Family-Centered Family-Centered Case ManagementCase Management

An Essential Component in An Essential Component in Reducing Mother-to-Child HIV Reducing Mother-to-Child HIV

TransmissionTransmission

CitiMatCH Expedition 2004: Exploring the Boundaries of CitiMatCH Expedition 2004: Exploring the Boundaries of Urban MCHUrban MCH

Portland, September 11-14, 2004Portland, September 11-14, 2004

Mary E. Caffery, RN, MSN Mary E. Caffery, RN, MSN University of California, San DiegoUniversity of California, San Diego

Mother, Child & Adolescent HIV ProgramMother, Child & Adolescent HIV Program

Scope of the HIV Epidemic in the Scope of the HIV Epidemic in the U. S. U. S.

Among Women and ChildrenAmong Women and Children

AIDS in women has risen from 7% early in the epidemic to 24% of adult cases today

141,000 AIDS cases in women reported through June 2001

5-6,000 HIV positive women give birth annually

280–370 babies continue to be born each year with HIV infection

CDC, 2003

Mother to Child HIV TransmissionMother to Child HIV Transmission

Without antiretroviral therapy during pregnancy, mother-to-child transmission has ranged from 16%–25% in North America and Europe

21% transmission rate in the US in 1994

Pediatric AIDS Clinical Trial Group 076 defined role of zidovudine (ZDV) in reducing transmission

With use of ZDV, transmission was 11% in 1995

Risk of perinatal transmission can be <2%

highly active antiretroviral therapy (HAART)

elective cesarean section (C/S) as appropriate

formula feeding

San DiegoSan Diego

2.9 million 2.9 million residentsresidents

35,000 births/yr35,000 births/yr

16 labor and 16 labor and delivery sites delivery sites

12% of recent AIDS 12% of recent AIDS

cases were cases were womenwomen

40 HIV + pregnant 40 HIV + pregnant

women/yearwomen/year

California LegislationCalifornia Legislation Perinatal HIV Perinatal HIV

2003 Dutra Bill AB 16762003 Dutra Bill AB 1676All prenatal All prenatal

providers providers required to required to include HIV include HIV testing as testing as routine, with routine, with Hepatitis B screeningHepatitis B screening

Offer test at delivery Offer test at delivery Report results Report results

Poverty, language barriers, illiteracy, Poverty, language barriers, illiteracy, Substance abuse, mental illness, Substance abuse, mental illness,

domestic violencedomestic violenceInadequate transportation, unstable Inadequate transportation, unstable housing, housing, UnemployedUnemployedInadequate or lack of insuranceInadequate or lack of insurance

HIV infected women often face HIV infected women often face multiple challenges accessing multiple challenges accessing HIV services, prenatal care and HIV services, prenatal care and postpartum care: postpartum care:

BarriersBarriers

Urban health care systems are Urban health care systems are complex and often difficult to complex and often difficult to navigate, especially by clients who navigate, especially by clients who do not speak English, experience do not speak English, experience distrust with systems, are fearful, distrust with systems, are fearful, depressed or are stigmatized with depressed or are stigmatized with HIV or other issuesHIV or other issues

System BarriersSystem Barriers

Community prenatal care providers Community prenatal care providers lack expertise in the delivery of lack expertise in the delivery of services to HIV infected pregnant services to HIV infected pregnant women. women.

Traditional HIV case management Traditional HIV case management programs lack capacity to provide programs lack capacity to provide prenatal guidance, or manage prenatal guidance, or manage pregnancy related health and pregnancy related health and psychosocial issues. psychosocial issues.

