Access to Care/ Maintenance in Care:

Service Needs and Consumer Reported Barriers

Angela Aidala, Gunjeong Lee, Brooke West Mailman School of Public Health, Columbia University

DATA DAY PRESENTATION

JUNE 5, 2008

INTRODUCTIONINTRODUCTION

Important to understand personal characteristics, Important to understand personal characteristics, contexts, and needs that might create barriers to contexts, and needs that might create barriers to access and retention in HIV medical careaccess and retention in HIV medical care

CHAIN Study provides broad range of evidence CHAIN Study provides broad range of evidence about service needs, service utilization, and barriers about service needs, service utilization, and barriers to care from the point of view of persons living with to care from the point of view of persons living with HIV/AIDSHIV/AIDS

Quantitative: Over time analysis of service need, Quantitative: Over time analysis of service need, service utilization, and connection to HIV care service utilization, and connection to HIV care

Qualitative: Answers to direct questions about Qualitative: Answers to direct questions about barriers to carebarriers to care

More and Less Engaged among PLWH Currently in Care

21%

8%

61%

39%

26%

0%

10%

20%

30%

40%

50%

60%

70%

ConsistentlyIn Care

Delayer orDrop-out

Delayer 6mo Drop-out6mo

Both

CHAIN New Cohort, 2002, n=684

PREDICTORS OF CONNECTION TO PREDICTORS OF CONNECTION TO CARECARE

P Socio-demographics: Age, ethnicity, education, income Socio-demographics: Age, ethnicity, education, income <$7500 yr, living in poverty neighborhood, risk exposure group<$7500 yr, living in poverty neighborhood, risk exposure group P Health status: T-cell count, date of HIV diagnosisHealth status: T-cell count, date of HIV diagnosis

P Service need (Comorbidities): Service need (Comorbidities):

Low mental health functioningLow mental health functioning

Current problem drug userCurrent problem drug user

Service need (Care coordination):Service need (Care coordination): No regular source of medical care at HIV diagnosisNo regular source of medical care at HIV diagnosis

No medical insuranceNo medical insurance

Service need (Reported social service need)Service need (Reported social service need)

Housing - homeless, unstably housed or reported housing Housing - homeless, unstably housed or reported housing problem or need for housing assistance problem or need for housing assistance

Transportation - reported transportation problem or lack of Transportation - reported transportation problem or lack of transportation was barrier to service use transportation was barrier to service use

PREDICTORS OF CONNECTION TO PREDICTORS OF CONNECTION TO CARECARE

P Services received (Comorbidities)Services received (Comorbidities)

One or more visits to mental health professional past 6 monthsOne or more visits to mental health professional past 6 months

Professional alcohol or drug treatment services past 6 months Professional alcohol or drug treatment services past 6 months

Services received (Care coordination - medical)Services received (Care coordination - medical)Case manager helped get medical services or referred to medical Case manager helped get medical services or referred to medical services past 6 monthsservices past 6 months

Services received (Care coordination - social services)Services received (Care coordination - social services)

Case manager developed a care plan, helped get or referred Case manager developed a care plan, helped get or referred to to specific social services, coordinated social servicesspecific social services, coordinated social services

Services received (Specific services)Services received (Specific services)

Received rental assistance or assistance with housing needsReceived rental assistance or assistance with housing needs

Received transportation servicesReceived transportation services

ANALYSISANALYSIS

Logistical regression used to compare the odds of medical care outcome associated with housing need vs. no housing need

Also examine receipt of housing assistance vs. no assistance

Adjusted odds ratios show odds of outcomes controlling for mental health and substance use co-morbidities, receipt of supportive services, socio-demographics, and time period

Each interview with each participant provides opportunity to examinewhich predictors are associated with medical care outcomes -1660 individuals interviewed 1-8 times for a total of over 5000 observation points

Models constructed using GEE procedures to adjust for dependency among multiple observations contributed by the same individual

0

0.5

1

1.5

2

2.5

Low mental health

Problem drug use

No MD prior to HIV dx

No insurance

Housing need

Transporation need

Prof MH services

Prof drug treatment

Case mgmt: medical

Case mgmt: soc svc

Housing assistance

Transportation svcs

Increasing the Odds of HIV Medical Care

Supportive Services and Access to Supportive Services and Access to CareCare

Has Any Has Any Medical CareMedical Care

AppropriateAppropriateClinical CareClinical Care

Mental health servicesMental health services 1.94 *** 1.38 ***

Substance abuse treatmentSubstance abuse treatment (0.91) 1.25 *

Case management: medicalCase management: medical (1.40) #(1.40) # (1.10) (1.10)

