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

INTRODUCTION Important to understand personal characteristics, contexts, and needs that might create barriers to access and retention in HIV medical care Important to understand personal characteristics, contexts, and needs that might create barriers to access and retention in HIV medical care CHAIN Study provides broad range of evidence about service needs, service utilization, and barriers to care from the point of view of persons living with HIV/AIDS CHAIN Study provides broad range of evidence about service needs, service utilization, and barriers to care from the point of view of persons living with HIV/AIDS Quantitative: Over time analysis of service need, service utilization, and connection to HIV care Quantitative: Over time analysis of service need, service utilization, and connection to HIV care Qualitative: Answers to direct questions about barriers to care Qualitative: Answers to direct questions about barriers to care

More and Less Engaged among PLWH Currently in Care CHAIN New Cohort, 2002, n=684

PREDICTORS OF CONNECTION TO CARE P Socio-demographics: Age, ethnicity, education, income <$7500 yr, living in poverty neighborhood, risk exposure group P Health status: T-cell count, date of HIV diagnosis P Service need (Comorbidities): Low mental health functioning Current problem drug user Current problem drug user  Service need (Care coordination): No regular source of medical care at HIV diagnosis No regular source of medical care at HIV diagnosis No medical insurance No medical insurance  Service need (Reported social service need) Housing - homeless, unstably housed or reported housing problem or need for housing assistance Transportation - reported transportation problem or lack of transportation was barrier to service use

PREDICTORS OF CONNECTION TO CARE P Services received (Comorbidities) One or more visits to mental health professional past 6 months One 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) Case manager helped get medical services or referred to medical services past 6 months  Services received (Care coordination - social services) Case manager developed a care plan, helped get or referred to specific social services, coordinated social services Case manager developed a care plan, helped get or referred to specific social services, coordinated social services  Services received (Specific services) Received rental assistance or assistance with housing needs Received rental assistance or assistance with housing needs Received transportation services Received transportation services

ANALYSIS  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 examine which predictors are associated with medical care outcomes 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

Increasing the Odds of HIV Medical Care

Supportive Services and Access to Care Has Any Medical Care Appropriate Clinical Care Mental health services Mental health services1.94 ***1.38 *** Substance abuse treatment Substance abuse treatment (0.91) 1.25 * Case management: medical Case management: medical (1.40) # (1.40) # (1.10) (1.10) Case management: social services Case management: social services2.30 ***1.66 *** Housing assistance Housing assistance 2.21 *** 1.45 *** Transportation services Transportation services (1.12) (1.12) (1.09) (1.09) N=1651 individuals, 5865 observations, # 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 Care Continuity of Any Medical Care Continuity of Appropriate Clinical Care Mental health services Mental health services(1.12) 1.56 *** Substance abuse treatment Substance abuse treatment (0.97) (1.16) Case management: medical Case management: medical (0.89) (0.89) (1.23) (1.23) Case management: social services Case management: social services (1.17)#1.32 * Housing assistance Housing assistance 1.20 * (1.21) # Transportation services Transportation services (0.88) (0.88)(1.20) Models control for socio-demographics, health status, service need, and year of cohort enrollment N=1295 individuals interviewed 2+ times, observations, # p <.10 * p <. 05 ** p <.01 *** p <.001

Supportive Services and (re)Entry to Care Entry into Any Medical Care Entry into Appropriate Clinical Care Mental health services Mental health services 2.54 *(1.23) Substance abuse treatment Substance abuse treatment (1.54) (1.40) Case management: medical Case management: medical (1.41) (1.41) (0.81) (0.81) Case management: social services Case management: social services 1.96 * 1.80 ** Housing assistance Housing assistance 2.04 * 1.79 *** Transportation services Transportation services (2.23) (2.23)(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,

