Patient Retention: A Perspective from the Literature

Elizabeth Horstmann

AIDS Institute

March 9, 2006

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?

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?

How is patient retention measured?

• Missed appointments

• Visits at defined intervals over time

• Usage of health care system

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.?)?

Missed Appointment Rates Data

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

Percentage of Patients Who Miss Appointments

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.

Unanswered Questions…

• How many patients missing appointments return to care?

• In what time period do they return to care?

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

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

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

Value of Focusing on Patient Retention

• Better captures real concern – patients at

risk of falling out of care

Which patients are we concerned about?

• Which patients miss appointments?

• Which patients are not retained?

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)

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)

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)

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)

Why do patients not come?Why do patients come?

S

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Stigmas

Obstacles

Health Literacy

Connectedness

Mallinson et al., 2005

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)

Patients Lost to Follow Up: Who are they? Why have they

fallen out of care?

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

– 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

What are the costs of not retaining patients?

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)

Clinical Outcomes Related to Missed Appointments

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

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

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.”

Strategies for Improving Retention in HIV Patients

• Reducing missed appointments

• Supportive services data

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

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

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

Supportive Services Improve Patient Retention

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.

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)

Lessons from Other Chronic Diseases

• Engagement with health care and associated health outcomes

• Strategies to keep patients in care

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

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)

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”

Questions about Conceptualizing Patient Retention

• Much of the literature is focused on missed appointments. What is the relationship between missed appointments and patient retention?

Questions about Conceptualizing Patient Retention

• Is continuity of care the same thing as patient retention?

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

Acknowledgements

• Bruce Agins

• Johanna Buck

• HHC AI Quality Learning Network