.pdf; 4. AIDS Education & Training Center (AETC) Program. Accessed June 5, 2023. https://aidsetc.org/resource/patient-navigator-program-tools; 5. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/effective-interventions/treat/hiv-navigation-services/index.html.
Improving Access to Care in a Fragmented System • Colocating HIV care, mental health care, and social services results in improved patient outcomes, including viral suppression and retention in care1,2 • Establishing a patient-centered referral pattern can help streamline a clinic’s workflow and increase patient retention in care3 • Peer navigator or care coordinator to help patients obtain care at different locations or within 1 large center4 • Telehealth can remove transportation and some time constraint barriers5 1. Dunleavy S, et al. AIDS Patient Care STDS. 2019;33(12):538-548; 2. Mizuno Y, et al. AIDS Care. 2019;31(11):1323-1331; 3. Witte S, et al. Int Health Trend Perspect. 2022;2(1):1-14; 4. San Francisco Department of Public Health. Accessed June 5, 2023. https://ciswh.org/wp-content/uploads/2017/07/HHOME-SFDPH.pdf; 5. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/adherence-continuum-care?view=full.
Educational Intervention to Improve Appointment and ART Adherence • Education is particularly effective when combined with other interventions1 • Tailor education to patient’s knowledge level and health literacy level2 – Discuss importance of adherence, what viral load and CD4 counts mean, HIV outcomes when suppressed vs not, and consequences of not staying in care
• Use positive reinforcement for adherence or attendance2 • Use motivational interviewing to tailor education2 • Provide resources and support to reinforce education2 • Education can be both verbal and written2 • Empower the patient to care for themselves2
1. Pugh LE, et al. J Infect Public Health. 2022;15(10):1053-1060; 2. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-andadolescent-arv/adherence-continuum-care.
Patient Perspectives on Re-Engaging in Care What Has Worked for Them
[Navigator] motivated me to make that appointment, and [the navigator] keeps calling, keeps calling, keeps calling! I need to call my doctor, or I need to get to where I usually go, so that way I can tell [navigator] I’ve been to the doctor.1 Since I been coming [to the support group], you get to know, like, how other people are living with the virus, you don’t have to be alone.2
A stable relationship with your doctor will keep you comfortable with coming and opening up to the doctor, letting them know everything they need to know to make you better.3 I have to admit the [program’s name] makes it easy, because they give you incentives. Cash incentives if you comply…they do like a text messaging thing every day. But it reminds you about your medicine.4
1. Parnell HE, et al. AIDS Behav. 2019;23(suppl 1):61-69; 2. Amutah-Onukagha N, et al. AIDS Patient Care STDS. 2018;32(4):119-128; 3. Taylor BS, et al. AIDS Patient Care STDS. 2018;32(9):368-378; 4. Carey JW, et al. AIDS Patient Care STDS. 2018;32(5):191-201.
Incorporating Medical Case Management HIV Care Coordination Program
• The CCP was a medical home model
Clinical Outcomes With the CCP After 12 Months
• Included outreach after any missed appointment, social services and benefits assessment, team communication via case conferences, patient navigation, ART adherence support, and structured health education • Patients could meet weekly, monthly, or quarterly with staff
Patients, %
– Care coordinator, medical center liaison, patient navigator, medical care provider, and directly-observed therapy specialist
100 90 80 70 60 50 40
Usual care CCP
88
66
63 49
30 20 10 0 Re-engaged in care
Viral suppression
N=7337 PWH who were living in New York City and were eligible for local Ryan White Part A services were enrolled in the Care Coordination Program (CCP) from December 2009 to March 2013. Patients were compared with 6812 matched patients who were not enrolled in the CCP. Irvine MK, et al. AIDS Res Ther. 2021;18(1):70.
Incorporating Peer Navigators Into HIV Care • Peer navigators (anyone with a close understanding of the community served) interacted an average of 11 days over 6 months per patient
• Most contact (63%) was virtual (phone, text, social media, or email) – If in person, 72% occurred at the program site a
100
Patients, %
• Peer navigators most often provided coaching and education, emotional support, and appointment reminders
Changes in Clinical Outcomes From Baseline to 6 Months With a Peer Navigator 84.7a
80 60
91.3a 66.9
At enrollment 6 months postenrollment
49.9
43.7a
40 22.4
20 0 Primary care visit
Active ART prescription
Viral suppression
P<0.000. N=10 Ryan White Program locations across the US that implemented a peer navigator program into their multidisciplinary HIV care team. This involved a training curriculum and implementation guide. Drainoni ML, et al. J HIV/AIDS Soc Serv. 2020;19(3):204-219.
