Patient Retention: A Perspective from the Literature

1. Patient Retention: A Perspective from the Literature Elizabeth Horstmann AIDS Institute March 9, 2006

2. What can the literature tell us? • How are others measuring patient retention? • How many patients are not retained? • What patients are not retained? • Why are they not retained?

3. What can the literature tell us? • What are the costs of not retaining patients? • What are effective strategies for keeping people in care? • What can we learn from work with other chronic diseases? • What questions still haven’t been answered?

4. How is patient retention measured? • Missed appointments • Visits at defined intervals over time • Usage of health care system

5. Missed Appointments • The number of “no-show” (missed but not cancelled or rescheduled) appointments / the total number of patient appointments • One inconsistency: which appointments should be included (Only visits that involve a physician or nurse? Only primary care visits (no subspecialty appts.?)?

6. Missed Appointment Rates Data

7. HIV Specific No-Show Studies * Appts. not cancelled or rescheduled prior to appt.

8. Percentage of Patients Who Miss Appointments

9. Proportion of HIV Patients Who Miss Appts.

10. Unanswered Questions… • How many patients missing appointments return to care? • In what time period do they return to care?

11. Value of Focusing on Missed Appointments • Loss in revenue • Loss in time • Easy to measure and then generate list of patients to follow-up with

12. Another Way of Measuring Patient Retention in HIV Care

13. 161 HIV+ Patients in DC Metro Area Regular User (24.8%) Completes phlebotomy/medical appointments at minimum every 6 months Zero no-shows on all scheduled primary medical appts. All cancelled primary medical visits are rescheduled and completed Sporadic User (31.7%) Completes ≥1 phlebotomy and/or medical appts./year No-shows ≥2 primary medical appointments/year Utilizes HIV-urgent care clinic ≥1 time/yr Non-Engager (43.5%) Completes initial phlebotomy and/or primary medical appointment and does not return after that Another Measurement Approach Dekker, 2003

14. Value of Focusing on Patient Retention • Better captures real concern – patients at risk of falling out of care

15. Which patients are we concerned about? • Which patients miss appointments? • Which patients are not retained?

16. Who misses appointments? • Demographic • Minority (African American specifically) (Catz, 1999; Lucas, 1999; Israelski, 2001; Kissinger, 1995) • Younger Age (Israelski, 2001; Catz, 1999; Lucas, 1999; Poole, 2001) • Heterosexual Orientation (Israelski, 2001) • Education (less than high school) (Poole, 2001) • Lack of health insurance (Palacio, 1999) • Lower household income (Israelski, 2001)

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. Demographic African American (Dekker, 2003) Female gender (Sherer, 2002) Younger Age (Sherer, 2002; Ashman, 2002) Self-pay status (Sherer, 2002; Lo, 2002) Unemployed (Dekker, 2003) Clinical Higher VL (Sherer, 2002) Psychiatric Illness (Ashman, 2002) Other IDU (Sherer, 2002; Ashman, 2002; Dekker, 2003) Who doesn’t come for care regularly?

19. 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)

20. Why do patients not come?Why do patients come? S P O R A D I C E N G A G E D Health Literacy Stigmas Connectedness Obstacles Mallinson et al., 2005

21. 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)

22. Patients Lost to Follow Up: Who are they? Why have they fallen out of care?

23. Patients Lost to Follow Up • Client Advocate hired to locate 503 patients who had been out of care for at least one year (Dallas) • 53% of patients lost to follow up were located • Reasons for leaving care: incarceration, relocation, fear, frustration with health systems, death and health insurance issues • Conclusion: Personal contact is an essential element of successful return strategies Waelder, 2002

24. One-Visit Study – Queens General Hospital • 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

25. What are the costs of not retaining patients?

26. Clinical Concerns • Patients with missed appts. are less likely to receive HAART (Giordano, 2003) • Greater the number of missed appts., the less adherent to taking ARVs (Nemes, 2004)

27. Clinical Outcomes Related to Missed Appointments

28. Health Outcomes Associated with No-Shows

29. Clinical Outcomes and Health Resource Utilization Stratified by Percentage of Missed Visits

30. Clinical Concerns • Berg, 2005 • 946 individual with HIV in primary care at an urban community health centre in Boston • Included only patients with 2 appts. “made” over the 12-month span • “Appointment nonadherence over the previous year was a significant predictor of having an AIDS-defining CD4 count over and above the significant effects of number of kept appointments, and whether or not the patient was taking HAART.”

31. Strategies for Improving Retention in HIV Patients • Reducing missed appointments • Supportive services data

32. Retention at Brooklyn Hospital Center • Population: 800 HIV+ patients • Intervention • Reminder calls before appts. (3 attempts) • Updated patients’ phone number and address at each visit • Attempted to reach no-shows through emergency contacts and community agencies • Peer educators phoned patients missing 3 consecutive appts. • Outcome: • Reached more patients by reminder calls 69% vs. 80% • Patients rescheduling after missed appt. improved 52% vs. 60% Sendzik, 2004

33. Ongoing Whitman-Walker Study • Ongoing 5-year federally funded study • 100 HIV+ patients paired with “retention care coordinators” (RCCs) • RCCs make reminder calls about appts., ensure transportation to clinics and accompany patients to appts. making sure they understand the information provided • Preliminary data suggest the intervention is effective in reducing no-shows (16 vs. 25%) Ukman, 2005

34. Clinic/Facility Factors • Mail survey of 138 HIV treatment facilities in the US • Clinics with less than 4 providers and that offer mental health services have fewer patients missing appointments Wohler-Torres, 2002

35. Supportive Services Improve Patient Retention

37. Supportive Services and Specific Groups • Retaining HIV+ and At-Risk Youth • For both males and females, ≥ 2 outreach contacts or case management at ≥3 visits improved retention • For males, ≥ 2 mental health counseling sessions increased retention (Harris, 2003) • Retaining homeless clients (in substance abuse treatment) • Providing housing improved retention • Making midcourse adjustments (Orwin, 1999)

38. Lessons from Other Chronic Diseases • Engagement with health care and associated health outcomes • Strategies to keep patients in care

39. Lessons from Diabetes

40. Reducing Missed Appointments • Reminders (Maxwell, 2001; Hashim, 2001; Moser, 1994; Benjamin-Bauman, 1984) • Open access scheduling system (Kennedy, 2003; Cascardo, 2005) • Exit interviews(Guse, 2003) • Patient orientation to the clinic (Macharia, 1992; Barry, 1984) • Contracting with patients (Macharia, 1992) • Increasing social support (Tanner, 1997) • Case manager involvement (Blank, 1996)

41. Ideas for Interventions: Diabetes Griffin et al. (1998) reviewed studies on diabetes and missed appointments, “defaulters”, and recommended that the “focus of the research should move away from appointment reminders towards interventions targeting the delivery of health care and the health professional-patient relationship which are more likely to be stronger predictors of default”

42. Questions about Conceptualizing Patient Retention • Much of the literature is focused on missed appointments. What is the relationship between missed appointments and patient retention?

43. Questions about Conceptualizing Patient Retention • Is continuity of care the same thing as patient retention?

44. What We Know… • A significant number of patients are not retained • Not being retained has important consequences for both individual and public health • Strategies most likely to be effective for improving patient retention are ones focused on improving the process of care

45. Acknowledgements • Bruce Agins • Johanna Buck • HHC AI Quality Learning Network