D eveloping training on retention in care

1. Debbie Konkle-Parker, PhD, FNP June 2012 Developing training on retention in care

2. Objectives • Desired content • Methods to teach on the subject: case-based; worksheet, best practices discussion, panels, brainstorming • Others?

3. What makes it difficult to prepare a training on retention in care?

4. Important Content for training • General background: why should I care? • Describe the extent of the problem of retention in HIV care and its effect on health outcomes • Specific background: what has research told us about the problem? • Describe the factors that have been found to be associated with retention in HIV care • What can we do about it anyway? • Describe evidence-based strategies to impact retention in HIV care • How can we make this real? • Discuss potential strategies in clinical settings

5. General background: why should I care?

7. Why is Retention Important? Patient Care and Public Health Retention has now been proven to correlate with improved biological outcomes that improve quality of life for patients [and reduce the likelihood of further transmission of HIV to others] National Quality Center

8. Why is Retention Important? Healthcare Cost If patients are retained in care, they are more likely to receive preventive care, use emergency services less and keep overall healthcare utilization and costs lower, placing less demand on human and material resources. National Quality Center

9. Why is Retention Important for People Living with HIV? • Hypothesis: • Retention in care promotes improved adherence to treatment which results in lower viral loads, prevention of drug-resistance and improved health outcomes, as well as decreased HIV transmission. • Is there evidence to support the hypothesis?

10. Why is Retention Important for People Living with HIV? • The Evidence Base: • Rastegar, AIDS Care 2003: Missed appointments associated with detectable viral load. Chart review 1997-99. • Lucas, Ann Intern Med 1999: Missed appointments associated with failure of suppression. JHU. 1996-8. • Valdez, Arch Intern Med 1999: Missing <2 appts per year associated with virologic success defined as <400 copies. • Sethi, Clin Infect Dis 2003:Missed appointments associated with viral rebound and clinically significant resistance at JHU 2000-1. • Nemes, AIDS 2004: Missing 2 appointments associated with decreased adherence among >1900 patients in Brazil. National Quality Center

11. Why is Retention Important for People Living with HIV? • The Evidence Base: • Giordano, CID, 2007: Less frequent visits associated with mortality in US veterans starting HIV medicines, even in a system financial barriers are low. • Mugavero, CID, 2009: In a community setting in Birmingham, AL, missed visits within the first year of entering treatment was associated with mortality • Park, Journal of Internal Medicine, 2007: In South Korea, even one missed visit in the first year after starting HAART was associated with increased mortality, and this doubled with each missed visit • Mugavero, JAIDS, 2009: The racial disparity in virologic failure lost significance when adjusted for missed visits.

12. Why is Retention Important for People Living with HIV? • 1 in 5 do not know their HIV status • 2 in 5 have not seen an HIV primary care doctor • 3 in 5 don’t regularly see their doctor, and • 5 in 5 are not viral load suppressed Gardner et al, CID 2011

14. Why is Retention Important for People Living with HIV? • In a meta-analysis of more than 53,000 people diagnosed with HIV between 1995 – 2009: • 69% entered care within 4 – 6 months and had subsequent > 2 visits • Of those, on average, 59% had multiple HIV medical care visits across different periods of time Marks, Gardner, Craw, & Crepaz, 2010

15. Specific background: what has research told us about the problem?

16. Structural and Personal Issues • “Multiple studies have shown that patients who access case management, transportation, mental health support, drug treatment, and other supportive services are more likely to be retained in care than are those who do not. • “Interventions that assist patients to develop and maintain a positive relationship with health care providers and to improve their knowledge of HIV infection and dispel negative health beliefs also improve outcomes.” Cheever, L.W. (2007). Engaging HIV-infected patients in care: their lives depend on it. Clinical Infectious Diseases, 44.

17. Factors Associated with Retention Demographics: • Mugavero, JAIDS 2009, CID, 2007, CID 2009 : higher median Missed Visit Proportion (MVP) seen in younger patients, females, blacks, those with no or public health insurance, those with substance abuse histories; • Giordano, CID 2007: those with better retention in care had more advanced disease, were older, less substance abuse, were more adherent to prescriptions. • Gardner, AIDS 2005: more health care utilization associated with no crack use, older age, use of assistance programs, recent diagnosis, case management

18. Factors Associated with Retention • Rajabiun, AIDS Pt Care and STDs, 2007: engagement in care was associated with • level of acceptance of disease; • ability to cope with mental illness, substance abuse, and stigma; • health care provider relationships; • presence of support system; and • ability to overcome practical obstacles to care.

19. Factors Associated with Retention • Tobias, AIDS Pt Care and STDs 2007: predictive factors for less retention included • substance abuse, • number of unmet needs, • negative health belief, • no insurance. • Predictive factors of more care included • having a case manager, • having less mental health problems, and • use of mental health services.