TIPS AND TRICKS FOR RE-ENGAGING ADOLESCENTS AND YOUNG ADULTS IN HIV CARE
The Status of AYA With HIV
50
24
38
0 Overall
Aged 18-24 years
Patients, %
PWH Who Experienced Homelessness in the Past 12 Months 100 50 9
14
0 Overall
Aged 18-24 years
Patients, %
100
PWH Who Took All Doses of ART Over the Last 30 Days 100
61 38
50 0 Overall
Aged 18-24 years
Average Stigma Score Among PWH: Highest Among AYA Score Out of 100
Patients, %
PWH Who Missed ≥1 Medical Appointment in the Past 12 Months
100 50
31
37
Overall
Aged 18-24 years
0
AYA have a higher risk for becoming LTFU at every stage of the HIV care continuum. AYA, adolescents and young adults. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/group/age/viral-suppression.html.
Considerations When Treating AYA With HIV • Decision-making capacity still developing1 • May have higher rate of risk-taking behavior or less understanding of consequences of behavior1 • Desire to fit in with peers1 • Lack of fully developed cognitive function1 • Social support can reduce stigma and depression around HIV2 • Physical development is still occurring, particularly for perinatally infected AYA1 • Perinatally infected AYA may have greater disease burden, less autonomy, and higher mortality risks1
1. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/adolescents-and-young-adults-hiv?view=full; 2. Casale M, et al. J Affect Disord. 2019;245:82-90.
Facilitating Trust With AYA Encouraging Retention in Care
• Use motivational interviewing to acknowledge issues related to autonomy and other issues that may arise1 – Can improve adherence
• Be empathetic1 • Patient-centered communication that isn’t confined to HIV1 • Incorporate implicit bias training into practice1 • Provide gender-affirming care1 • Discuss self-management techniques to improve adherence and sense of control2 • Incorporate peer-led interventions3 • Provide adolescent-oriented resources to help their engagement in care4 1. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/adolescents-and-young-adults-hiv?view=full; 2. Crowley T, et al. AIDS Behav. 2020;24(2):592-606; 3. Navarra AD, et al. AIDS Behav. 2022:1-17; 4. AETC Southeast. Accessed June 5, 2023. https://www.seaetc.com/provider-resources/helpful-links/.
Adapting Your Clinic to Appeal to AYA Incorporate youth advisory board1
Include lay counselors or patient navigators in a multidisciplinary team2
Provide disclosure and ART adherence support3
Provide staff training on adolescent development2
Consider a day/time specifically for AYA2
Offer age-appropriate educational materials and extracurricular activities, including community activities2,3
Décor of clinic4
Provide comprehensive patient education about ART, sexual and reproductive health, and HIV as a chronic disease3 1. Cluver D, et al. IDS Care. 2021;33(7):858-866; 2. Woollett N, et al. PLoS One. 2021;16(7):e0253984; 3. Casale M, et al. AIDS Patient Care STDS. 2019;33(6):237-252; 4. Tanner AE, et al. AIDS Care. 2014;26(2):199-205.
Practical Issues That May Affect Care Engagement • Discuss implications of remaining on parents’ insurance and potential lack of confidentiality1,2 – Can be source of concern for patients and could reduce retention in care and ART adherence – May be able to send EOB virtually or to an alternate address
• AYA may lack knowledge of how to refill ART at a pharmacy3 • Address concerns about stigma related to disclosure of HIV status to family and friends3 • Transition to adult clinic is a particularly challenging time and increases risk for becoming LTFU3 EOB, explanation of benefits. 1. Doll M, et al. J Adolesc Health. 2018;62(4):424-433; 2. Chu CT, et al. R I Med J (2013). 2020;103(8):19-21; 3. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/adolescents-and-young-adults-hiv?view=full.
Strategies for Re-Engaging AYA in HIV Care • Text or use social media instead of a phone call or leaving a voicemail1-3 • Use more reminders than for adults (especially text messages for adherence)2 • Offer flexible clinic hours to help facilitate appointment attendance4 • Discuss logistical barriers, such as transportation4 • Encourage peer support1 • Provide financial incentives5 • Use adolescent-friendly social media3 1. Enane LA, et al. Curr Opin HIV AIDS. 2018;13(3):212-219; 2. Obiodun O, et al. J Adolesc Health. 2021;68(4):728-736; 3. HRSA. Accessed June 5, 2023. https://ryanwhite.hrsa.gov/about/parts-and-initiatives/part-f-spns/previous-spns-initiatives/spns-social-media; 4. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/adolescents-and-young-adults-hiv?view=full; 5. Casale M, et al. AIDS Patient Care STDS. 2019;33(6):237-252.
