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Patient Retention: A Perspective from the Literature
Elizabeth Horstmann
AIDS Institute
March 9, 2006
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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?
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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?
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How is patient retention measured?
• Missed appointments
• Visits at defined intervals over time
• Usage of health care system
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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.?)?
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Missed Appointment Rates Data
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Population Type of Appointment Included
No-Show Rate*
144 patients, public hospital ambulatory HIV clinic in Baton Rouge
Appts. with doctors or nurses
25.5%
(Catz, 1999)
671 patients, outpatient county (northern CA) treatment facility
Appts. including: intake assessments, routine checkups, medication checks and blood draws
25.5%
(Israelski, 2001)
114 patients, ambulatory HIV clinic of a public hospital
12 months after the initial appt.
35%
(McClure, 1999)
* Appts. not cancelled or rescheduled prior to appt.
HIV Specific No-Show Studies
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Percentage of Patients Who Miss Appointments
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Population Time Appt. Type % Missing Appointment
213 women Northern CA
3 month period
Primary care appts.
-37% missed ≥ 1 appt.(Palacio, 1999)
1680 patients
Italy
1-year and 2-year periods
“Follow-up” visit, every 4 months
-25% missed ≥ 1 visit in 1st year
- 34% in 2nd year(Arici, 2002)
354 patients, urban clinic
6-months of follow-up
“Clinic visit” -44.4% missed ≥ 2 visits in 6 months
-13.6% were lost to follow-up after first physician visit(Giordano, 2003)
1972 patients Brazil
6-month period
“Pre-booked medical appointment”
-14.0% missed 1 appt.
-13.7% missed ≥ 1 appt.(Nemes, 2004)
Proportion of HIV Patients Who Miss Appts.
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Unanswered Questions…
• How many patients missing appointments return to care?
• In what time period do they return to care?
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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
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Another Way of Measuring Patient Retention in HIV Care
Population Definition of Retention
Retention Rate
29,153 patients (includes children)
Multi-site(Ashman, 2002)
≥ 1 medical care visit during each of 4 6-month periods
-18% were retained
-55% received ≥ 1 primary care service in the 2-year period
999 patients, 99% Male, Community Health Center Boston (Lo, 2002)
≥ 1 primary care visit within every 6 months, for 2 years
-61% were retained
2,647 patients
Chicago(Sherer, 2002)
Presence of regular care in all 6-month periods, for 2 years
-55% were retained
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Another Measurement Approach
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
Dekker, 2003
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Value of Focusing on Patient Retention
• Better captures real concern – patients at
risk of falling out of care
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Which patients are we concerned about?
• Which patients miss appointments?
• Which patients are not retained?
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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)
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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)
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Who doesn’t come for care regularly?
• 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)
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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)
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Why do patients not come?Why do patients come?
S
P
O
R
A
D
I
C
E
N
G
A
G
E
D
Stigmas
Obstacles
Health Literacy
Connectedness
Mallinson et al., 2005
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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)
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Patients Lost to Follow Up: Who are they? Why have they
fallen out of care?
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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
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– 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
One-Visit Study – Queens General Hospital
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What are the costs of not retaining patients?
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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)
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Clinical Outcomes Related to Missed Appointments
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Population Appointments Health Outcome
123 patients, primary care clinic
(Rastegar, 2003)
Not specified which appts. included
Missed appts. associated with VL> 500 copies/mL
273 patients, large urban clinic
(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)
Health Outcomes Associated with No-Shows
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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 HAART 78% 64%*
Viral Load suppressed
(< 400 copies/ml)65% 31%*
Change in CD4 from Baseline +68 cells/mm3 -36 cells/mm3*
Health Resource Utilization
Hospital Admissions per year
(mean)2.2 days 3.2 days*
ED visits per year (mean) 3.2 6.8*
*All comparisons are significant with p <0.01 Johns Hopkins AIDS Service Data Base 1999-2000
Clinical Outcomes and Health Resource Utilization Stratified by Percentage of Missed Visits
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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.”
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Strategies for Improving Retention in HIV Patients
• Reducing missed appointments
• Supportive services data
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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
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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
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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
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Supportive Services Improve Patient Retention
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Population Definition of Retention
Services Associated w/Retention
29,153 patients
multisite(Ashman, 2002)
≥1 medical care visit during each of 4 6-month periods
Mental health* , Substance abuse* , Transportation*, Advocacy*
999 patients, community health center in Boston (Lo, 2002)
≥1 primary care visit within every 6 months, for 2 years
Mental health**, Case management*, HIV drug assistance program*, Food/nutrition**, Complementary services**
2,647 patients,
HIV primary care center in Chicago(Sherer, 2002)
Presence of regular care in all 6-month periods, for 2 years
* p ≤ 0.05
** p ≤ 0.005
Case management, transportation, mental health and chemical dependency were significantly more likely to receive any care, regular care and had more visits than patients with no services.
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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)
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Lessons from Other Chronic Diseases
• Engagement with health care and associated health outcomes
• Strategies to keep patients in care
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Lessons from DiabetesPopulation Engagement
MeasurementHealth Outcome
1347 diabetic patients belonging to an HMO for at least a year
(O’Connor, 1998)
Regular provider for diabetes
Patients with a regular provider were more likely to receive recommended elements of care and had better glycemic control
260 Type II Finnish diabetic adults, under 65 (Hanninen, 2001)
Regular care: Check-ups ≥ 2 times/year
Health related quality of life better for those with regular care
1400 diabetic adults in the NHANES survey (Mainous, 2004)
Usual site of care and/or usual provider when you get “sick”
Glycemic control was better for those with either a usual site or usual provider
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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)
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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”
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Questions about Conceptualizing Patient Retention
• Much of the literature is focused on missed appointments. What is the relationship between missed appointments and patient retention?
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Questions about Conceptualizing Patient Retention
• Is continuity of care the same thing as patient retention?
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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
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Acknowledgements
• Bruce Agins
• Johanna Buck
• HHC AI Quality Learning Network