20. Provider-Patient Relationship • Barrier: • Patronizing communication by provider • Facilitators: • Connecting, by giving time and attention • Validating, by treating the patient as an individual person • Partnering, by listening to and acknowledging patient needs Mallinson, Rajubian, & Coleman (2007). The provider role in client engagement in HIV care. AIDS Pt Care & STDs

21. Barriers and Facilitators of Engagement in HIV Care at UMMC

22. What can we do about it anyway?

23. Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R et al, epubahead of print 3/5/2012 in Annals.org Guidelines for Improving Entry Into and Retention in Care and ART Adherence: Evidence-Based Recommendations from an International Association of Physicians in AIDS Care Panel

24. Grading Scales for Quality of the Body of Evidence and Strength of Recommendations. Thompson M A et al. Ann Intern Med doi:10.1059/0003-4819-156-11-201206050-00419 ©2012 by American College of Physicians

25. 1. Systematic monitoring of successful entry into HIV care (IIA) • Collaboration with HIV testing sites • Creation of process map regarding entry into care, to identify where loss is happening and to focus intervention

26. 2. Systematic monitoring of retention in HIV care (IIA) • In+Care campaign • Clinic-based monitoring of performance measures • Creation of electronic signal when individual out of care for six months, for initiation of outreach

27. 3. Brief, strengths-based case management for individuals with a new HIV diagnosis (IIB) • Based on data from AntiRetroviralTreatment and Access Study (ARTAS) trial

28. Antiretroviral Treatment Access Study (ARTAS) • Brief case management protocol allowed up to 5 contacts: 3 for development of relationship, identifying client needs and barriers to health care, and encouraging contact with the clinic. • 2 other contacts allowed if needed, including accompaniment to clinic. Garner, Metsch, Anderson-Mahoney et al (2005) Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care. AIDS, 19(4):423-431.

29. Trained social workers helped clients to identify their internal strengths and assets to facilitate successful linkage to HIV medical care

30. ARTAS Results • Results showed significantly greater proportion of case managed individuals saw an HIV care provider at least once by 6 and 12 months (RR=1.41, p=.006) • Those with 2 or more contacts showed a significant difference from SOC • Average of 2.6 face-to-face contacts with clients. Estimated cost $600-1200 per client.

31. 4. Intensive outreach for individuals not engaged in medical care within 6 months of a new HIV diagnosis (IIC)

32. Outreach Initiative • HRSA Special project of National Significance (SPNS) in 10 US sites 2004-2006 to demonstrate and evaluate the effectiveness of outreach initiatives in engaging and retaining underserved disadvantaged individuals in HIV care Bradford, J. B. (2007). The promise of outreach for engaging and retaining out-of-care persons in HIV medical care. AIDS Patient Care and STDs, 21(Suppl1):S85-81. Cabral, H.J., Tobias, C., Rajabiun, S., Sohler, N., Cunningham, C., Wong, M., et al. (2007). Outreach program contacts: do they increase the likelihood of engagement and retention in HIV primary care for hard-to-reach patients? AIDS Patient Care and STDs, 21(Suppl1):59-67.

33. Findings from Outreach Initiative • Individuals with 9 or more contacts within the first 3 months of entering care were significantly less likely to experience a gap in care, especially when the program included accompaniment to visits.

34. 5 Use of peer or paraprofessional patient navigators (IIC)

35. Findings from Outreach Initiative • Navigation programs that include skills-building with clients to build skills/ confidence to develop a partnership with providers significantly improved engagement scores and retention in care

36. Multidimensional HIV Treatment Adherence Intervention in MS • Two face-to-face sessions for • I: HIV education • M (personal): motivational interviewing • M (social): video of peers to improve social motivation • BS: adherence reminder devices • BS: training on how to improve communication with the provider during a medical visit Konkle-Parker, D., Amico, K. R., & McKinney, V. (2012). Effects of a Multidimensional Intervention on Retention in HIV Care in the Deep South. Manuscript in preparation.

37. How can we make this real?

38. Major Lessons • Barriers to care can be reduced or removed with sufficient resources • Coaching, skills-building, knowledge gains, and respectful, trusting relationships with outreach workers can facilitate better utilization of HIV care

39. Major Lessons • For the most disadvantaged individuals, more resources and systemic changes are needed to provide equitable access to HIV care Bradford, J. B. (2007). The promise of outreach for engaging and retaining out-of-care persons in HIV medical care. AIDS Patient Care and STDs, 21(Suppl-1):S85-81. Bradford, J. B., Coleman S., Cunningham, W. (2007). HIV System Navigation: An emerging system to improve HIV care access. AIDS Patient Care and STDs, 21(Suppl-1):S49-58.

40. Practical Strategies • Partnerships with community-based agencies offer great potential • Supportive services, including navigation and case management, help increase retention by removing barriers and meeting needs • Provider engagement and behavior affects levels of engagement and retention and decrease sporadic use: fortify relationships HIV Quality Center

41. Practical Strategies (2) • Use peers • Target new patients • Help patients access needed services to remove barriers to care: transportation, mental health support, drug treatment • Reduce drug use • Dispel negative health beliefs HIV Quality Center

42. Other ideas from the literature • Co-locating of HIV services • Medical • Case management • Psychiatric services • Substance use services • Homelessness services • Human services addressed at poverty • If impossible, patient navigators can help

43. Reminder Systems • Phone calls • Text messages • Letters

44. Addressing Patient Characteristics • younger age, • substance abusers, • women, • those with mental health problems, • women, • those with no insurance, • older diagnoses, • earlier disease What else?

45. Focusing on special populations • The population of focus might be different in different clinics

46. Building on Infrastructure • Making it a clinic-wide program • Roles and responsibilities for all clinic staff • Reinforcement of attendance • Reminder calls • Updating of contact information • Questionnaires to identify important issues • Data review to identify the target audience Other roles?

47. Brainstorm; panels of representatives from different clinics who have worked on this issue; strategizing

48. PLAN • Measure retention prior to intervention • number of missed visits, • missed visit proportion (MVP), • number of intervals with at least one visit (persistence), or • interval with no arrived visits (gap in care) • Identify problem/target group for an intervention

49. DO • Develop targeted intervention to address the problem identified and try it for a small group or short period of time

50. STUDY • Evaluate the results of small pilot study