1. in+care Campaign Meet the Author May 30, 2013

2. Ground Rules for Webinar Participation
Actively participate and write your questions into the chat area during the presentation(s)
Do not put us on hold
Mute your line if you are not speaking (press *6, to unmute your line press #6)
Slides and other resources are available on our website at incareCampaign.org
All webinars are being recorded

3. Welcome & Introductions
Michael Hager, MPH MA
NQC Manager,
in+care Campaign Manager
New York, NY
Tim Minniear, MD
Research Associate
Infectious Diseases Department
St. Jude Children’s Research Hospital
Memphis, TN
In the chat room, Enter your: 1. name, 2. agency, 3. city/state, and 4. professional role at agency

4. Agenda Welcome & Introductions, 5min
Delayed Entry Into and Failure to Remain In Care Among HIV-Infected Adolescents, 30min
Background
Population and Methods
Results
Conclusions
Translating Research into Practice
Updates & Reminders, 5min
Q & A Session, 20min

5. Delayed Entry into and Failure to Remain in HIV Care Among HIV-Infected Adolescents
TD Minniear, AH Gaur, A Thridandapani, C Sinnock, EA Tolley, and PM Flynn. AIDS Research and Human Retroviruses. January 2013, 29(1): doi: /aid

6. Disclosures
I have no conflicts of interest to disclose.

7. BACKGROUND

8. Four Components of Engagement
Linkage
Retention
Learn of HIV
Positive Status
Enter Health
Care Services
Utilize HIV
Care Services
Adhere to
Medical
Instructions
Cheever. CID 2007
Horstmann et al. CID 2010

9. The HIV/AIDS Epidemic in the USA
1.2 Million People
Living with HIV
25% Unaware
of Diagnosis
Includes 20-30,000 adolescents
~ 26,000 new infections annually
900,000
Aware of
Diagnosis
33% Not Linked
into Care
600,000
Linked to Care
33% Fall out of Care
400,000
Actively Engaged
Del Rico et al. CROI 2001, Marks et al. AIDS 2006
Hall et al. JAMA 2008, Campsmith et al. JAIDS 2010

10. The HIV/AIDS Epidemic in the USA
600,000 People Living with HIV Not Yet Engaged in Care
200,000 People Living with HIV Inadequately Engaged
Take Home Point: 2/3rds of All People Living with HIV
in the United States Are NOT Adequately Engaged in Care

11. Primary Study Objectives
Identify factors associated with delaying entry into care (DEC) after diagnosis of HIV infection.
Identify factors associated with falling to remain in care (FRC) after initial engagement.

12. POPULATION & METHODS

13. Population & Methods Adolescents (13-21 years of age)
Infected via High-Risk Behavior
Diagnosed between 1996 and 2010
Exclusions:
Diagnosed during pregnancy
Transferred in from another clinic
Large, urban comprehensive HIV clinic
Memphis, Tennessee, USA
650,000 people
64% Minority (61% African-American, 3% Hispanic)
21% live below the poverty level

14. Definition of Outcomes
Delayed Entry into HIV Care
Lag >60 days from diagnosis to first kept appointment at the adolescent HIV clinic
Centers for Disease Control & Prevention’s Strategic Plan
Standard of care for outreach at our institution
Failing to Remain in HIV Care
Not returning to clinic ≥6 months and missing at least 1 scheduled visit
After engaging in care for at least 1 year (making 1 visit in each quarter)

15. Definition of Outcomes
Failing to Remain in HIV Care
Not returning to clinic ≥6 months and missing at least 1 scheduled visit S NS S
OUT
3 Months
3 Months
3 Months
3 Months S NS NS S IN
3 Months 1 1 1 S S IN
6 Months
3 Months
3 Months
S: Show; NS: No Show

16. Descriptive statistics Univariate analysis
Statistical Analysis
Descriptive statistics
Univariate analysis
Student’s t-test, Wilcoxon rank sum, chi-square as appropriate
Multivariate log-linear regression
Analyses performed with SAS (Cary, North Carolina, USA)