Case management: social servicesCase management: social services 2.30 *** 1.66 ***

Housing assistanceHousing assistance 2.21 *** 1.45 ***

Transportation servicesTransportation services (1.12) (1.12) (1.09)(1.09)

N=1651 individuals, 5865 observations, 1994 - 2007 # p < .10 * p <. 05 ** p < .01 *** p <.001

Models control for socio-demographics, health status, service need, and year of cohort enrollment

Supportive Services and Continuity of Supportive Services and Continuity of CareCare

Continuity of Continuity of Any Medical Any Medical

CareCare

Continuity of Continuity of AppropriateAppropriateClinical CareClinical Care

Mental health servicesMental health services (1.12) 1.56 ***

Substance abuse treatmentSubstance abuse treatment (0.97) (1.16)

Case management: medicalCase management: medical (0.89) (0.89) (1.23) (1.23)

Case management: social servicesCase management: social services (1.17)# 1.32 *

Housing assistanceHousing assistance 1.20 * (1.21) #

Transportation servicesTransportation services (0.88) (0.88) (1.20)(1.20)

Models control for socio-demographics, health status, service need, and year of cohort enrollment

N=1295 individuals interviewed 2+ times, 53759 observations, 1994 - 2007. # p < .10 * p <. 05 ** p < .01 *** p <.001

Supportive Services and (re)Entry to Supportive Services and (re)Entry to CareCare

Entry into Entry into Any Medical Any Medical

CareCare

Entry into Entry into AppropriateAppropriateClinical CareClinical Care

Mental health servicesMental health services 2.54 * (1.23)

Substance abuse treatmentSubstance abuse treatment (1.54) (1.40)

Case management: medicalCase management: medical (1.41) (1.41) (0.81) (0.81)

Case management: social servicesCase management: social services 1.96 * 1.80 **

Housing assistanceHousing assistance 2.04 * 1.79 ***

Transportation servicesTransportation services (2.23) (2.23) (0.84)(0.84)

Models control for socio-demographics, health status, service need, and year of cohort enrollment

N=557 individuals who were not in care at one or more interviews, 720 observations, 1994 - 2007

Reasons Given for Dropping Out of Care

%%

Doing drugs, relapsedDoing drugs, relapsed 2727

Didn’t care about treatment, just stoppedDidn’t care about treatment, just stopped 1919

Disruption in care – program closed, doctor left, I movedDisruption in care – program closed, doctor left, I moved 1313

In denial about HIV, didn’t want to face itIn denial about HIV, didn’t want to face it 1111

Did not want HIV medications, wanted to discontinue medsDid not want HIV medications, wanted to discontinue meds 1111

Tired of it, was fed up, wanted a break Tired of it, was fed up, wanted a break 99

Did not like doctor, services were poorDid not like doctor, services were poor 88

Felt fine, wasn’t sick, no symptomsFelt fine, wasn’t sick, no symptoms 77

NYC new cohort with one or more experience of dropping out of care (n=124)NYC new cohort with one or more experience of dropping out of care (n=124)

Thematic coding of client descriptions of reasons for dropping out of HIV medical care. Multiple responses possible

Reasons Given for Not Being in Care among the Unconnected

%%

Homeless, other competing needsHomeless, other competing needs 2727

Feel fine, not sick, no symptomsFeel fine, not sick, no symptoms 1919

Doing drugs, relapsedDoing drugs, relapsed 1313

Do not want HIV medications/ wanted to stop medicationsDo not want HIV medications/ wanted to stop medications 1111

Tired of it, was fed up, wanted a breakTired of it, was fed up, wanted a break 99

Disruption in care – program closed, doctor left, I moved Disruption in care – program closed, doctor left, I moved 88

Total sample outside of care (n=25)

Thematic coding of client descriptions of reasons for never accessing medical care or dropping out of care

Multiple responses possible

Checklist of Barriers to Medical Care Checklist of Barriers to Medical Care

In the last 6 months did you delay or not get In the last 6 months did you delay or not get medical care or assistance you thought you medical care or assistance you thought you needed because: needed because:

NYCNYC Tri CoTri Co

Staff at clinic do not speak your languageStaff at clinic do not speak your language 2%2% 3%3%

Costs too much or wasn’t covered by insuranceCosts too much or wasn’t covered by insurance 4%4% 10%10%

Didn't know or weren't sure where to goDidn't know or weren't sure where to go 5%5% 5%5%

Difficult to get transportation thereDifficult to get transportation there 11%11% 12%12%

Needed someone to take care of childrenNeeded someone to take care of children 2%2% 4%4%