GoalsGoalsTo promote optimal maternal and To promote optimal maternal and infant health through improved infant health through improved access to prenatal and HIV servicesaccess to prenatal and HIV services

Comprehensive and integrated case Comprehensive and integrated case management for HIV infected management for HIV infected pregnant women will improve pregnant women will improve utilization of prenatal care, HIV utilization of prenatal care, HIV care, interventions to reduce care, interventions to reduce perinatal HIV transmission and perinatal HIV transmission and infant diagnostic screening infant diagnostic screening

The Perinatal HIV Collaborative distributed The Perinatal HIV Collaborative distributed 10,000 HIV brochures in English and Spanish to 10,000 HIV brochures in English and Spanish to perinatal providers promoting testing and perinatal providers promoting testing and referral of HIV infected clients for care and case referral of HIV infected clients for care and case managementmanagement

Prenatal providers received training in HIV Prenatal providers received training in HIV testing for pregnant women and availability of testing for pregnant women and availability of servicesservices

Utilizing Title I and Title IV funding, a University Utilizing Title I and Title IV funding, a University -based maternal child HIV program -based maternal child HIV program implemented a family-centered HIV case implemented a family-centered HIV case management program to integrate HIV care and management program to integrate HIV care and prenatal care goalsprenatal care goals

AccomplishmentsAccomplishments

Highly skilled, bi-lingual clinical Highly skilled, bi-lingual clinical social workers with extensive social workers with extensive experience in women’s health experience in women’s health provided comprehensive social provided comprehensive social services including outreach, case services including outreach, case management, mental health management, mental health assessments, psychosocial assessments, psychosocial counseling, health education, partner counseling, health education, partner testing and postpartum follow-up for testing and postpartum follow-up for the mother and her infant the mother and her infant

Perinatal HIV Perinatal HIV Case Management ServicesCase Management Services

Goals of Case Management Goals of Case Management ServicesServices

Assistance with basic needs:Assistance with basic needs: housing, transportation, food, child care, housing, transportation, food, child care, Help obtaining health benefits, accessing Help obtaining health benefits, accessing prenatal careprenatal careCoordination of health and social services: Coordination of health and social services: Substance abuse, mental health dental, Substance abuse, mental health dental, legal, legal, peer-support, childbirth education, peer-support, childbirth education, parenting parenting classes employment/schoolclasses employment/schoolReferrals to health professionals community Referrals to health professionals community agencies agencies HIV education for clients, partners, families and HIV education for clients, partners, families and the communitythe community

Prenatal Case Management Prenatal Case Management ServicesServices

Initiated immediately at referral from Initiated immediately at referral from test site, obstetric office and continued test site, obstetric office and continued post-partumpost-partum

Case managers conduct extensive Case managers conduct extensive psychosocial assessment and developed psychosocial assessment and developed family centered treatment plansfamily centered treatment plans

Visits conducted at clinic and homeVisits conducted at clinic and homeAverage contact:Average contact: Bi-weekly face-to-faceBi-weekly face-to-face

Weekly phone callsWeekly phone calls

Case Management of Case Management of HIV Exposed InfantsHIV Exposed Infants

Discharge planning with ZDV prophylaxis for 6 weeks

HIV diagnostic testing (PCR) to establish or rule out HIV infection as early as possible

Linkages to an HIV specialist, primary care

Long-term followup

Provide anticapatory guidance and

social services for the family

Case Management Case Management of of

Postpartum WomenPostpartum Women

Primary and HIV specialty care OB/GYN and family planning services Mental health and substance abuse

treatment Coordination of care for the woman

& family Support services for the family

With intensive case With intensive case management:management:

Clients addressed behavioral goals to reduce Clients addressed behavioral goals to reduce risk for mother -to-child HIV transmission risk for mother -to-child HIV transmission Reduced substance use and increased use of Reduced substance use and increased use of recovery programsrecovery programsMore women and partners practiced safer More women and partners practiced safer sexual activitysexual activityMore women increased participation in More women increased participation in general prenatal wellness measures: general prenatal wellness measures:

improvements in nutritionimprovements in nutritionless smoking less smoking more exercisemore exercise

ResultsResults

100% of women 100% of women obtainedobtained

prenatal careprenatal care

92% of women were 92% of women were retained retained in care in care

90 % of women 90 % of women obtained obtained funding for prenatal funding for prenatal

services services

ResultsResults

92% of clients actively participated in 92% of clients actively participated in

health education health education

100% received substance abuse 100% received substance abuse education, adherence education, adherence counseling and safer sex educationcounseling and safer sex education

