Welcome HIV QI Network!

1. Welcome HIV QI Network! Evidence Based Adherence Support Interventions Webinar: Evidence, Resources, and Dialogue July 16th 2012 STOP HIV/AIDS QI Network

2. HIV Case Management Adherence Support Interventions Webinar July 16, 2012 Mary Petty, PHC HIV Program

3. HIV case management community level model deployed early in the AIDS epidemic crisis focused support for clients facing terminal illness move to coordinate HIV case management services as epidemic evolved (funding structures) concerns re: barriers to medical care & treatment managing mental health issues, addictions, basic needs addressing fragmented social and medical services—complicated delivery system

4. Current issues in HIV case management Access and retention in care – ART adherence Patient perception of “case management” Confusion – multiple “case managers” types of CM – e.g. “intensive” “strengths-based” “outreach” “clinical” Limited evidence – see recent “Guidelines”

5. HIV case management in primary medical care focus on clinical services of HIV primary care (“medical case management”) coordination of inpatient and outpatient care referrals to specialists follow-up for referrals and missed appointments – reminder calls, etc. conferencing between clinical and community-based case managers goal - to help clients gain and maintain access to primary medical care and treatment formal & professional service linking clients/patients to a continuum of health and social service systems

6. John Ruedy Immunodeficiency Clinic - St. Paul’s Hospital (IDC) outpatient HIV primary care based on hospital site interprofessional team – physicians, nurses, social workers, pharmacists, nutritionist, addictions counselor, mental health team (psychiatrist, psychologist, mental health nurse, social workers), + specialists physicians and peer navigators low barrier care

7. IDC patients… (June 2012) 1,073 active patients patients with primary care visit in past 4 months = 82% patients with pVL test in past 4 months = 92% currently on ART & have had CD4 count < or = 200 = 96% on ART for 6 months or more with pVL < 200 = 93%

8. IDC Case Management model Current model initiated APRIL 2011 – also Peer Navigation Program and VCH STOP Outreach team Goals improve health and quality of life for patients with complex medical & psychosocial issues promote clinic engagement promote adherence to ARVs prevention of transmission delay HIV progression patient education and self management utilize team more effectively

9. IDC CM Model… Interdisciplinary medical care coordination social work case management Important principles confidentiality and self-determination early access to and ongoing engagement in HIV primary care improved integration of medical and social services continuity of care

10. IDC CM Model… Identifying patients who need case management: referrals by any team member new patients assessed at intake existing patients poorly engaged in care medically complex patients psychosocially complex frequent use of ER

11. IDC CM Model… CM referral & review team – lead case managers + CNL + physician lead meets bi-weekly new referrals reviewed by CM team bi-weekly coordination and data management – CM lead nurse assigned (lead) case manager (nurse or social worker) preliminary plan and review date set ongoing cases reviewed (by date or need) monitoring. evaluation and quality improvement

12. IDC CM activities/strategies… ongoing work and tasks – carried out by small team—lead case manager + physician + other team member(s) assessment of needs/goals developing (refining) & implementing plan supportive counseling and relationship building advocacy, crisis intervention ongoing coordination (medical, community services, etc.) support ongoing primary care and treatment adherence monitoring & evaluation (with larger CM team)

13. IDC CM activities/strategies… collaboration with IDC peer navigators STOP Outreach team other community services engagement outreach—home visits, support patient education and self management skills

14. IDC CM… (April 2012) patients in case management N = 87 Reasons for referral (multiple reasons possible) poor engagement N = 59 medically complex N = 22 psychosocially complex N = 54 frequent ER visits N = 3

15. IDC CM… April 2012 – one year review patients re-engaged in care N = 31 improved engagement in care = 14 decreased HIV VL = 20 undetectable VL = 10 increased VL = 5 engaged in care, not on ART = 5

16. IDC CM… April 2012 – one year review Staff Satisfaction Response rate 60% Rated process as excellent or very good 86% + improvements noted in care co-ordination and communication - time consuming, needs greater participation from primary care physicians

17. QUESTIONS?

18. APPENDIX

19. AIDS Institute Standards for HIV/AIDS Case Management (2006) New York State Department of Health http://www.health.ny.gov/diseases/aids/standards/casemanagement/

20. Thompson, M.A. et al. Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons With HIV: Evidence-Based Recommendations From an International Association of Physicians in AIDS Care Panel. Annals of Internal Medicine. 5 June 2012;156(11):817-833

21. Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons With HIV Recommendation 3: Brief, strengths-based case management for individuals with a new HIV diagnosis is recommended (II B). Gardner  LI,   Metsch  LR,   Anderson-Mahoney  P,   Loughlin  AM,   del Rio  C,   Strathdee  S.  et al., Antiretroviral Treatment and Access Study Study Group,  Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care.. AIDS. 2005;19423-31PubMed The Antiretroviral Treatment and Access Study evaluated entry into and retention in care as part of a multisite RCT in several U.S. care sites comparing strengths-based case management sessions (up to 5 in a 90-day period) with passive referrals for local care among patients with recently diagnosed HIV infection. Trained social workers helped clients to identify their internal strengths and assets to facilitate successful linkage to HIV medical care. A significantly higher proportion of the case-managed participants visited an HIV clinician at least once within 6 months (78% vs. 60%) and at least twice within 12 months (64% vs. 49%). However, availability of resources may impede implementation in a given jurisdiction or service area.

22. Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons With HIV Recommendation 4: Intensive outreach for individuals not engaged in medical care within 6 months of a new HIV diagnosis may be considered (III C). Naar-King  S,   Bradford  J,   Coleman  S,   Green-Jones  M,   Cabral  H,   Tobias  C.   Retention in care of persons newly diagnosed with HIV: outcomes of the Outreach Initiative.. AIDS Patient Care STDS. 2007;21Suppl 1S40-8PubMed In a sample of 104 individuals in whom HIV was diagnosed within 6 months before enrolling in the U.S. Special Projects of National Significance Outreach Initiative, 92% attended medical appointments within 6 months of enrollment. At study baseline, 14% of individuals had undetectable HIV-1 RNA, which increased to 45% after 12 months of follow-up. This observational demonstration project used a variety of approaches, focusing on individuals considered underserved by the health care system (such as women, youth, and people with a history of substance use or mental illness).

23. Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons With HIV Recommendation 5: Use of peer or paraprofessional patient navigators may be considered (III C). Bradford  JB,   Coleman  S,   Cunningham  W.   HIV System Navigation: an emerging model to improve HIV care access.. AIDS Patient Care STDS. 2007;21Suppl 1S49-58PubMed Patient navigation has been described as a model of care coordination and is largely based on peer-based programs established for patients with cancer. Patient navigators are trained to help HIV-infected patients facilitate interactions with health care. In an analysis of 4 patient-navigation interventions from the U.S. Special Projects of National Significance Outreach Initiative, involving more than 1100 patients who were inconsistently engaged in care, the proportion with at least 2 visits in the previous 6 months increased from 64% at baseline to 87% at 6 months and 79% at 12 months in the intervention group. In addition, the proportion of patients with undetectable HIV-1 RNA was 50% greater at 12 months than at baseline.

24. Guidelines for Improving Entry Into and Retention in Care and Antiretroviral Adherence for Persons With HIV Recommendation 32: Case management is recommended to mitigate multiple adherence barriers in the homeless (III B). Kushel  MB,   Colfax  G,   Ragland  K,   Heineman  A,   Palacio  H,   Bangsberg  DR.   Case management is associated with improved antiretroviral adherence and CD4+ cell counts in homeless and marginally housed individuals with HIV infection.. Clin Infect Dis. 2006;43234-42PubMed Case management includes referral to mental health and substance use treatment and housing (or housing vouchers), as appropriate, and can facilitate continuity when individuals are transitioning into and out of incarceration. However, referrals require the availability of infrastructure and resources, which differ dramatically among communities. One observational study in the United States showed that case management was associated with improved adherence and CD4 cell counts in a marginally housed population.

25. AIDS Committee of Toronto & CLEAR Unit, McMaster University (2005) Husbands, W. et al. 2005. A Case Management Approach to Support Services for People Living with HIV/AIDS (PHAs) Assessing the Effectiveness and Costs http://www.wellesleyinstitute.com/wp-content/uploads/2011/11/a-2003-09-125.pdf

26. Adherence Support Interventions:Evidence, Resources & Dialogue . . . as peers 16 July 2012 R. Paul Kerston (604) 646 - 5309 Program Coordinator:Treatment Outreach + Community Representation & Engagement

27. A G E N D A My background Some evidence / some issues Some resources Hopefully, some dialogue

28. R. Paul Kerston Adjunct Professor College of Health Disciplines, UBC Course # IHHS 402 “HIV: Prevention & Care” Instructor, Universities Without Walls (CIHR STIHR - funded through REACH) Patient Liaison, Response Team

29. Patient Liaison B A C K G R O U N D recipient of HIV services in BC experience advocating for other HIV Pts O F F E R I N G perspective on challenges & barriers Pts face in obtaining high - quality care to speak to groups of peers / providers

30. From: Primary Care Guidelines for the Management of HIV / AIDS in BC “Stigma, isolation and marginalization are common realities in the lives of HIV-positive individuals. Ensuring access to social and emotional support for affected individuals is a crucial part of HIV primary care.” 33 33Department of Health and Human Services. A guide to primary care for people with HIV / AIDS. 2004. Available from: http://www.hab.hrsa.gov/tools/primarycareguide/index.htm