Took too long, difficult to make appointmentTook too long, difficult to make appointment 8%8% 7%7%

Any of the above logistical barriersAny of the above logistical barriers 22%22% 22%22%

Most recent interview, 2005-2007 NYC n=475; Tri-Co n=232

Checklist of Barriers to Medical Care Checklist of Barriers to Medical Care

In the last 6 months did you delay or not get In the last 6 months did you delay or not get medical care or assistance you thought you medical care or assistance you thought you needed because: needed because:

NYCNYC Tri CoTri Co

You didn’t trust the provider to be confidential about You didn’t trust the provider to be confidential about your HIV statusyour HIV status

3%3% 3%3%

The staff are often not polite, are disrespectful or The staff are often not polite, are disrespectful or insensitive to your needsinsensitive to your needs

9%9% 8%8%

Staff are not good at listening to your problems or Staff are not good at listening to your problems or needsneeds

9%9% 6%6%

You weren't sure that the staff would understand You weren't sure that the staff would understand your problemyour problem

7%7% 5%5%

You felt the staff was not competent to deal withYou felt the staff was not competent to deal with your problemyour problem

7%7% 5%5%

Any of the above provider related barriersAny of the above provider related barriers 15 %15 % 13 %13 %

Most recent interview, 2005-2007 NYC n=475; Tri-Co n=232

Biggest Difficulty Getting Medical Biggest Difficulty Getting Medical CareCare

SELF-DESCRIBED PROBLEM PAST 6 MONTHSSELF-DESCRIBED PROBLEM PAST 6 MONTHSNYCNYC

(2005-2006)(2005-2006)

Total Sample (n=)Total Sample (n=) (481)(481)

No problem getting medical careNo problem getting medical care

Had problem getting medical careHad problem getting medical care

83%83%

1717

Among those reporting problems (n=) (80)

Need more caring or competent doctorNeed more caring or competent doctor 25%25%

Problems with medical insuranceProblems with medical insurance 23%23%

Need treatment or specialist careNeed treatment or specialist care 20%20%

Problems with medical facilityProblems with medical facility 18%18%

Logistical access problemsLogistical access problems 15%15%

Problems with medications, getting medicationsProblems with medications, getting medications 13%13%

Biggest Difficulty Getting Non-Med Biggest Difficulty Getting Non-Med ServicesServices

SELF-DESCRIBED PROBLEM PAST 6 MONTHSSELF-DESCRIBED PROBLEM PAST 6 MONTHSNYCNYC

(2005-2006)(2005-2006)

Total Sample (n=)Total Sample (n=) (481)(481)

No problem getting non-medical servicesNo problem getting non-medical services

Had problem getting services/ addressing needsHad problem getting services/ addressing needs

70%70%

3030

Among those reporting problems (n=) (142)

Housing problems, need housing assistanceHousing problems, need housing assistance 37%37%

Financial difficulties, need assistanceFinancial difficulties, need assistance 20%20%

Problems with benefits, entitlementsProblems with benefits, entitlements 16%16%

Problems with HASA/ DASISProblems with HASA/ DASIS 13%13%

Need clothing, household itemsNeed clothing, household items 6%6%

Problems with homecareProblems with homecare 6%6%

ConclusionsConclusions Non-medical service needs are negatively Non-medical service needs are negatively

associated with entry, access, and maintenance in associated with entry, access, and maintenance in HIV medical care HIV medical care

Supportive services demonstrate a significant Supportive services demonstrate a significant impact on increasing access and maintenance in impact on increasing access and maintenance in HIV medical careHIV medical care

Supportive services appear to enhance access and Supportive services appear to enhance access and retention in care by addressing complex individual retention in care by addressing complex individual (mental illness, substance abuse) and social (mental illness, substance abuse) and social (housing instability) barriers to care(housing instability) barriers to care

Consumers report logistical barriers to accessing Consumers report logistical barriers to accessing medical and social services as well as desire for medical and social services as well as desire for better relationship and communication with better relationship and communication with providersproviders

ACKNOWLEDGEMENTSACKNOWLEDGEMENTS

This research was made possible by a series of grants from the US Health Resources and Service Administration (HRSA) under Title I of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act and contracts with the New York City HIV Health and Human Services Planning Council through the New York City Department of Health and Medical and Health Research Association of New York City

Its contents are solely the responsibility of the Researchers and do not necessarily represent the official views of the U.S. Health Resources and Services Administration, the City of New York, or the Medical and Health Research Association..

Special thanks is due to the 1661 persons living with HIV who have participated in the CHAIN Project and shared their experiences with us.

Contact: aaa1@columbia.edu