UNDERSTANDING WOMEN WITH HIV WHO ARE LTFU
Status of Retention in Care for Women With HIV • 23% of women missed ≥1 medical appointment in the last 12 months (vs 20% of all people with HIV)1 • Among pregnant women, those who were younger, newly diagnosed, or in a serodiscordant relationship were more likely to become LTFU2 • Many women fall out of care in the postpartum period3-5 – Studies have shown the incidence of becoming LTFU was 21% by 12 months and 40% (though there are reports of up to 60%) by 5 years postpartum – Compounded by postpartum depression – May prioritize infant care over their own care 1. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/group/gender/women/viral-suppression.html; 2. Angela KH, et al. BMJ Open. 2020;10(12):e038311; 3. DHHS. Accessed June 5, 2023. https://clinicalinfo.hiv.gov/en/guidelines/perinatal/postpartum-follow-up?view=full; 4. Yohannes NT, et al. J Int AIDS Soc. 2021;24(5):e25740; 5. Momplaisir FM, et al. AIDS. 2018;32(2):133-142.
Effect of IPV on Engagement in HIV Care
– Approximately 35% of women with HIV experience IPV in their lifetime, and 4.4% experienced it in the last 12 months – Most common in those aged 25 to 34 years
Women Experiencing IPV in the Last 12 Months Have Worse HIV Outcomes 100
Patients, %
• Women with HIV likely experience higher levels of violence and trauma than the general population
92.9
60
79.9
77.4a
80
68.9b
53.3
IPV last 12 months 64.5 52.2b
44
41.1a
40 20
No IPV last 12 months 80.2c
23
20.6
0 Unmet Depression ancillary needs
Retained in care
Currently on Sustained viral Missed HIVART suppression related appointments
Collaboration between HIV clinics and IPV shelters or organizations can help improve re-engagement in HIV care. a
P≤0.01; bP<0.001; cP<0.05. IPV, intimate partner violence. Lemons-Lyn AB, et al. Am J Prev Med. 2021;60(6):747-756.
A Focus on HIV Care for Black Women • Black women made up 54% of new HIV diagnoses for women in 2019 despite being 13% of the population of women1 – Identified as a priority population in the National HIV/AIDS Strategy2
• Lower retention rates compared with White women3 • Often a failure to recognize intersectionality of race, gender, and social determinants of health4 – Intersectionality places people at a disadvantage and higher HIV risk in general
• “Strong Black woman” stereotype can often be detrimental to mental health5 1. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/group/gender/women/diagnoses.html; 2. DHHS. Accessed June 5, 2023. https://www.hiv.gov/federal-response/nationalhiv-aids-strategy/national-hiv-aids-strategy-2022-2025/; 3. Lambert CC, et al. J Assoc Nurses AIDS Care. 2018;29(4):487-503; 4. Rao D, et al. Am J Public Health. 2018;108(4):446448; 5. Carter L, et al. Women Ther. 2019;42(3-4):289-300.
Barriers to and Facilitators of Retention in Care for Pregnant and Postpartum Women With HIV Barriers • Stigma and fear of disclosure • Inadequate social support • Low health literacy • Challenges with SDOH • Pregnancy-related symptoms • Poor mental health • IPV • Distance from clinic • Negative provider attitudes • Family responsibilities Humphrey J, et al. PLoS Glob Public Health. 2021;1(10):e0000004.
Facilitators • Belief about the importance of care for themselves and their child • Support from partner and family • Integrated HIV and maternal/child health care • Services to address mental health and IPV • Expedited care for virally suppressed women
Establishing a Social-Ecological Model of Retention in Care for Pregnant and Postpartum Women
Individual
Peer & Family
• Age and health literacy • Physical and mental health • Stigma and disclosure • Health attitudes and beliefs • Health preferences • Adherence to ART
• Partner support • Stigma and disclosure • Poverty and food insecurity • Children and dependents
Community & Society • Health services access • Economic access • Community support and social networks • Culture and tradition • Gender • Religion
ANC clinic Pregnancy à transition to ANC
HIV clinic
Delivery à transition to PNC Complete PMTCT follow-up à transition to HIV clinic
PNC clinic
Environment Contextual • Distance and weather • Service quality and resources Healthcare • Cost and efficiency • Social work and counselors • Provider-patient relationship • Occupational workload • Medical knowledge
Retention in care will optimally involve individual, peer, community, and environmental collaboration in addition to linked OB/GYN and HIV care. ANC, antenatal clinic; OB/GYN, obstetrics and gynecology; PMTCT, prevention of mother-to-child HIV transmission; PNC, postnatal clinic. Humphrey J, et al. PLoS Glob Public Health. 2021;1(10):e0000004.