100% of women received mental health 100% of women received mental health assessments and referrals for supportive assessments and referrals for supportive servicesservices

ResultsResults100% of clients obtained 100% of clients obtained ante-partum antiretroviral ante-partum antiretroviral medication to prevent medication to prevent perinatal HIV transmission perinatal HIV transmission

96% of women received 96% of women received intra-partum antiretroviral intra-partum antiretroviral medicationmedication

100% of newborns received 100% of newborns received ZDV prophylaxisZDV prophylaxis

ResultsResults

100% of clients 100% of clients obtained at least obtained at least three lab tests to three lab tests to confirm infant confirm infant diagnosisdiagnosis

No cases of No cases of Mother-to-Child Mother-to-Child HIV HIV transmissiontransmission

Key PlayersKey PlayersCounty of San Diego Department of Health & Human Agency County of San Diego Department of Health & Human Agency (HHSA) (HHSA) Funded brochure, provided HIV education, provider Funded brochure, provided HIV education, provider education and public health nursing services, offered HIV testing, education and public health nursing services, offered HIV testing, and provided outreach and case management through Ryan White and provided outreach and case management through Ryan White Title I fundsTitle I funds

UCSD Mother, Child & Adolescent HIV ProgramUCSD Mother, Child & Adolescent HIV ProgramSub-contractor with County HHSA for Case Management Services Sub-contractor with County HHSA for Case Management Services for Women and Children. Provided expertise in HIV and for Women and Children. Provided expertise in HIV and reproductive health care, infant screening and medical care. reproductive health care, infant screening and medical care. Provided Ryan White Title IV funding for wraparound HIV services Provided Ryan White Title IV funding for wraparound HIV services for families. Retained social worker with MSW/MPH, extensive for families. Retained social worker with MSW/MPH, extensive experience in women’s health works with health care team to experience in women’s health works with health care team to integrate HIV/Prenatal care. Collected data and conducted integrate HIV/Prenatal care. Collected data and conducted evaluation to monitor outcomesevaluation to monitor outcomes

Community Based Agencies: Community Based Agencies: Southeast Abundant Resource Center: Community agency provides Southeast Abundant Resource Center: Community agency provides strollers, car seats, and baby supplies to families.strollers, car seats, and baby supplies to families.Christie’s Place: Community agency provides counseling, childcare, Christie’s Place: Community agency provides counseling, childcare, support groups, and personal hygiene products to families support groups, and personal hygiene products to families

Lessons LearnedLessons Learned

What works?What works?Collaboration works!Collaboration works!An integrated system of educating An integrated system of educating providers and consumers increased providers and consumers increased testing and referrals for caretesting and referrals for care

Focused efforts on the elimination of Focused efforts on the elimination of perinatal HIV transmission are perinatal HIV transmission are necessary especially in communities necessary especially in communities that do not have high HIV that do not have high HIV seroprevalenceseroprevalence. .

Lessons LearnedLessons Learned Integration and creative use of funding Integration and creative use of funding

stretched limited resourcesstretched limited resources

The group delegated the tasks to the most The group delegated the tasks to the most logical providers: MCH Division) distributed logical providers: MCH Division) distributed the brochures and the Division of Community the brochures and the Division of Community Epidemiology, as a subcontractor with the Epidemiology, as a subcontractor with the State/CDC perinatal HIV initiative conducted State/CDC perinatal HIV initiative conducted provider training provider training

The HHSA Office of AIDS Coordination funded The HHSA Office of AIDS Coordination funded case management, and the University HIV case management, and the University HIV program provided case management and co-program provided case management and co-located HIVlocated HIV, reproductive health and , reproductive health and pediatric follow-uppediatric follow-up

ChallengesChallenges

What doesn’t work?What doesn’t work?

