1. Reflections on Retention: Connecting to Care Reflections on Retention: Connecting to Care Bruce D. Agins, MD MPH Medical Director, New York State Department of Health AIDS Institute East Bay HIV Update Oakland June 12, 2009

2. Overview of the Talk Defining retention Rationale for focusing on retention Reviewing the literature Measurement Evidence base for strategies Quality improvement and retention Strategies and Conclusions

3. 3 Continuum Engagement in Care Unaware of HIV Status (not tested or never received results) Know HIV Status (not referred to care; didn ’ t keep referral) May Be Receiving Other Medical Care But Not HIV Care Entered HIV Primary Medical Care But Dropped Out (lost to follow-up) In and Out of HIV Care or Infrequent User Fully Engaged in HIV Primary Medical Care Not in Care Fully Engaged Non-engager Sporadic User Fully Engaged Health Resources Service Administration (HRSA)

4. Why is Retention Important? Health care: –The heart of the patient-provider relationship: The patient identifies the provider team (clinic) as his or her provider The team identifies the individual as their patient

5. Why is Retention Important? The Primary Care Model –Access –Coordination –Continuity –Comprehensiveness –Quality Perfectly suited to system-level interventions and quality improvement

6. 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.

7. Why is Retention Important? Public Health –Keeping patients retained in healthcare achieves the overall goal of keeping the population healthy, increasing the likelihood of preventing chronic disease and reducing morbidity and premature mortality.

8. 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. Is there evidence to support the hypothesis?

9. 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 Brasil.

10. Why is Retention Important for People Living with HIV? The Evidence Base: –We still don’t know which comes first: Viral load elevation or The missed appointment

11. Measurement What is the extent of the problem? –No-shows –Retention rates But, why??

12. No-Show Rates: aka “DNKA” No-show rates range from 25% to >40% in published studies Limitations: –Patients may be counted for multiple visits –Type of clinic visit not uniform –Time frame accepted for prior cancellation –Rescheduling: does it count? –What about walk-ins?

13. Retention Rates Require precise definitions of expected number of visits during a specified time interval Eligible population required for the denominator which requires determination of visit type and determination of active caseload of the clinic

14. Retention Rates Examples: # of unique clients with at least 1 visit in each half of the year # of unique clients with at least one visit in past 12 months # pts with at least 1 visit during 3 month interval after 12 month period # pts with 3 or more visits in the 12 mo. period (*1 in last 6 months)

15. Data Sources In the Clinic –Administrative databases in clinic –Medical record review required to ascertain reasons for not keeping appointments – may include case management notes –Is the universe captured in the database?

16. Reviewing the Literature

17. Who misses appointments? Clinical –Higher CD4 count (Catz, 1999; McClure, 1999; Arici, 2002) –Not having an AIDS diagnosis (Israelski, 2001; Arici, 2002) –Detectable viral load and AIDS-defining CD4 count (Berg, 2005) Other –History of or current IDU (McClure, 1999; Arici, 2002; Kissinger, 1995; Lucas, 1999) –Lower perceived social support (Catz, 1999) –Less engagement with health care provider (Bakken, 2000) –Shorter follow-up since baseline (Arici, 2002)

18. Why do HIV patients not come? Patients at a community based clinic: conflicts with work schedules, lack of child care, no transportation, family illness and hospitalization (Norris, 1990) Women patients: forgetting the appointment, having a conflicting appointment and feeling too sick to attend the visit (Palacio, 1999) NYC clinic: no specific explanation, forgot, meant to cancel, unexpected social reasons (Quinones, 2004)

19. Why do patients not come? Not HIV disease-specific studies –Forgetting the appointment –Feeling too ill to attend –Resolution of symptoms (Cashman, 2004; Moore, 2001; Waller, 2000; Barron, 1980) –Negative emotions about seeing doctor; perceived disrespect of beliefs and time; distrust; lack of understanding about the scheduling system. (Lacy, Ann Fam Med 2004)