Strategies to Re-Engage Women With HIV • Use of peer navigators or counselors1,2 – Resulted in 10% increase in retention in care and viral suppression among women of color – Peer navigators helpful for pregnant or postpartum women
• Colocated care, including with OB/GYN1,3 – Case managers can assist with communication across providers if colocated care isn’t available
• Provide childcare during appointment4 • Address mental health and challenges in SDOH3 • Support disclosure of HIV status to partner3 • Use automatic calls and texts to reach patients3 1. Rajabiun S, et al. AIDS Behav. 2022;26(2):415-424; 2. Vrazo AC, et al. Trop Med Int Health. 2018;23(2):136-148; 3. Momplaisir FM, et al. AIDS. 2018;32(2):133-142; 4. Judd RT, et al. AIDS Care. 2022;34(5):545-553.
STRATEGIES FOR RE-ENGAGING PATIENTS WITH HIV AND SUD IN CARE
The Status of HIV Care for PWH and SUD • Lower rates of retention in care with SUD1 • Male PWID have lower viral suppression and care engagement rates compared with other PWH2 • PWID retention in care may be affected by SDOH: in 2018, 64% experienced homelessness and 21% had no health insurance2 • A survey of participants in the CDC Medical Monitoring Project showed that 79% of PWID had an unmet ancillary need outside of HIV care3 – Most common were dental care, drug or alcohol treatment, transportation assistance, and peer group support
• PWID are more likely to experience healthcare discrimination4 PWID, people who inject drugs. 1. Hartzler B, et al. AIDS Behav. 2018;22(3):742-751; 2. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/group/hiv-idu.html; 3. Dasgupta S, et al. J HIV/AIDS Soc Serv. 2021;20(4):271-284; 4. Dasgupta S, et al. AIDS Care. 2021;33(9):1146-1154.
A Closer Look at Harm Reduction Harm reduction is any positive change, as defined by the person at risk for harm. It is meeting people where they are and providing the tools and information they need to keep themselves and those around them healthy1
• Harm reduction . . . 2,3 – Provides nonjudgmental care – Fights discrimination – Does not require abstinence – Is not against abstinence – Does not attempt to minimize or ignore the real and tragic harm and danger associated with licit and illicit drug use 1. Adapted from the Chicago Recovery Alliance: Dan Bigg, Director and Cofounder; 2. National Harm Reduction Coalition. Accessed June 5, 2023. http://www.harmreduction.org; 3. Harm Reduction International. Accessed June 5, 2023. https://www.hri.global/what-is-harm-reduction.
Harm Reduction Goes Beyond Preventing HIV and Viral Hepatitis • Information, education, counseling, and outreach
• Safer injection technique
• MOUD
• Immunization
• SSP • Combined mental health services/MOUD/SSP • Prevention of injection-related wounds • Prevention of secondary infections (endocarditis, cotton fever) • Overdose prevention and response STI, sexually transmitted infection. National Harm Reduction Coalition. Accessed June 5, 2023. https://harmreduction.org/.
• Alternatives to injecting • STI testing • Safe-sex supplies • Case management • Addiction treatment • Employment assistance
What Is MOUD? • MOUD1 – Is safe and effective in suppressing illicit opioid use – Improves physical and mental well-being – Improves adherence to ART
• Retention in MOUD program1 – Substantial reductions in the risk for overdose mortality – Substantial reductions in the risk for all-cause mortality
MOUD is not a prerequisite for HIV treatment!
Buprenorphine1,2 • Partial opioid agonist • Mono-product • Combination product with naltrexone (4:1) • Any provider can prescribe this for up to 30 patients before training is required
Naltrexone1,3 • Opioid antagonist • Oral (off-label for OUD) • Injectable (OUD) • Any provider can prescribe either formulation and can administer the injectable
Methadone1,4 • Full opioid agonist • Given only in the context of an accredited Opioid Treatment Program • Could be prescribed by any provider via telehealth during the COVID-19 pandemic in either 14- or 28-day increments
OUD, opioid use disorder. 1. Sordo L, et al. BMJ. 2017;357:j1550; 2. National Academy for State Health Policy. Accessed June 5, 2023. https://nashp.org/feds-revise-buprenorphine-prescribingrequirements-again/; 3. Substance Abuse and Mental Health Services Administration (SAMHSA). Accessed June 5, 2023. https://www.samhsa.gov/medications-substance-usedisorders/medications-counseling-related-conditions/naltrexone; 4. SAMHSA. Accessed June 5, 2023. https://www.samhsa.gov/medications-substance-usedisorders/medications-counseling-related-conditions/methadone.