Inadequate funding. More funding is Inadequate funding. More funding is needed to fully implement this community needed to fully implement this community wide approachwide approach

What would we do differently: What would we do differently:

This program would have been even more This program would have been even more effective if we had obtained additional effective if we had obtained additional funding to permit smaller case funding to permit smaller case management caseloads management caseloads

Overcoming BarriersOvercoming BarriersGreatest barrierGreatest barrier: : Lack of adequate attention on HIV and women Lack of adequate attention on HIV and women results in limited resources for outreach, care, results in limited resources for outreach, care, and case managementand case management

How are barriers being overcome?How are barriers being overcome?Continuing efforts to educate communityContinuing efforts to educate community

Collaboration with the AIDS Education and Training Collaboration with the AIDS Education and Training Center to train more providers and Regional Perinatal Center to train more providers and Regional Perinatal System to promote HIV testing and care during System to promote HIV testing and care during pregnancy pregnancy

Private funding has been secured for social marketing Private funding has been secured for social marketing and distribution of brochuresand distribution of brochures

More funding is being sought to expand case More funding is being sought to expand case management programmanagement program

What is the take home What is the take home message from this message from this

promising practice? promising practice? When a community collaboration is When a community collaboration is committed to reducing mother to child HIV committed to reducing mother to child HIV transmission, they can organize resources transmission, they can organize resources and activities to inform the community, and activities to inform the community, educate the health care system, and educate the health care system, and provide the case management, which provide the case management, which effectively links the pregnant woman, and effectively links the pregnant woman, and her family to the specialized care that will her family to the specialized care that will promote maternal/child health and reduce promote maternal/child health and reduce the spread of HIV the spread of HIV

ReferencesReferences

Public Health Service Task Force. Recommendations for Use of Public Health Service Task Force. Recommendations for Use of Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Antiretroviral Drugs in Pregnant HIV-1-Infected Women for Maternal Health and Interventions to Reduce Perinatal HIV-1 Maternal Health and Interventions to Reduce Perinatal HIV-1 Transmission in the United States, June 23, 2004, Transmission in the United States, June 23, 2004, http://aidsinfo.nih.gov/guidelines/perinatalhttp://aidsinfo.nih.gov/guidelines/perinatal

Revised Guidelines for HIV Counseling, Testing, and Referral and Revised Guidelines for HIV Counseling, Testing, and Referral and Revised Recommendations for HIV Screening of Pregnant Revised Recommendations for HIV Screening of Pregnant Women, MMWR, November 9, 2001/ Vol 50/ RR-19. Women, MMWR, November 9, 2001/ Vol 50/ RR-19. http://aidsinfo.nih.gov/guidelineshttp://aidsinfo.nih.gov/guidelines

National Pediatric and Family HIV Resource Center. Follow-up care National Pediatric and Family HIV Resource Center. Follow-up care for infants born to mothers with HIV infection. Newark, NJ: for infants born to mothers with HIV infection. Newark, NJ: University of Medicine and Dentistry of New Jersey; 2001University of Medicine and Dentistry of New Jersey; 2001

New York State Department of Health AIDS Institute. Pediatric and New York State Department of Health AIDS Institute. Pediatric and Adolescent HIV Guidelines. In: Adolescent HIV Guidelines. In: Criteria for the Medical Care of Criteria for the Medical Care of Children and Adolescents with HIV Infection.Children and Adolescents with HIV Infection. http://www.hivguidelines.org/public_html/center/clinical-guidelihttp://www.hivguidelines.org/public_html/center/clinical-guidelinesnes

Internet-based library of materials on mother and child HIV Internet-based library of materials on mother and child HIV infection can be found at infection can be found at http://http://WomenChildrenHIV.orgWomenChildrenHIV.org

Contact InformationContact Information

Mary E. Caffery, RN, MSN, Mary E. Caffery, RN, MSN,

UCSD Mother, Child & Adolescent HIV ProgramUCSD Mother, Child & Adolescent HIV Program

150 W. Washington St., #100150 W. Washington St., #100

San Diego, CA 92103San Diego, CA 92103

619-543-8080619-543-8080

mcaffery@ucsd.edumcaffery@ucsd.edu