1. Reflections on Retention or The World of Connectivity in HIV Ambulatory Care Bruce D. Agins, MD MPH Medical Director, NYSDOH AIDS Institute

2. Overview of the Talk Defining Retention Rationale for Focusing on Retention Measurement QI Strategies The Next Frontier: Revisiting Taxonomy

3. Defining Retention The act of keeping or holding in one’s possession To keep in a particular place, condition or position

4. Why is Retention Important? Medical care: –The heart of the patient-doctor relationship: The patient identifies the doctor (clinic) as his or her provider The doctor identifies the individual as his or her 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? Revenue –If patient’s keep coming to clinic, more bills can be generated in the fee-for- service system.

7. Why is Retention Important? Healthcare Costs –If patients are retained in care, they are more likely to receive preventive care, use emergency services less and keep overall healthcare costs lower.

8. 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.

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. 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 Brasil.

11. 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

12. Measurement What is the extent of the problem? –No-shows –Retention rates –Sources of data –Unmet need But, why??

13. 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 and open access?

14. 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

15. Retention Rates Examples: # of unique clients with at least 1 visit in past 4 months # 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) # pts with 2+ visits during the defined 12-month period # pts in the clinic registry during the defined period # pts with no visit during the past 4 months # pts with at least 1 visit during past 12 mos

16. Current NYS Retention Measure Number of unique clients with at least 2 or more visits during the past 12 months, one in each 6-month period Number of unique clients with at least 1 visit during the past 12 months

17. 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

18. Unmet Need During a 12-month interval, the number of patients who have had either a viral load or CD4 count measured or who have been prescribed antiretroviral therapy

19. Why Don’t Patients Come? Which patients are more likely to miss their appointments*: –Patients from minority communities, especially African-Americans –Younger age –Heterosexual –Education level lower than high school –Lack of health insurance –Lower income –Higher CD4 count –No AIDS diagnosis –History of IDU or current IDU –Lower perceived social support –Shorter follow-up since baseline –Less engagement with health care provider *Numerous studies; bibliography available upon request

20. Why Don’t Patients Come? HIV Literature: –Norris abstract 1990: conflict with work, no child care, no transportation, family illness –Palacio J Acquir Immune Defic Syndr 1999: among women: forgetting, conflicts, too sick. Non-HIV Literature: –Multiple sources: forgetting, feeling too ill, symptom resolution. –Lacy, Ann Fam Med 2004: negative emotions about seeing doctor; perceived disrespect of beliefs and time; distrust; lack of understanding about the scheduling system. Patient Satisfaction Surveys

21. 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

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. 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)

24. 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

25. 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.

26. 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

27. 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

28. Focused Case Management Strategies: Internal (facility) and External (community) Assess new patients for adherence barriers and make early, proactive referrals to services Community liaison workers utilized to re-engage patients lost to care

29. Improvement Processes “One of the best strategies leading to success has been strong clinical and administrative leadership in the retention initiative.”

30. 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

31. Setting Policy When can we stop making calls? How much effort should we make to physically locate patients, especially when contact information is incorrect? What are the legal responsibilities involved? Should certain patients be sought more aggressively than others?

32. 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?

33. 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.

34. 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 Infreque nt User Fully Engaged in HIV Primary Medical Care Not in Care Fully Engaged

35. A New Taxonomy Retention Engagement? -the act of obtaining and holding the attention of; engrossing -the act of pleasing or attracting; winning -the act of entangling, involving

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

37. Connecting to Care: 17 Strategies Adherence and self-management Inter-agency networking Support retreat: peer to peer education Teen peer outreach: peer education Primary care liaison Zip code mapping: targeting activities Snapshot viral load testing Deployed case management Heartline hotline Aftercare plan Support groups Early intervention nurse Woman to woman support Financial advocacy Clinicians reaching out Intake housing coordinator- –Linkage to care HIV care coordinator

38. Continuity of Care The state or quality of being unceasing, extending or prolonged without interruption [American Heritage Dictionary] An uninterrupted succession, unbroken course The extent to which services are coordinated an uninterrupted succession of events concordant with the patient’s clinical requirements. [Roos 1980; Shortell 1975] Both the provider and patient expect an enduring relationship. [Carmichael 1976]

39. Continuity of Care “Continuity of care may be provided by the same provider, the same care team or practitioners within the same group, or providers linked by referral.” »Adapted from Hidalgo: “Measuring Continuity of Care in HIV Special Needs Plans”. NYSDOH AIDS Institute. 1998.

40. What can we do now? Develop common measure Identify proven strategies Focus efforts on those not fully engaged or not retained Learn from our colleagues Use data sets to identify where patients are receiving care Encourage government and payors to use data to engage and retain patients and develop effective program models

41. Current Retention Activities In New York State  Focus of improvement projects for several Quality Learning Networks, including HHC and substance use providers  NYS Quality of Care Advisory Committee retention workgroup - addressing retention statewide  Internal AIDS Institute Continuity of Care workgroup  Ongoing review of journals and other publications

42. Acknowledgments Elizabeth Horstmann The HHC HIV Quality Learning Network