Strategies to Re-Engage PWH and SUD • Collaborate with SSPs to identify patients and link them to care1-3 – Approximately 50% of PWID use SSPs – SSPs can provide referral to wraparound services, HIV treatment, medication storage, and MOUD – Use outreach services
• Link to care following release from incarceration through either peer navigator or mobile healthcare with integrated services4 • Offer colocated wraparound services, particularly in clinics with flexible hours4 • Increase access to MOUD3 – Can be integrated with HIV treatment
• Case management to address the need for multidisciplinary care3 1. CDC. Accessed June 5, 2023. https://www.cdc.gov/hiv/group/hiv-idu.html; 2. Broz D, et al. Am J Prev Med. 2021;61(5 suppl 1):S118-S129; 3. Cunningham CO, et al. Subst Use Misuse. 2011;46(2-3):218-232; 4. Taweh N, et al. Int J Drug Policy. 2021;96:103283.
Combining HIV Treatment With MOUD Opiate Treatment Outpatient Program
• Provides care to patients with high rates of homelessness, SUD, and mental health comorbidities • Provides MOUD, HIV primary care, mental health services, DOT, and case management a
Integrated MOUD and HIV Care Shows Better HIV Outcomes and Engagement 100
Patients, %
• OTOP is an integrated care clinic at Zuckerberg San Francisco General
HIV care at methadone clinica HIV clinic adjacent to methadone clinic Community clinic 93
93
79
74
80
62
60
62
40 20 0 Retention in care
At the time of publication, OTOP primarily offered methadone as the MOUD, but buprenorphine is now offered as well. DOT, directly observed therapy; OTOP, Opiate Treatment Outpatient Program. Simeone C, et al. Addict Sci Clin Pract. 2017;12(1):19.
Viral suppression
Locating Resources for Harm Reduction in Your Community • Look for syringe service or needle exchange programs, naloxone distribution locations, MOUD clinics, and local recovery alliances Syringe Services Programs1
Naloxone Locator2
1. North American Syringe Exchange Network (NASEN). Accessed June 5, 2023. https://nasen.org/; 2. National Harm Reduction Coalition. Accessed June 5, 2023. https://harmreduction.org/resource-center/harm-reduction-near-you/.
RE-ENGAGING PATIENTS WITH HIV AND MENTAL HEALTH COMORBIDITIES IN CARE
HIV Care in PWH and Mental Health Comorbidities • Approximately half of all PWH have ≥1 mental health comorbidity1 • Leads to negative outcomes at each step of care continuum2 • Mental health comorbidities often overlap with challenges in SDOH, including stigma and SUD2 • PWH and mental health comorbidities are less likely to achieve viral suppression than those without mental health comorbidities1 – Can lead to apathy about health care and missed appointments – Depression significantly related to retention in care
• Increased retention in care with mental health services utilization1 1. Rooks-Peck CR, et al. Health Psychol. 2018;37(6):574-585; 2. Remien RH, et al. AIDS. 2019;33(9):1411-1420.
Routine Assessment Is the First Step • Numerous mental health screening tools available1,2 – Not used as often as they should be due to lack of capacity at appointments, stigma, or lack of referral process
• Must be followed by either treatment or referral for additional services or treatment1
1. Remien RH, et al. AIDS. 2019;33(9):1411-1420; 2. National HIV Curriculum. Accessed June 5, 2023. https://www.hiv.uw.edu/page/mental-health-screening/gad-2.
Potential Solutions to Improving Access to Mental Health Care • Shift screening to providers other than mental health professionals (task shifting) – Screening can occur when taking patients to exam rooms – May include treatment as well
• Triage intervention intensity based on patient need – Can incorporate peer navigators
• Apply treatment methodologies to co-occurring mental health comorbidities, such as depression and anxiety • Can incorporate telehealth or internetbased cognitive behavioral therapy Remien RH, et al. AIDS. 2019;33(9):1411-1420.
