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THE HIVQUAL PROJECTNYS Dept of Health AIDS Institute

DHHS/HRSA/HAB Division of Community-Based Programs

Engagement in Care: What Do Engagement in Care: What Do We Know?We Know?

Courtesy

Bruce Agins, MD MPHbda01@ health.state.ny.us



2

ContinuumEngagement 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 Infrequent User

Fully Engaged in HIV Primary Medical Care

Not inCare

Fully Engaged

Non-engager Sporadic User

FullyEngaged

Health Resources Service Administration (HRSA)



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)



Missed Visits and MortalityMugavero, et. al. 2009 UAB. CID 48:248-56.

543 new patients followed who were alive 12 months after their first visit

Visits during first 12 months of care analyzed from 1/00-12-05 325 pts (60%) missed visit in first year 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]

No difference in mortality based on whether 1 or >1 visit missed Predictors of missed visits: younger/female/black/risk other than

MSM/public insurance/substance use disorders



Measurement

What is the extent of the problem?

No-shows

Retention rates

But, why??



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?



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



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



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)



Why Do HIV Patients Not Come to Clinic?

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)



Evidence Base for Strategies to Connect Patients to Care



ARTAS StudyGardner 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.

Prospective randomized design of up to 5 brief case management interventions in patients with only one provider visit; n=173

More participants receiving CM intervention had a provider visit in each of 2 consecutive 6 month periods compared to controls (78% versus 60%)

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



Outreach Initiative:HRSA SPNS Multi-site Evaluation

Goals: To engage people in HIV care Turn sporadic users of care into regular users Promote retention in care

Program models Scripted behavioral interventions, accompanying clients to

appointments, home-based services, health literacy & life skills training

Evaluation Quantitative and qualitative methodologies Link to outcomes



Outreach Initiative: Major Findings (Cabral, et. al. 2007; AIDS Patient Care & STDs)

Increased frequency of contact results in fewer gaps in care during first 12 months of follow-up

773 patients from 7 sites followed and interviewed Purposive sampling; prospective nonrandomized with single arm Contact by clinicians, peers, and paraprofessionals Contact may occur in office, out of office, not face-to-face

Types of contacts: 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

Patients with 9 contacts during first 3 months were about half as likely to have a substantial gap



Outreach Initiative: Major Findings 2Factors Associated with Engagement

Rumptz, et. al. 2007 AIDS Patient Care & STDs.

58% become fully engaged in care (2 visits in 6 months) at 12 month follow up interval

Factors associated with engagement in care among those with change compared to those without: Discontinuation of drug use (4x) Decreased structural/practical barriers to care* (3x) Decrease in unmet needs** (3x) Stable belief barriers (2.5x)

** 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



Outreach Initiative Major Findings 3:System Navigators

Bradford, et. al. 2007 AIDS Patient Care & STDs.

Patient Navigators: Care coordination model helps patients to

Make better use of available resources

Develop effective communication with providers

Navigate complexities of multidisciplinary treatment

May accompany patients to appointments

Teach patients to address barriers to care

May be peers or paraprofessionals, other than staff



Outreach Initiative: Qualitative FindingsRajabiun 2007: AIDS Patient Care & STDs

Determinants of sporadic use: level of acceptance of being diagnosed with HIV ability to cope with substance use, mental illness, and stigma health care provider relationships presence of external support systems ability to overcome practical barriers to care

Outreach interventions helped connect participants to care by: dispelling myths and improving knowledge about HIV facilitating access to HIV care and treatment providing support reducing the barriers to care



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



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



Practical Strategies

Partnerships with community-based agencies offer

great potential

Supportive services, including navigation and case

management, help increase retention by removing

barriers and meeting needs

Provider engagement and behavior affects levels of

and retention and decrease sporadic use: fortify

relationships



Practical Strategies (2)

Use peers

Target new patients Help patients access needed services to remove

barriers to care: transportation, mental health support, drug treatment

Reduce drug use

Dispel negative health beliefs



Contacts

Bruce D. Agins, MD MPHDirector, National HIVQUAL ProjectMedical Director, NYSDOH AIDS Institute

[email protected]

Kathleen Clanon, MDNQC Consultant

[email protected]

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