17. Statistical Analysis Multivariable Model
Analyzed each outcome separately
Included all factors with significance <0.15
Forced gender into the FRC model in order to adjust for the greater likelihood of a female having custody of a child
Estimated adjusted relative risks (rather than odds ratios) using a log-linear regression and assuming a Poisson distribution (GENMOD)

18. RESULTS

19. Case Assignment

20. No correlation between DEC & FRC
38% (76/202) delayed entry into care
30% (53/178) failed to remain engaged
 coefficient = (p=0.93)

21. Baseline Characteristics Delayed Entry into Care (N = 202)
Delayed Entry
(n = 76)
Prompt Entry
(n = 126)
P value
Race, Black
71 (93%)
121 (96%)
0.41
Self-Identified Sexual Orientation
Male, bisexual
Male, heterosexual
Male, homosexual
Female, heterosexual
7 ( 9%)
10 (13%)
29 (38%)
30 (39%)
6 ( 5%)
22 (17%)
52 (41%)
46 (37%)
0.52
Baseline Age (years)
Mean (sd)
18.6 (1.5)
18.4 (1.8)
0.43
Clinical Stage A B C
62 (82%)
9 (12%)
5 (6.6%)
107 (85%)
8 (6.4%)
11 (8.7%)
0.36
Distance from Clinic (miles)
Median (IQR)
7.7 ( )
9.5 ( )
0.45

22. Factors Associated with Delaying Entry into HIV Care
Prompt Entry (n = 126)
Delayed Entry (n = 76)
Unadjusted RR
(95%-CI)
Adjusted RRa
Unstable Residence
30 (39%)
29 (23%)
1.6 (1.1–2.2)
1.5 (1.0–2.1)
No Supervising Adult
31 (41%)
36 (29%)
1.4 (1.0–2.0)
1.2 (0.9–1.8)
Education
High School Drop Out
High School Student
High School Graduate
College Student
33 (43%)
13 (17%)
15 (20%)
59 (47%)
34 (27%)
25 (20%)
8 ( 6%)
0.6 (0.4–0.8)
0.4 (0.2–0.7)
0.6 (0.3–0.9)
Reference
0.4 (0.3–0.7)
0.5 (0.3–0.9)
Residing within 5 Miles of the HIV Clinic
23 (30%)
19 (15%)
1.7 (1.2–2.4)
1.7 (1.2–2.5)
a Relative risk was adjusted for unstable residence, living alone, education, and distance from clinic.

23. Baseline Characteristics Failed to Remain in Care (N = 177)
Failed to Remain
(n = 52)
Remained
(n = 125)
P value
Race, Black
50 (96%)
118 (94%)
0.63
Self-Identified Sexual Orientation
Male, bisexual
Male, heterosexual
Male, homosexual
Female, heterosexual
2 ( 4%)
12 (23%)
18 (35%)
20 (38%)
8 ( 6%)
17 (14%)
52 (42%)
48 (38%)
0.41
Baseline Age (years)
Mean (sd)
18.6 (2)
18.4 (1.6)
Clinical Stage A B C
44 (85%)
5 (9%)
3 (6%)
100 (80%)
12 (10%)
13 (10%)
0.59
Distance from Clinic (miles)
Median (IQR)
8.9 ( )
9.2 ( )
0.98

24. HIV Disease Characteristics Failed to Remain in Care (N = 177)
Failed to Remain
(n = 52)
Remained
(n = 125)
P value
Baseline CD4
441 (240)
431 (237)
0.80
Most Recent CD4
549 (266)
595 (274)
0.31
Most Recent CD4%
28 (8.9)
30 (11)
0.34
Change in CD4
109 (210)
164 (304)
0.23
Baseline HIV Log Viral Load
9.3 (2.6)
9.8 (2.6)
0.28
Most Recent HIV Log Viral Load
7.1 (3.3)
5.5 (3.6)
0.006
Reduction in HIV Log Viral Load
2.4 (3.5)
4.4 (4.4)
0.004
Values Presented as Mean (sd)