Integrating HIV Care and Mental Health Services Single-Facility Integration “one-stop shopping”
Integrated Care Using Case Managers (non-physician coordinates care and develops integrated HIV + MH ± SUD care plan and facilitates referrals)
Mental health sector
Onsite HIV ± SUD ± MH services
Multi-Facility Integration Onsite PCP ± HIV ± SUD ± MH services
Offsite referrals
Morespecialized care
System Integration
HIV sector
Integrated care, whether at clinical, organizational, or system level, produces better HIV outcomes and adherence. MH, mental health; PCP, primary care provider. Chuah FLH, et al. Health Policy Plan. 2017;32(suppl 4):iv27-iv47.
Primary care sector
Strategies to Re-Engage PWH and Mental Health Comorbidities in Care Integrate mental health services into HIV care through collaborative care, merging services as coordinated care, collocating care in 1 location, or creating 1 treatment plan around HIV and mental health1 Use case managers to coordinate care1 Warm handoff when referring to a mental health provider, particularly if offsite2 Trauma-informed care approach3 Take patient preferences into account when referring, including race or gender preferences for mental health professionals4 Combat stigma through peer support; partners, family, or friends; and acknowledging its potential presence in the healthcare system5,6 1. Chuah FLH, et al. Health Policy Plan. 2017;32(suppl 4):iv27-iv47; 2. LeGrand SH, et al. AIDS Patient Care STDS. 2022;36(suppl 1):S74-S85; 3. Sweeney A, et al. J Psych Adv. 2018;24(5):319-333; 4. Swift JK, et al. World Psychiatry. 2021;20(3):316-317; 5. Andersson GZ, et al. Lancet HIV. 2020;7(2):e129-e140; 6. Nyblade L, et al. BMC Med. 2019;17(1):25.
Patient-Centered HIV Care Model Addressing Mental Health Comorbidities
a
P<0.01; bP≤0.001; cP<0.05. Byrd KK, et al. AIDS Behav. 2020;24(12):3522-3532.
Integrated Care for Patients With Mental Health Comorbidities Improved Retention in Care and Viral Suppression
Patients, %
• Focused on patients with mental health comorbidities and a history of missed appointments and medication interruptions • Integrated community-based pharmacists with medical providers • Built upon existing medication therapy management model • Collaborated to identify therapyrelated problems • Implemented quarterly follow-up pharmacy visits
100 90 80 70 60 50 40 30 20 10 0
Baseline Follow-up 60
90b
86b
79
68a
68c
66
50
Retention in Viral care suppression
Retention in Viral care - SUD suppression SUD
CHALLENGES IN HIV CARE FOR PEH
The Status of HIV Care Among PEH
• Viral load is linked to degree of housing stability1 • Barriers to care compounded by competing priorities, prevalence of stigma, incarceration, mental health comorbidities, SUD, and poverty3
PWH Counted as Homeless, by Sheltered Status, 20224 People, n
• PEH are ~50% less likely to achieve viral suppression vs those with stable housing1,2
4500 4000 3500 3000 2500 2000 1500 1000 500 0
4162 3673
2075
Sheltered in transitional housing
Unsheltered
Sheltered in emergency shelter
1. San Francisco AIDS Foundation. Accessed June 5, 2023. https://www.sfaf.org/collections/beta/homelessness-linked-to-hiv-infection-and-low-rates-of-viral-suppression/; 2. Berthaud V, et al. BMC Infect Dis. 2022;22(1):144; 3. Clemenzi-Allen AA, et al. Curr HIV/AIDS Rep. 2020;17(3):259-267; 4. Statista. Accessed June 5, 2023. https://www.statista.com/statistics/962336/number-homeless-people-hiv-aids-us-sheltered-status/.
Clinic Considerations to Improve Retention in Care • Flexible scheduling and rescheduling, without penalty for no-shows • Daily drop-in appointments • Support for Medicaid and ADAP enrollment • Care that is available at a variety of clinical locations rather than insistence on patients seeing specialists (EMR sharing) • Transportation vouchers • Flexible refill policy for lost or stolen medication • Trauma-informed care • Syringe access • Wraparound support for other SDOH (may be done simultaneously with ART initiation) ADAP, AIDS Drug Assistance Program. Courtesy of Sarah Rowan, MD.