31. Project Goals: Improve the patient experience in every step of the HIV / AIDS journey To implement our mission statement: “…place the journey of the patientat the core of all conversations.”[emphasis added] “Integrating the Patient Voice in improvement means putting the patient’s experience at the forefront, & bringing Pts into the decision - making process.” [emphasis added]

32. Systemic Barriers to Care Some first experiences w/ receiving an HIV Dx are negative Some health care providers lack awareness of CBO services Educated & trained “Peers as professionals” is new 32

33. Other Barriers to Accessing Care & Support Struggles with a shifting new identity Inability to see the long - term value of self - care (especially for youth) Lack of general self - management skills No knowledge of services 33

34. Our Newer Members / Clients(at Positive Living BC) Scared Depressed Shameful Guilty Sleep problems Difficulty remembering Afraid of antiretroviral (perceived as being as bad as HIV itself) Confused by the healthcare system What is my Doctor talking about? Language & blood work HIV organizations perceived as good for others, but not me Don’t want to be service dependant (Getting help = helpless) 34

35. Issues on their minds • (Many questions are hard for them to articulate) • Most common, in order of importance to them: • Mortality • Disease progression (body-image fears) • How to disclose to friends, family, sex partners… & the law • Safer sex (harm reduction) strategies • When should I start Tx • Side - effect management • Self - care strategies 35

36. MIPA: Meaningful Involvement of People with HIV / AIDS • Began in 1994 as GIPA, The Greater Involvement of People Living with HIV, evolved over time to MIPA. • At its basics, it means two important things: • To recognize the important contribution people living with HIV can make in the response to the epidemic, and • To create space within society • for our involvement and active participation in all aspects of • that response. 36

37. Some Local Solutions Resource Development Peer Navigators & Support Groups Patient Advisory Group

38. We needed to create self - management tools (at Positive Living BC) to… 1. Teach about HIV 2. Provide education on the value of ARV Therapy 3. Address emotional care 4. Encourage harm-reduction strategies 5. Promote self-care strategies 38

39. Take - Away Resources for Nurses & Social Workers Healthy Living Manual Pocket Guide First Steps Working w/ Doctor

40. For Specific Populations Aboriginal Persons Persons w/ IDU MSM Older People Women Co-infected Individuals

41. Easy-to-Read Materials CD4 & Viral Load Drug Adherence Newly Diagnosed Get Tested Women & HIV Getting Better Starting Drugs Working w/ Doctor

42. Peer Navigation Services * • Provide a safe, confidential space • Offer emotional support • Offer one-on-one discussions to educate & empower • Help the more newly-diagnosed assess their own individual care / support needs • Use inclusive language instead of medical terminology to • make topics easier to understand *Presently available only through funding via Vancouver Coastal Health Authority & Providence Health Care – in Vancouver only – but consultation possible via Response Team 42

43. Curricula for Members / Clients • The new realities of living with HIV as an episodic disability – dispelling myths & misconceptions • Preventing disease progression, self-care & self-management • strategies • Safer sex & other STIs– harm redux, transmission, sex & risk • assessment • Tx info– when to start Tx, meds options & how to manage side effects • Disclosure– strategies for meeting both the legal obligations & the • personal challenges of sharing one’s HIV status w/ others • Doctors - finding appropriate HIV care in their community, understanding blood work, & the importance of a relationship w/ their Dr 43

44. 1. Include us @ PoC / WB Dx or soon after2. Bring clients to our resource centre / office3. Bring us out of our office, into your clinic room, whenever appropriate4. Together explore creative uses for the wait room (a potential wellness education space)5. Promote us as a resource to clients6. Request & distribute resources How IDC & Peer Navigators Work Together 44

45. Creating Space Peers work with professionals in a number of settings: 45

46. Challenges Increasing meaningful involvement & participation in conventional medical setting Tackling the difficult clinical issues (pain management & addictions clinic) Tensions among patients who might participate “good patients” vs. “bad patients” Creating more open communication channels / less distance between team & patients

47. Patient Advisory Groupfor Providence Health’s HIV (IDC) Program Meets quarterly since 2008 Setting: Weekdays 5 pm - 7 pm in hospital Board room Representation from inter-professional team Ongoing effort to have diversity among participants

48. Getting the Group Going Getting “buy-in” From staff From patients From the community-at-large Setting the ‘group culture’

49. Something to Think About Do you have a Patient Advisory Group (PAG)? If yes: How long running, how often meeting, who attends If not: Why not? Who could be allies in establishing a PAG ?

50. A C K N O W L E D G E M E N T S Glen Bradford - slides Mary Petty - slides