20. Why Don’t Patients Come? One-Visit Study – Queens Hospital Center* –Exclude those who moved, transferred or died –15 patients not “retained”: Unable to contact 7 Contacted 8: –2 reported active substance abuse, 1 returned to care –1 fear of recognition, referred to other HIV clinic –1 psychiatric history, attends multiple HIV clinics –1 looking for a job, returned to care –1 refused outpatient treatment despite extensive outreach efforts (frequent QHC hospitalizations) –2 feeling well, are early in HIV and refused frequent medical visits Jazila Mantis, MD, Jean Fleischman, MD, Kathleen Aratoon, NP, Maria Szczupak, RPh, Diana Jefferson, RN, Terri Davis, MSW, Maria Bucellato

21. Why is Retention Important for People Living with HIV? PopulationAppointmentsHealth Outcome 123 patients, primary care clinic, Baltimore (Rastegar, 2003) Not specified which appts. included Missed appts. associated with VL> 500 copies/mL 273 patients, large urban clinic in Baltimore (Lucas, 1999) Nursing, psychiatry, dermatology, neurology and gastroenterology Missed appts. associated with failure to suppress VL 195 patients, JHU outpatients center (Sethi, 2003) “Scheduled clinic visit”Missed appts. associated with viral rebound and clinically significant resistance 366 patients, HIV clinic in Cleveland (Valdez, 1999) “Clinic visit”Missing <2 appts. associated lower VL (<400 copies/mL)

22. Percentage of Visits that were Missed because the Client failed to keep scheduled appointment with provider or social worker (N=1500)< 25%> 25% Clinical Outcomes Using HAART78%64%* Viral Load suppressed (< 400 copies/ml) 65%31%* Change in CD4 from Baseline+68 cells/mm 3 -36 cells/mm 3 * Health Resource Utilization Hospital Admissions per year (mean) 2.2 days3.2 days* ED visits per year (mean)3.26.8* * All comparisons are significant with p <0.01 Johns Hopkins AIDS Service Data Base 1999-2004 Clinical Outcomes and Health Resource Utilization Stratified by Percentage of Missed Visits

23. Visits and Outcomes: Dose Response Relationship GIORDANO, ET AL 2007 Multicenter VA Cohort Study CID 44: 1493-99 CD4 Count*Viral Load** All Patients+92-1.29 4 quarters+100-1.47 3 quarters+72-0.9 2 quarters+20-0.46 1 quarter+48.5-0.22 *median cells/10 6 p<.001 **median log 10 copies/mL p<.001

24. Missed Visits and Mortality Mugavero, et. al. 2009 UAB. CID 48:248-56. 543 new patients followed who were alive 12 months after their first visit Visits during first 12 months of care analyzed from 1/00-12- 05 325 pts (60%) missed visit in first year 32/325 died whereas 10/218 died among those who did not miss a visit [mortality rate 2.3/100 person-years vs. 1.0 per 100 person-years; p=.02] No difference in mortality based on whether 1 or >1 visit missed Predictors of missed visits: younger/female/black/risk other than MSM/public insurance/substance use disorders

25. 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

26. HIV Transmission Risk Behaviors and Engagement in Care Metsch, et. al. ARTAS Study. CID 2008; 47: 577-84. 316 patients followed from 4 US cities in secondary analysis of ARTAS brief case management intervention study targeting patients newly enrolled in care Used ACASI to assess presence or absence of self-reported unprotected vaginal or anal intercourse with HIV-negative partner Analytic variable of visits was minimum of 3 visits in previous 6 months based on mean number of OPD visits in US (6) 80% follow-up rate at 6 and 12 months

27. HIV Transmission Risk Behaviors and Engagement in Care Metsch, et. al. ARTAS Study. CID 2008; 47: 577-84. Multivariate regression shows significant reduction in risky sexual behavior among those with >3 visits compared with those who had <3 visits –Reduction from 27% at baseline to 12% at 6 mos; 14% at 12 months Other predictors: age>30; use of crack cocaine; female sex; depression; residence in Miami Consideration: New patients involved who may have more frequent visits; safe sex fatigue not a factor

28. Evidence Base for Strategies to Connect Patients to Care

29. ARTAS Study: Linking to Care Gardner LI, Metsch LR, Anderson-Mahoney P, et al. Efficacy of a brief case management interervention to link recently diagnosed HIV-infected persons to care. AIDS 2005: 19:423-31. Prospective randomized design of up to 5 brief case management interventions in patients with only one provider visit over 90 days; n=173 More participants receiving had a a provider visit in each of 2 consecutive 6 month periods compared to controls (78% versus 60%) Across both groups, better care utilization associated with no crack cocaine use, older age (40 years), receipt of supportive services and a more recent diagnosis