Medication Storage as a Factor in Retention in Care • Patients often lack a secure space in which to store their medication1 – Concerns about theft and challenges getting a refill if it is stolen • Can discourage retention in care if the patient experiences challenges getting or keeping medication
• Medication adherence and retention in care can be improved by allowing patients to store their medication at the clinic or another facility, such as an SUD clinic2 – Maintains regular contact with the patient
• Medication lockers may be available in certain cities3 1. Paudyal V, et al. Public Health. 2017;148:1-8; 2. National Health Care for the Homeless Council. Accessed June 5, 2023. www.nhchc.org; 3. POZ. Accessed June 5, 2023. https://www.poz.com/article/medication-lockers-help-homeless-people-hiv.
Who Are Potential Partners to Identify and Re-Engage PEH? Specialty clinics
Sexual health clinics
Pharmacy partners
Outreach organizations for PEH
SUD treatment centers
Community clinics or FQHCs
Shelters or housing services
Syringe service providers
Departments of Public Health
Effect of Housing on HIV Outcomes Among PEH • PEH with HIV in Washington, DC had significantly higher retention in care if they had receiving housing vouchers1 • PEH with HIV in New York City who had access to rental assistance, housing placement assistance, and supportive permanent housing were nearly 3 times more likely to be retained in care compared with other PEH with HIV2 • PEH with HIV who transitioned to stable housing with the assistance of patient navigators and mobile interdisciplinary care teams showed improved outcomes3 – 2× the rate of retention – 2× as likely to be prescribed ART – 1.6× as likely to achieve viral suppression
1. Aquino G, et al. J Community Health. 2021;46(5):861-868; 2. Terzian AS, et al. AIDS Behav. 2015;19(11):2087-2096; 3. Rajabiun S, et al. Am J Public Health. 2018;108(suppl 7):S539-S545.
Improving Retention in Care Among PEH With HIV POP-UP San Francisco
• POP-UP clinic is a low-barrier primary • At 12 months: care clinic % – No need for scheduled appointments – Financial incentives for visits and attaining HIV viral suppression – Enhanced outreach via peer navigators – Integrated social work and case management services
• In-service clinical training and weekly clinician conferences to facilitate care coordination Hickey MD, et al. J Infect Dis. 2022;226(suppl 3):S353-S362.
– 85 remained enrolled in POP-UP – 70% had ≥1 follow-up visit each 4-month period
– 59% had ≥1 gap of 90 days between visits
– 12 median patient visits over 12 months
SHAPING HIV PRACTICE BY INTEGRATING TRAUMA-INFORMED CARE
Exploring Trauma Faced by PWH • Trauma is an event experienced by • PWH are 20 times more likely to a person that leaves a long-term have experienced trauma than negative effect general population • Trauma can be experienced by an individual or an entire population – Often intersectional
• Trauma may be due to many things, including adverse childhood experiences, race or ethnicity, sexual orientation, mental health comorbidities, and homelessness
Sources of Trauma Related to HIV Care • HIV care (invasive procedures, staff) • Systemic abuse and/or insensitivity • Cost of care and benefits navigation • Obstacles to care • Hypervigilance of labs, diet, etc • Medications for life – sometimes many pills • Anniversary dates • Stigma
National Alliance of State and Territorial AIDS Directors (NASTAD). Accessed June 5, 2023. https://targethiv.org/sites/default/files/file-upload/resources/NASTADTraumaToolkit_01242019.pdf.
We Lead the Change Through Our Words Language Matters
• Using clinically accurate and medically appropriate language matters when talking with, and documenting about, PWH1,2 • Stigma and stereotypes faced by PWH can impede solutions that will work to end homelessness2 – Person-first language can shift understanding of structural and societal causes
• Person-first language can reduce stigma, increase patient willingness to seek treatment, reduce negative provider perceptions of PWH, and improve care3-5 – Use “a person experiencing homelessness” instead of “homeless person” – Use “a person who uses drugs” instead of “addict” – Use “a person with HIV” instead of “HIV infected” – Use “a person with a mental illness” instead of “mentally ill” 1. Botticelli MP, Koh HK. JAMA. 2016;316(13):1361-1362; 2. United States Interagency Council on Homelessness. Accessed June 5, 2023. https://www.usich.gov/news/peopleexperience-homelessness-they-arent-defined-by-it/; 3. Goddu AP, et al. J Gen Intern Med. 2018;33(5):685-691; 4. National Institute on Drug Abuse. Accessed June 5, 2023. https://nida.nih.gov/nidamed-medical-health-professionals/health-professions-education/words-matter-terms-to-use-avoid-when-talking-about-addiction#; 5. CDC. Accessed June 5, 2023. https://www.cdc.gov/healthcommunication/Preferred_Terms.html.