25. Factors Associated with Falling out of HIV Care (N = 177)
Failed to Remain (n = 52)
Remained
(n = 125)
Unadjusted RR
(95%-CI)
Adjusted RRa (95%-CI)
Insurance
No Insurance
Public
Private
23 (44%)
25 (48%)
4 (16%)
28 (22%)
76 (61%)
21 (17%)
2.8 (1.1–7.3)
1.5 (0.6–4.0)
Reference
2.8 (1.1–6.9)
1.2 (0.5–3.2)
Custody of a Child
11 (21%)
11 (8.8%)
1.9 (1.2–3.1)
1.8 (1.0–3.1)
Education
High School Drop Out
High School Student
High School Graduate
College Student
29 (56%)
12 (23%)
9 (17%)
2 ( 4%)
53 (42%)
27 (22%)
18 (14%)
3.5 (0.9–13.6)
3.1 (0.8–12.4)
2.5 (0.6–10.5)
4.0 (1.1–15)
4.5 (1.2–17.5)
3.0 (0.8–12.0)
a Relative risk was adjusted for insurance status, custody of a child, gender, and education.

26. CONCLUSIONS

27. Delay does not predict falling out
Adolescents who delayed entering care did not necessarily later fall out of care.
The only predictor in common between delayed entry and failing to remain in care was education (in opposite directions).
However, each had at least one possible surrogate for poor socioeconomic status.

28. Free access and transportation do not guarantee attendance
Despite the close proximity to the HIV clinic and despite free, non-stigmatized transportation, adolescents and young adults living closest to the clinic were at greater risk for delaying entry into HIV care.

29. Free access and transportation do not guarantee attendance
Despite the fact that our clinic does never charges a patient and we help obtain Ryan White assistance for qualifying patients, not having insurance was associated with failing to remain in care.

30. Free access and transportation do not guarantee attendance
We did not have objective measures of socioeconomic status for our patients.
Both residing within 5 miles of the clinic and lack of insurance could be surrogates for low socioeconomic status.
Covering the costs of care and transportation is not sufficient to overcome the barriers intrinsic to living in a low socioeconomic strata.

31. The perplexing effect of education
Youth in college were more likely to delay entry into HIV care than youth with any lower level of education.
In contrast, once finally engaged, youth in college were more likely to remain engaged in HIV care.

32. The perplexing effect of education
One—and not the only—explanation for the flip in association is that the demands or lifestyle of attending college lead youth to procrastinate making contact with the HIV clinic.
Once at the clinic, they may better understand the risks of non-compliance or be more motivated to maintain their health.

33. TRANSLATING RESEARCH FINDINGS INTO PRACTICE

34. Devote resources to linking “high-risk” youth to HIV care
Lessons Learned
Devote resources to linking “high-risk” youth to HIV care
Meet the youth where they are (e.g. school health clinics)
Outreach to no shows sooner rather than later
Strong social work and outreach support are key to keeping youth engaged in care

35. Improving Linkage to Care
As part of Connect to Protect, we have expanded our outreach and follow-up of newly diagnosed youth to include not only the health department but also the city school system, several community and faith based organizations, and university health clinics.

36. Improving Retention
Initiated a home visit program for established patients to bring them back into care sooner.
Assisted in establishing community advisory boards.

37. Acknowledgements Infectious Diseases Patricia Flynn, MD
Aditya Gaur, MD
Biostatistics
Elisabeth Tolley, PhD
Data Managers
Wally Bitar
Anil Thridandipani
Psychology & Social Work
Patricia Garvie, PhD
Christine Sinnock
Melanie Copeland
Funding & Support
St. Jude Children’s Research Hospital & ALSAC

38. Questions?

39. Announcements

40. Upcoming Events and Deadlines
Upcoming Webinars:
Partners in+care | Spanish Language Webinar | June 24, pm ET
in+care Campaign | Latinos & Retention | June 25, pm ET
Partners in+care Webinar | Adolescents and Retention | To be Scheduled
Data Collection Submission Deadline: June 3, 2013
Improvement Update Submission Deadline: June 17, 2013
Upcoming Monthly Topics
June – Latinos and Retention
July – Patient Navigation
August – Migrants, Refugees and Retention
September – Women and Retention 40

41. Time for Questions and Answers

42. incare@NationalQualityCenter.org incareCampaign.org
Campaign Headquarters: National Quality Center (NQC) 90 Church Street, 13th floor
New York, NY Phone
incareCampaign.org
youtube.com/incareCampaign 42