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  1. 1. Engagement in Care: What Do We Know? <ul><li>Courtesy </li></ul><ul><li>Bruce Agins, MD MPH </li></ul><ul><li>bda01@ </li></ul>
  2. 2. Continuum Engagement in Care Not in Care Fully Engaged Non-engager Sporadic User Fully Engaged Health Resources Service Administration (HRSA) 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
  3. 3. Why Is Retention Important for People Living with HIV? Population Appointments Health Outcome 123 patients, primary care clinic, (Rastegar, 2003) Baltimore Not specified which appts. included Associated with VL> 500 copies/ml 273 patients, large urban clinic in Baltimore (Lucas, 1999) Nursing, psychiatry, dermatology, neurology and gastroenterology Associated with failure to suppress VL 195 patients, JHU outpatients center (Sethi, 2003) “ Scheduled clinic visit” 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)
  4. 4. Missed Visits and Mortality Mugavero, et. al. 2009 UAB. CID 48:248-56. <ul><li>543 new patients followed who were alive 12 months after their first visit </li></ul><ul><li>Visits during first 12 months of care analyzed from 1/00-12-05 </li></ul><ul><li>325 pts (60%) missed visit in first year </li></ul><ul><li>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] </li></ul><ul><li>No difference in mortality based on whether 1 or >1 visit missed </li></ul><ul><li>Predictors of missed visits: younger/female/black/risk other than MSM/public insurance/substance use disorders </li></ul>
  5. 5. Measurement <ul><li>What is the extent of the problem? </li></ul><ul><ul><li>No-shows </li></ul></ul><ul><ul><li>Retention rates </li></ul></ul><ul><li>But, why?? </li></ul>
  6. 6. No-Show Rates: aka “DNKA” <ul><li>No-show rates range from 25% to >40% in published studies </li></ul><ul><li>Limitations: </li></ul><ul><ul><li>Patients may be counted for multiple visits </li></ul></ul><ul><ul><li>Type of clinic visit not uniform </li></ul></ul><ul><ul><li>Time frame accepted for prior cancellation </li></ul></ul><ul><ul><li>Rescheduling: does it count? </li></ul></ul><ul><ul><li>What about walk-ins? </li></ul></ul>
  7. 7. Retention Rates <ul><li>Require precise definitions of expected number of visits during a specified time interval </li></ul><ul><li>Eligible population required for the denominator which requires determination of visit type and determination of active caseload of the clinic </li></ul>
  8. 8. Retention Rates <ul><li>Examples: </li></ul><ul><ul><li># of unique clients with at least 1 visit in past 4 months </li></ul></ul><ul><ul><li># of unique clients with at least one visit in past 12 months </li></ul></ul><ul><ul><li># pts with at least 1 visit during 3 month interval after 12 month period </li></ul></ul><ul><ul><li># pts with 3 or more visits in the 12 mo. period (* 1 in last 6 months) </li></ul></ul><ul><ul><li># pts with 2+ visits during the defined 12-month period </li></ul></ul><ul><ul><li># pts in the clinic registry during the defined period </li></ul></ul><ul><ul><li># pts with no visit during the past 4 months </li></ul></ul><ul><ul><li># pts with at least 1 visit during past 12 mos </li></ul></ul>
  9. 9. Who misses appointments? <ul><li>Clinical </li></ul><ul><ul><li>Higher CD4 count (Catz, 1999; McClure, 1999; Arici, 2002) </li></ul></ul><ul><ul><li>Not having an AIDS diagnosis (Israelski, 2001; Arici, 2002) </li></ul></ul><ul><ul><li>Detectable viral load and AIDS-defining CD4 count (Berg, 2005) </li></ul></ul><ul><li>Other </li></ul><ul><ul><li>History of or current IDU (McClure, 1999; Arici, 2002; Kissinger, 1995; Lucas, 1999) </li></ul></ul><ul><ul><li>Lower perceived social support (Catz, 1999) </li></ul></ul><ul><ul><li>Less engagement with health care provider (Bakken, 2000) </li></ul></ul><ul><ul><li>Shorter follow-up since baseline (Arici, 2002) </li></ul></ul>
  10. 10. Why Do HIV Patients Not Come to Clinic? <ul><li>Patients at a community based clinic: conflicts with work schedules, lack of child care, no transportation, family illness and hospitalization (Norris, 1990) </li></ul><ul><li>Women patients: forgetting the appointment, having a conflicting appointment and feeling too sick to attend the visit (Palacio, 1999) </li></ul><ul><li>NYC clinic: no specific explanation, forgot, meant to cancel, unexpected social reasons (Quinones, 2004) </li></ul>
  11. 11. Evidence Base for Strategies to Connect Patients to Care
  12. 12. ARTAS Study Gardner LI, Metsch LR, Anderson-Mahoney P, et al. Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care. AIDS 2005: 19:423-31. <ul><li>Prospective randomized design of up to 5 brief case management interventions in patients with only one provider visit; n=173 </li></ul><ul><li>More participants receiving CM intervention had a provider visit in each of 2 consecutive 6 month periods compared to controls (78% versus 60%) </li></ul><ul><li>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 </li></ul>
  13. 13. Outreach Initiative: HRSA SPNS Multi-site Evaluation <ul><li>Goals: </li></ul><ul><ul><li>To engage people in HIV care </li></ul></ul><ul><ul><li>Turn sporadic users of care into regular users </li></ul></ul><ul><ul><li>Promote retention in care </li></ul></ul><ul><li>Program models </li></ul><ul><ul><li>Scripted behavioral interventions, accompanying clients to appointments, home-based services, health literacy & life skills training </li></ul></ul><ul><li>Evaluation </li></ul><ul><ul><li>Quantitative and qualitative methodologies </li></ul></ul><ul><ul><li>Link to outcomes </li></ul></ul>