SAMHSA’s Definition of TIC 3 E’s of Trauma
6 Key Principles of TIC
• Individual trauma results from an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or lifethreatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being
• Safety (physical and psychological) • Trustworthiness and transparency – Goal is to build and maintain trust with clients • Peer support (from individuals with lived experiences of trauma) • Collaboration and mutuality – Understand partnering and recognizing level of power differences • Empowerment, voice, and choice • Cultural, historical, and gender issues
Trauma-informed care is a conceptual framework that considers a patient’s previous experiences with trauma and informs providers’ interactions with patients. TIC, trauma-informed care. SAMHSA. SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. HHS Publication No. (SMA) 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014.
Benefits of TIC in HIV • Can prevent staff burnout by encouraging self-care and providing ongoing training and peer support1
• Reduces mental health comorbidities2 • Improves provider-patient relationship3 • Improves ART adherence4 • Increases retention in care5
12 10
Patients, %
• Reduces substance use and other high-risk behaviors2
TIC Reduces Patients LTFU5
8 6 4 2
Gap in HIV medical visits In care visit gap
0 2017
2018
2019
2020 (March)
1. Sales JM, et al. SAGE Open Med. 2019;7:2050312119871417; 2. Brown MJ, Adeagbo O. Curr HIV/AIDS Rep. 2022;19(3):177-183; 3. SAMHSA. SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. HHS Publication No. (SMA) 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration, 2014; 5. Cunningham V. National Ryan White Conference on HIV Care & Treatment. Virtual conference; August 11-14, 2020.
Individual Strategies to Incorporate TIC Principle
Approach
Physical and emotional safety
• Be consistent and predictable • Ensure privacy and confidentiality • Provide expectations about what happens and why
Collaboration and mutuality
• Form a relationship with the patient to encourage healing • Shared decision making • Involve everyone in the clinic or organization in a TIC approach
Trustworthiness and transparency
• Clear roles • Informed consent and grievance process • Build and maintain trust among staff, patients, and families
Empowerment, voice, and choice
• Understand the patient’s coping mechanisms • Increase individual control and autonomy • Frame experiences as survivorship, not victimization
Peer support Cultural, historical, and gender issues
• Recognize utility of peer support and mutual self-help in building trust, collaboration, and safety • Provide gender-affirming care • Recognize and address historical trauma • Actively move past cultural stereotypes and biases
Shift the question from “What’s wrong with you?” to “What happened to you?” NASTAD. Accessed June 5, 2023. https://targethiv.org/sites/default/files/file-upload/resources/NASTAD-TraumaToolkit_01242019.pdf.
Selected Organizational Strategies to Implement TIC • Maintain commitment and momentum toward TIC
• Conduct evaluations as changes are being implemented
• Identify process for prioritizing opportunities that works for the clinic
• Conduct a trauma-informed assessment to identify opportunities and measure practices
Celebrate & Maintain
Implement & Monitor
Prioritize & Create a Work Plan
Gather Information & Identify Opportunities
Recognition & Awareness
Foundational Knowledge
Agency Readiness
Process & Infrastructure
• Recognize potential impact of trauma on retention in care
• Train all staff to have a fundamental knowledge of TIC
• Ensure staff are mentally and physically ready to incorporate TIC
• Policy and practice must support TIC at all levels
NASTAD. Accessed June 5, 2023. https://targethiv.org/sites/default/files/file-upload/resources/NASTAD-TraumaToolkit_01242019.pdf.
TIC Training Programs TIC Training Center
https://traumainformedcaretraining.com/
https://purplehealthfoundation.org/educationtraining/resources/traumainformedcare.html
https://www.traumainformedcare.chcs.org/invest-in-atrauma-informed-workforce/
Check your local resources or state-run websites for additional programs!
Conclusions • Patients can become LTFU for a variety of reasons, and it is important to identify these patients • Identification can occur through EMR searches or collaboration with external resources or organizations, and patient status must be verified • Addressing patients’ needs beyond HIV can encourage re-engagement and retention in care • Each clinic can tailor their process according to their staffing capacity • Adolescents will benefit from communication via text or social media, peer navigators, and increased reminders • Women with HIV will benefit from collocated care, particularly with OB/GYNs, and assistance with childcare to attend appointments • PWH and SUD can increase re-engagement in care with the use of external organizations, such as SSPs or MOUD clinics • Patients with mental health comorbidities often fall out of care and would benefit from collocated HIV and mental health care • PEH have multiple competing priorities that must be addressed and would benefit from a case manager or peer navigator • There are multiple individual- and organization-level strategies to implement TIC