Reasons Given for Dropping Out of Care % Doing drugs, relapsed Doing drugs, relapsed27 Didn’t care about treatment, just stopped 19 Disruption in care – program closed, doctor left, I moved Disruption in care – program closed, doctor left, I moved13 In denial about HIV, didn’t want to face it In denial about HIV, didn’t want to face it11 Did not want HIV medications, wanted to discontinue meds Did not want HIV medications, wanted to discontinue meds11 Tired of it, was fed up, wanted a break Tired of it, was fed up, wanted a break9 Did not like doctor, services were poor Did not like doctor, services were poor8 Felt fine, wasn’t sick, no symptoms Felt fine, wasn’t sick, no symptoms7 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 needs Homeless, other competing needs27 Feel fine, not sick, no symptoms 19 Doing drugs, relapsed Doing drugs, relapsed13 Do not want HIV medications/ wanted to stop medications Do not want HIV medications/ wanted to stop medications11 Tired of it, was fed up, wanted a break Tired of it, was fed up, wanted a break9 Disruption in care – program closed, doctor left, I moved Disruption in care – program closed, doctor left, I moved8 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 In the last 6 months did you delay or not get medical care or assistance you thought you needed because: NYC Tri Co Staff at clinic do not speak your language Staff at clinic do not speak your language2%3% Costs too much or wasn’t covered by insurance 4%10% Didn't know or weren't sure where to go Didn't know or weren't sure where to go5%5% Difficult to get transportation there Difficult to get transportation there11%12% Needed someone to take care of children Needed someone to take care of children2%4% Took too long, difficult to make appointment Took too long, difficult to make appointment8%7% Any of the above logistical barriers Any of the above logistical barriers22%22% Most recent interview, NYC n=475; Tri-Co n=232

Checklist of Barriers to Medical Care In the last 6 months did you delay or not get medical care or assistance you thought you needed because: NYC Tri Co You didn’t trust the provider to be confidential about You didn’t trust the provider to be confidential about your HIV status your HIV status3%3% The staff are often not polite, are disrespectful or insensitive to your needs insensitive to your needs9%8% Staff are not good at listening to your problems or Staff are not good at listening to your problems or needs needs9%6% You weren't sure that the staff would understand You weren't sure that the staff would understand your problem your problem7%5% You felt the staff was not competent to deal with You felt the staff was not competent to deal with your problem your problem7%5% Any of the above provider related barriers Any of the above provider related barriers 15 % 15 % 13 % Most recent interview, NYC n=475; Tri-Co n=232

Biggest Difficulty Getting Medical Care SELF-DESCRIBED PROBLEM PAST 6 MONTHS NYC( ) Total Sample (n=) (481) No problem getting medical care Had problem getting medical care 83% 83%17 Among those reporting problems (n=)(80) Need more caring or competent doctor 25% Problems with medical insurance 23% Need treatment or specialist care 20% Problems with medical facility 18% Logistical access problems 15% Problems with medications, getting medications 13%

Biggest Difficulty Getting Non-Med Services SELF-DESCRIBED PROBLEM PAST 6 MONTHS NYC( ) Total Sample (n=) (481) No problem getting non-medical services Had problem getting services/ addressing needs 70% 70%30 Among those reporting problems (n=)(142) Housing problems, need housing assistance 37% Financial difficulties, need assistance 20% Problems with benefits, entitlements 16% Problems with HASA/ DASIS 13% Need clothing, household items 6% Problems with homecare 6%

Conclusions Non-medical service needs are negatively associated with entry, access, and maintenance in HIV medical care Non-medical service needs are negatively associated with entry, access, and maintenance in HIV medical care Supportive services demonstrate a significant impact on increasing access and maintenance in HIV medical care Supportive services demonstrate a significant impact on increasing access and maintenance in HIV medical care Supportive services appear to enhance access and retention in care by addressing complex individual (mental illness, substance abuse) and social (housing instability) barriers to care Supportive services appear to enhance access and retention in care by addressing complex individual (mental illness, substance abuse) and social (housing instability) barriers to care Consumers report logistical barriers to accessing medical and social services as well as desire for better relationship and communication with providers Consumers report logistical barriers to accessing medical and social services as well as desire for better relationship and communication with providers

ACKNOWLEDGEMENTS 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: