1. Preliminary Return-to-Care (RTC) Survey Results
Monique-Nicole Anthony, MPH
NYC DOHMH
Care, Treatment, and Housing Program
PSRA Committee Data Day
June 5, 2008

2. RTC Survey Preliminary Results
Background
To ensure that Ryan White Part A service priority recommendations are in line with consumer needs
To investigate the barriers to and facilitators for primary care engagement among consumers previously out of care
June 5, 2008
RTC Survey Preliminary Results

3. RTC Survey Preliminary Results
Methods
Cross-Sectional study design
Internal review process
NYCDOHMH
Consumer Committee
Consumer Advisory Group to the planning council
Conducted at 4 clinical sites in NYC between April 2008 and June 2008
Jacobi, St. Vincent’s, Cumberland & Bellevue Hospitals
N=41 Survey Respondents
June 5, 2008
RTC Survey Preliminary Results

4. RTC Survey Preliminary Results
Methods (Cont’d)
Surveys were administered online via Survey Monkey and in paper format
34% (n=13) completed computer-based
65% (N=25) completed paper-based
Paper surveys were collected and data entered online
A 39-Question survey instrument was developed
Survey topics include:
Health Care & Social Services utilization and need
Barriers to HIV Medical Care
Provider assistance with getting back into HIV Medical Care
Other reasons for seeking or not seeking HIV medical Care
Software applications include Survey Monkey, Excel & SAS
June 5, 2008
RTC Survey Preliminary Results

5. Respondent Characteristics: Gender, Race/Ethnicity & Age%
Gender
Female
Male
(missing N=3) 15 23 39 61
Race
White
Black/African American
Asian
Native Hawaiian or Other Pacific Islander
American Indian or Alaskan native 6 28 3 1 16 74 8 2
Ethnicity
Hispanic
Non-Hispanic 9 29 24
Age
Under 20 years
21 years – 40 years
41 years – 60 years
60 years or older 65
Respondents are mostly Male (61%)
predominantly Black/ African American (74%);
Non-Hispanic (74%);
And Between the ages of 41 to 60 years (65%); The mean age is 46 with a range from 19 to 65
June 5, 2008
RTC Survey Preliminary Results

6. Respondent Characteristics: Residence
The majority of respondents live in the Bronx (38%) and Brooklyn (34%)
June 5, 2008
RTC Survey Preliminary Results

7. Respondent Characteristics: Insurance
Medicaid is the primary source of insurance for respondents.
Note: Family Health Plus, Child Health Plus and Veteran’s Assistance all had a value of 0.
Note: Family Health Plus, Child Health Plus and Veteran’s Assistance all have a value of 0.
June 5, 2008
RTC Survey Preliminary Results

8. Additional Respondent Characteristics
82% of respondents are US born
82% earn less than $7,500 US/year
June 5, 2008
RTC Survey Preliminary Results

9. RTC Survey Results

10. RTC Survey Preliminary Results
RTC Survey Results
Service Utilization
Barriers/Facilitators
The Results can be describe in two segments:
First, Service Utilization
And Second, Barriers & Facilitators to engagement in Medical Care
June 5, 2008
RTC Survey Preliminary Results

11. RTC Survey Preliminary Results
RTC Survey Results
Service Utilization
Service Utilization
June 5, 2008
RTC Survey Preliminary Results

12. Health Care & Social Services
Participants were presented with a list of service descriptions based on Ryan White Part A service categories and were asked to check all that they had used in the past 6 months.
For this reason, some respondents checked multiple services, therefore the percentages (%) do not add up to 100%.
The following table shows the services used by respondents within the past 6 months.
The key services include:
HIV primary care
HIV Counseling
Treatment Adherence
Case Management
& Prescription drug assistance
June 5, 2008
RTC Survey Preliminary Results

13. Health Care & Social Services
Most needed Services:
Response Count
Response
Percent
HIV primary care 30
73.2%
Help insurance costs 11
26.8%
Prescription drug assistance 7
17.1%
Mental health services
HIV counseling 6
14.6%
Respondents were also asked to identify which services were most needed of those used in the past 6 months.
Overall the top 5 services that are needed the most by respondents are:
HIV primary care,
Assistance with insurance costs & premiums
Prescription drug assistance
Mental Health Services
And HIV Counseling & Education services
Comparing Services utilized in the past 6 months to the most needed services in the past 6 months, HIV primary care, Prescription drug assistance and HIV counseling were consistent, however insurance & mental health services were considered most needed.
June 5, 2008
RTC Survey Preliminary Results

14. Health Care & Social Services
Respondents were asked to describe their frequency of service utilization in the past 6 months. The most frequently used services included:
HIV Primary care
Assistance with insurance costs & premiums
Mental health services
HIV Counseling & Education
And Housing Assistance.
June 5, 2008
RTC Survey Preliminary Results

15. Health Care & Social Services
Respondents were asked to identify up to three services that they currently need but are not receiving anywhere at this time.
The top services are:
Dental care & Treatment,
Assistance with insurance costs & premiums ,
Mental Health services
Legal services
And Housing Assistance.
When comparing the questions most needed services used in the past 6 months to needed services not received anywhere, both questions identified insurance & mental health as a needed service, however dental, legal and housing services are needed services unique to those services not received anywhere.
June 5, 2008
RTC Survey Preliminary Results

16. RTC Survey Results Barriers/Facilitators
The Results can be describe in two segments:
First, Service Utilization
And Second, Barriers & Facilitators to engagement in Medical Care
June 5, 2008
RTC Survey Preliminary Results

17. RTC Survey Preliminary Results
Prior to HIV Medical Care
When you were not getting medical care specifically for your HIV, were you getting any services at all?
Yes 32%(N=13)
No 68% (N=28)
20% (N=8) reported a non-HIV provider helped to link them to care
Consumers were asked if they received medical services non-specific to HIV when out of care
32% said YES
68% said NO
Although 32% were accessing other non-HIV services when out of care, only 20% reported that a provider of non-HIV services helped them to find their way into HIV Care
June 5, 2008
RTC Survey Preliminary Results

18. RTC Survey Preliminary Results
Barriers to Care
Respondents were asked to describe reasons why they were kept out of care prior to getting primary HIV medical care.
Respondents were asked to check all that apply, therefore responses do not add up to 100%.
The main reasons why PLWHA remained out of care are as follows:
Not wanting to think/deal with HIV/AIDS
Not able to keep track of appointments
Not wanting to take HIV medications
Feeling hopeless or overwhelmed
Feeling good- not sick enough to go to the doctor
June 5, 2008
RTC Survey Preliminary Results

19. RTC Survey Preliminary Results
Barriers to Care
Respondents were later asked to describe reasons why other people living with HIV are not in care.
Looking at the top five reasons, 4 of the 5 responses differed from the previous question. The main reasons were:
No insurance or gaps in insurance coverage
Not wanting to think about or deal with HIV/AIDS
Usage of alcohol or drugs
Lack of transportation to and from appointments
And other, bigger concerns are placed before HIV
June 5, 2008
RTC Survey Preliminary Results

20. Recommendations for Increasing Access to & Retention in Care
Actions or Changes necessary to ensure Access to HIV Medical Care
Response Count
Response Percent
Provide other services, support, or perks at the same places that provide HIV medical care. 22
56.4%
Give every person with HIV access to the best possible insurance coverage for medical, mental health and preventive health services. 19
48.7%
Provide transportation to HIV medical care appointments. 15
38.5%
Offer peer counseling/support services to clients who do not have their own support system to help them stay in HIV medical care. 12
30.8%
Provide escorts (for example, by outreach workers) to HIV medical care appointments. 9
23.1%
Train doctors and other healthcare providers to be more sensitive and helpful.
Make alcohol or drug treatment/rehab. services available to more people.
These are the Top seven recommendations that participants offered for ensuring that all PLWHA could be regularly engaged in HIV primary care.
The leading recommendations are to
provide other services at the same place where HIV medical care is received,
to provide comprehensive insurance coverage
To provide transportation
and to offer support services for those without their own support system to help them remain in care.
June 5, 2008
RTC Survey Preliminary Results

21. RTC Survey Preliminary Results
Facilitators to Care
Respondents were asked if there were other reasons why they came to the HIV clinic?
The top three reasons given include:
A change in personal attitude
Feeling ill or unwell
And Getting support or pressure from a partner, family member, close friend or other peer.
June 5, 2008
RTC Survey Preliminary Results

22. RTC Survey Preliminary Results
Facilitators to Care
June 5, 2008
RTC Survey Preliminary Results

23. RTC Survey Preliminary Results
Remaining in Care
Respondents were asked “Now that they have seen a doctor for HIV medical care, which specific services would keep them involved?”
The Other category refers to the following quotes:
“saving my life should definitely make it worth the time and effort”
“Caring & understanding from my primary doctor”
June 5, 2008
RTC Survey Preliminary Results

24. RTC Survey Preliminary Results
Implications
Service Utilization
Services used in past 6 months (HIV Primary Care, HIV Counseling, Treatment Adherence, Case Management and Prescriptions)
Most needed services used in past 6 months (HIV Primary Care, Insurance, Prescriptions, mental health, HIV Counseling )
Needed Services not received anywhere (Dental, Insurance, Mental Health, Legal and Housing)
The following summary of findings are preliminary and limited in generalizeability.
Several trends resulted in the preliminary analysis
Service Utilization
Services Used in past 6 months (HIV Primary Care, HIV Counseling, Treatment Adherence, Case Management and Prescriptions)
Most needed services used in past 6 months (HIV Primary Care, Insurance, Prescriptions, mental health, HIV Counseling )
Needed Services not received anywhere (Dental, Insurance, Mental Health, Legal and Housing)
June 5, 2008
RTC Survey Preliminary Results

25. RTC Survey Preliminary Results
Implications
Barriers/Facilitators to Care
Main reasons PLWHA remained out of care and common reasons why other people are not in HIV Medical Care differed almost completely.
The facilitators to remain in care and the reasons to seeking care were similar (like getting better, personal attitude, free from previous hindrances, illness/feeling sick).
Services keeping clients in care (HIV medical care, Case Management, Treatment Adherence, Dental and Mental Health)
June 5, 2008
RTC Survey Preliminary Results

26. RTC Survey Preliminary Results
Limitations
The survey has a small sample size and data collection is on-going.
The survey responses reflect services provided at various sites.
The survey sample includes only those returned to care.
The survey has a small sample size and data collection is on-going.
The survey responses reflect services provided at various sites.
The survey sample includes only those clients who have returned to primary care and those individuals (while they have something in common with individuals currently out of care) may not be able to speak to all the barriers or needs experienced by those who remain out of care.
June 5, 2008
RTC Survey Preliminary Results

27. RTC Survey Preliminary Results
Next Steps
Further data collection & analysis is necessary to better understand these observations of patterns in service utilization, service needs and barriers/facilitators for HIV primary care.
June 5, 2008
RTC Survey Preliminary Results

28. RTC Survey Preliminary Results
Acknowledgements
Survey participants
Bellevue Hospital
Cumberland Hospital
Jacobi Hospital
St. Vincent’s Hospital
Planning Council
Consumer Committee
PLWHA Advisory Group
Public Health Solutions, Inc.,
Samantha Garbers
Terry Rosenberg
Roberta Scheinmann
DOHMH-EPI
L. Perry Brothers
Samuel Jenness
Christopher Murrill
DOHMH-CTH
Monique Nicole Anthony
Mary Irvine
David Klotz
Fabienne Laraque
Anthony Santella
Danny Weglein
June 5, 2008
RTC Survey Preliminary Results