  14. 14. Outreach Initiative: Major Findings (Cabral, et. al. 2007; AIDS Patient Care & STDs) <ul><li>Increased frequency of contact results in fewer gaps in care during first 12 months of follow-up </li></ul><ul><li>773 patients from 7 sites followed and interviewed </li></ul><ul><li>Purposive sampling; prospective nonrandomized with single arm </li></ul><ul><li>Contact by clinicians, peers, and paraprofessionals </li></ul><ul><li>Contact may occur in office, out of office, not face-to-face </li></ul><ul><ul><li>Types of contacts: </li></ul></ul><ul><ul><ul><li>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 </li></ul></ul></ul><ul><li>Patients with 9 contacts during first 3 months were about half as likely to have a substantial gap </li></ul>
  15. 15. Outreach Initiative: Major Findings 2 Factors Associated with Engagement Rumptz, et. al. 2007 AIDS Patient Care & STDs. <ul><li>58% become fully engaged in care (2 visits in 6 months) at 12 month follow up interval </li></ul><ul><li>Factors associated with engagement in care among those with change compared to those without: </li></ul><ul><ul><li>Discontinuation of drug use (4x) </li></ul></ul><ul><ul><li>Decreased structural/practical barriers to care* (3x) </li></ul></ul><ul><ul><li>Decrease in unmet needs** (3x) </li></ul></ul><ul><ul><li>Stable belief barriers (2.5x) </li></ul></ul>** 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
  16. 16. Outreach Initiative Major Findings 3: System Navigators Bradford, et. al. 2007 AIDS Patient Care & STDs. <ul><li>Patient Navigators: </li></ul><ul><ul><li>Care coordination model helps patients to </li></ul></ul><ul><ul><ul><li>Make better use of available resources </li></ul></ul></ul><ul><ul><ul><li>Develop effective communication with providers </li></ul></ul></ul><ul><ul><ul><li>Navigate complexities of multidisciplinary treatment </li></ul></ul></ul><ul><ul><li>May accompany patients to appointments </li></ul></ul><ul><ul><li>Teach patients to address barriers to care </li></ul></ul><ul><ul><li>May be peers or paraprofessionals, other than staff </li></ul></ul>
  17. 17. Outreach Initiative: Qualitative Findings Rajabiun 2007: AIDS Patient Care & STDs <ul><li>Determinants of sporadic use: </li></ul><ul><ul><li>level of acceptance of being diagnosed with HIV </li></ul></ul><ul><ul><li>ability to cope with substance use, mental illness, and stigma </li></ul></ul><ul><ul><li>health care provider relationships </li></ul></ul><ul><ul><li>presence of external support systems </li></ul></ul><ul><ul><li>ability to overcome practical barriers to care </li></ul></ul><ul><li>Outreach interventions helped connect participants to care by: </li></ul><ul><ul><li>dispelling myths and improving knowledge about HIV </li></ul></ul><ul><ul><li>facilitating access to HIV care and treatment </li></ul></ul><ul><ul><li>providing support </li></ul></ul><ul><ul><li>reducing the barriers to care </li></ul></ul>
  18. 18. Clinic Operation and Information System Strategies <ul><li>Clinic Organization </li></ul><ul><ul><li>Ensure coverage for provider vacations and time-off to avoid canceling or re-scheduling appointments </li></ul></ul><ul><ul><li>Establish patient database to track adherence with appointments </li></ul></ul><ul><li>Pre-Appointment </li></ul><ul><ul><li>Reminder cards with date/time/location of visit mailed to patients </li></ul></ul><ul><ul><li>Reminder calls made 48 hrs prior to appointment to allow patient time to make arrangements, if needed </li></ul></ul><ul><ul><li>Reminder calls to patients made by providers, case managers or other staff closely involved w/ patient's care </li></ul></ul><ul><ul><li>Schedule labs to be done prior to visits to maximize time spent w/ provider </li></ul></ul>
  19. 19. Increasing Patient and Staff Awareness <ul><li>Conduct new patient orientation sessions and include discussion of staying in care </li></ul><ul><li>Schedule one-to-one sessions for new patients unable to attend group orientations </li></ul><ul><li>Develop written patient materials on the importance of staying in care </li></ul><ul><li>Staff education - routinely discuss patient retention w/ all staff </li></ul>
  20. 20. Practical Strategies <ul><li>Partnerships with community-based agencies offer great potential </li></ul><ul><li>Supportive services, including navigation and case management, help increase retention by removing barriers and meeting needs </li></ul><ul><li>Provider engagement and behavior affects levels of and retention and decrease sporadic use: fortify relationships </li></ul>
  21. 21. Practical Strategies (2) <ul><li>Use peers </li></ul><ul><li>Target new patients </li></ul><ul><li>Help patients access needed services to remove barriers to care: transportation, mental health support, drug treatment </li></ul><ul><li>Reduce drug use </li></ul><ul><li>Dispel negative health beliefs </li></ul>
  22. 22. Contacts <ul><li>Bruce D. Agins, MD MPH </li></ul><ul><ul><li>Director, National HIVQUAL Project </li></ul></ul><ul><ul><li>Medical Director, NYSDOH AIDS Institute </li></ul></ul><ul><ul><li>[email_address] </li></ul></ul><ul><li>Kathleen Clanon, MD </li></ul><ul><li>NQC Consultant </li></ul><ul><li>[email_address] </li></ul>