30. Outreach Initiative: HRSA SPNS Multi-site Evaluation Goals: –To engage people in HIV care –Turn sporadic users of care into regular users –Promote retention in care Program models –Scripted behavioral interventions, accompanying clients to appointments, home-based services, health literacy & life skills training Evaluation –Quantitative and qualitative methodologies –Link to outcomes

31. Outreach Initiative: Major Findings (Cabral, et. al. 2007; AIDS Patient Care & STDs) Increased frequency of contact results in fewer gaps in care during first 12 months of follow-up –773 patients from 7 sites followed and interviewed –Purposive sampling; prospective nonrandomized with single arm –Contact by clinicians, peers, and paraprofessionals –Contact may occur in office, out of office, not face-to-face –Types of contacts: Appointment reminder/reschedule, Service coordination, Relationship building, Provide concrete services (food, transport), Counseling, Provide information about the program, provide HIV education, Accompany client to appointment, Refer to or make appointment for health care, other Patients with 9 contacts during first 3 months were about half as likely to have a substantial gap

32. Outreach Initiative: Major Findings 2 Factors Associated with Engagement Rumptz, et. al. 2007 AIDS Patient Care & STDs. 58% become fully engaged in care (2 visits in 6 months) at 12 month follow up interval Factors associated with engagement in care among those with change compared to those without: –Discontinuation of drug use (4x) –Decreased structural/practical barriers to care* (3x) –Decrease in unmet needs** (3x) –Stable belief barriers (2.5x) ** financial assistance, housing, benefits assistance, transportation, mental health care, food, and substance abuse treatment * Difficulty paying for care, getting appointment at a convenient time, making an appointment because of no telephone, getting someone to answer calls to make an appointment, locating care, and finding providers who speak the same language

33. Outreach Initiative Major Findings 3: System Navigators Bradford, et. al. 2007 AIDS Patient Care & STDs. Patient Navigators: –Care coordination model helps patients to Make better use of available resources Develop effective communication with providers Navigate complexities of multidisciplinary treatment –May accompany patients to appointments –Teach patients to address barriers to care –May be peers or paraprofessionals, other than staff

34. Outreach Initiative Major Findings 4: Provider Role Malinson, et al. 2007 AIDS Patient Care & STDs. Qualitative methodology – Grounded theory Facilitative behaviors: –Connecting: presence (sitting down), attentiveness –Validating: able to trust and confide –Partnering: collaborative planning “ Emotional intelligence” of provider results in role as facilitator or barrier Ability to communicate in language patient understands cited as key factor

35. Outreach Initiative: Qualitative Findings Rajabiun 2007: AIDS Patient Care & STDs Determinants of sporadic use: –level of acceptance of being diagnosed with HIV –ability to cope with substance use, mental illness, and stigma –health care provider relationships –presence of external support systems –ability to overcome practical barriers to care Outreach interventions helped connect participants to care by: –dispelling myths and improving knowledge about HIV –facilitating access to HIV care and treatment –providing support –reducing the barriers to care Program interventions to interrupt this cyclical process and foster sustained, regular HIV care: –conducting client-centered risk assessments to identify and reduce sources of instability and improve the quality of provider relationships; –implementing strategies that promote healthy practices; –creating a network of support services in the community; –supporting adherence through frequent follow-ups for medication and appointment keeping

36. Quality Improvement and Retention

37. Improving Retention QI is perfectly suited to improve retention in the clinic Improvement strategies –Clinic operation & information systems –Consumer involvement to identify barriers & solutions –Increasing staff & patient awareness –Focused case management (internal & external)

38. Clinic Operation and Information System Strategies Clinic Organization Ensure coverage for provider vacations and time-off to avoid canceling or re-scheduling appointments Establish patient database to track adherence with appointments Pre-Appointment Reminder cards with date/time/location of visit mailed to patients Reminder calls made 48 hrs prior to appointment to allow patient time to make arrangements, if needed Reminder calls to patients made by providers, case managers or other staff closely involved w/ patient's care Schedule labs to be done prior to visits to maximize time spent w/ provider

39. Clinic Operation and Information System Strategies After a Missed Appointment Follow-up calls no later than 24 hours after missed appointment During Clinic Visit Update patient contact information at EACH clinic visit Cross reference all sources of patient contact information to consolidate and update Schedule labs for the next visit Improve visit/cycle time

40. Consumer Involvement Convene focus group of established patients to provide feedback on retaining new patients Survey patients who have missed appointments to identify common reasons and barriers Routinely share results of patient satisfaction surveys w/ Consumer Advisory groups to elicit feedback Survey new patients immediately following initial visit for satisfaction w/ services Develop patient satisfaction surveys targeted to patient groups w/ different levels of experience - patients w/ less than 3 visits, patients w/ more than three clinic visits, etc.

41. Increasing Patient and Staff Awareness Conduct new patient orientation sessions and include discussion of staying in care Schedule one-to-one sessions for new patients unable to attend group orientations Develop written patient materials on the importance of staying in care Staff education - routinely discuss patient retention w/ all staff

42. Focused Case Management Strategies: Internal (facility) and External (community) Create “patient profile” sheet to summarize patient’s appointment history Medical records of patients who missed appointments given to providers at end of session-provider determines priority for follow-up Multidisciplinary case conferencing includes plans for retaining individual patients in care Develop categories of patients requiring more intensive follow-up and develop specific protocols for each group Refer patients w/ two consecutive broken appointments to case manager

43. Improvements: Current Status Patient Factors –May or may not be amenable to change –Supportive services may be beneficial –Outreach programs effective but expensive System Factors –Amenable to change –Do changes result in improvement? –QI methods well-suited to improving retention and testing strategies

44. The Role of the Clinic: Information Systems Can you capture all HIV patients in the facility? Can you track the right visits? Can you flag patients who don’t return? Do you know who is at risk for falling out of care in your population?

45. The Role of the Clinic: Consumer Involvement What reasons do your patients give for not coming to clinic? Why do they want to come to clinic? Do you have a community advisory board? Is it involved in designing your retention work? Reviewing the data? Do your patients understand why it is important to come for the visit?

46. The Role of the Clinic: Case Management What systems do you have for addressing retention in your clinic? Are the staff involved? Are unretained patients flagged for team discussions? Do you need a reminder system? Do you have updated contact information for your patients?

47. The Role of the Clinic: Case Management (2) Do staff try to locate patients who don’t come? Can you work with external agencies to locate patients?

48. Looking Beyond the Clinic Patients may seek care from multiple providers in different locations. Is a patient who receives care from another provider “retained”? How should we define quality of care in the context of retention when a patient receives care outside of the clinic?

49. The Role of Government Measuring retention in the community Comparing rates Determining reliable data sources Identifying best practices - based on what can be proven to work Supporting programs to re-engage patients and return them to care Developing a data system to locate patients

50. Moving Forward

51. General Concepts Data sources are usually imperfect: Improving them is a top priority Retention rates range from 70-85% in HIV clinics: Who is not retained? Limited data about “at-risk” patients

52. 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 and retention and decrease sporadic use: fortify relationships

53. 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

54. What can we do now? Use a common measure Identify proven strategies: Measure! Focus efforts on those not fully engaged or not retained Learn from patients Learn from each other

55. What can we do now? Link retention data to health outcomes Work with community partners to address patient needs Develop networks and data systems to locate patients and identify effective local program models

56. Act Locally Retention activities and improvements are unique to the context of each organization and its patient population and its community

57. A New Taxonomy Connection –the act of joining; union –an association, alliance, or relation –anything that joins, relates, or connects; a bond; a link

58. Conclusions Retention in care is associated with improved health outcomes Practical strategies can improve retention rates involving healthcare providers and NGOs Addressing patient needs and barriers to care improves retention Measurement is key to investigating the problem and identifying effective solutions Some improvement will occur through clinic-based improvements but long-term results will likely require community-level action and coordination

59. Acknowledgments Johanna Buck Elizabeth Horstmann Fareesa Islam Jillian Brown The HHC HIV QI Learning Network