Pediatric HIV

November 13, 2007

What is HIV?• Human Immunodeficiency Virus: A single-

stranded retrovirus that attacks the human immune system. Specifically a lentivirus, which is a type of retrovirus. Means: Slow virus– Uses CD4+ “helper T-cells” to replicate itself– Destroys T-cells– Compromises immune functioning– Increases risk of opportunistic infection

HIV/AIDS Classification

• The CDC definition of AIDS includes all HIV-infected individuals with CD4 counts of < 200 cells/µL as well as those with certain HIV-related conditions and symptoms

• The WHO system classifies HIV disease on the basis of clinical manifestations that can be recognized and treated by clinicians in diverse settings

Prevalence of HIV/AIDS

HIV/AIDS Impact (2005)Worldwide:

• 39.5 million people with HIV/AIDS

– 38.0 million adults

– 2.2 million children younger than 15 years living with HIV/AIDS

• In 2005, HIV/AIDS-associated illnesses caused 3.1 million deaths

(Center for Disease Control; CDC)

Prevalence of HIV/AIDS

Worldwide Continued:• This includes an estimated 570,000 children

younger than 15 years• Approximately 15.0 million children

younger than 15 years have been orphaned worldwide due to the premature deaths of HIV-infected parents

World Health Organization (WHO), National Institutes of Mental Health (NIMH)

Pediatric HIV

• 1982 – 1st acknowledged case of HIV in children

• Modes of transmission– Vertical (mother to child)

• Pregnancy, delivery, breast feeding

– Horizontal (through bodily fluids)• Unprotected sex, drug use, blood transfusion

Impact of HIV on children• From 1992-2004: 9,443 children are estimated to have

been diagnosed with HIV in the U.S.• 92.9% resulted from perinatal transmission • In 2004, an estimated 3,927 children were living with

HIV/AIDS, of whom: 63% African American

21.6% Hispanic14.2% Caucasian<1% Asian Pacific/Islander or American Indian

Treatment Evolution for HIV/AIDS

• Medical Treatment Evolution

– Monotherapy in early 1990s

– Dual agent approach by mid 1990’s

– Combination antiretroviral therapy (ART), also called highly active antiretroviral therapy (HAART), since late 1990s: 3 or more agents

Highly Active Anti-Retroviral Therapy

• HAART• Often involves a complex medical regimen• Has produced dramatic & significant

improvement in prognosis for HIV infection • But has also emphasized the importance of:

• Adherence • Medication Interactions

HIV/AIDS ARV Medications• Nucleoside Reverse Transcriptase

Inhibitor (nRTIs)Abacavir (Ziagen)(Didanosine (Videx)Emtricitabine (Emtriva)Lamivudine (Epivir)Stavudine (Zerit)Tenofovir (Viread)Zalcitabine (Hivid)Zidovudine (AZT)

• Non-Nucleoside Reverse Transcriptase Inhibitor (NNRTIs)

Efavirenz (Sustiva)Nevirapine (Viramune)Delavirdine (Rescriptor)

• Protease inhibitorsAmprenavir (Agenerase)Atazanavir (Reyataz)Darunavir (Prezista)Fosamprenavir (Lexiva)Indinavir (Crixivan)Lopinavir/ritonavir (Kaletra)Nelfinavir (Viracept)Ritonavir (Norvir)Saquinavir (Fortovase)Tipranavir (Aptivus)

• Fusion InhibitorT20 (Fuzeon)

HIV/AIDS: A Challenging Patient Population

• High degree of stigma

• Lower Socio-Economic Status– Most needs– Fewest resources– Increased risk of violence– Increased “chaos” in daily lives

• Affecting adherence to ART

• Not showing for appointments

Adherence, Disclosure, & Bereavement

The Role of the Pediatric Psychologist

Adherence

• Wide variability in adherence rates– Watson & Farley (1999)

• 52% of children under 12 at least 75% adherent – Feingold et al. (2000)

• 54% of children reported “good” adherence– Boni et al. (2000)

• 24% missed at least one dose in past 3 days• 44% missed at least one dose since last clinic visit

– Temple et al. (2001)• Pill counts & pharmacy refills: 19-95% adherence

– Van Dyke et al. (2002)• 68% to 84%

Adherence

• Why problematic?– Higher non-adherence associated with

increased viral load ( health)– Greater immunosuppression– Development of medication resistance

Adherence

• Critical to suppress viral load:

Adherence of 95% to drug regimen: 81% success rate

Adherence of 90-95% to drug regimen: 64% success rate

Adherence of 80-90% to drug regimen: 50% success rate

Adherence of 70-80% to drug regimen: 24% success rate

Adherence of <70% to drug regimen: 6% success rate

Predictors of Adherence

• Demographics

• Available Social Support

• Child and Parent Health Beliefs

• Caregiver and Child Psychosocial Functioning

Forms of Disclosure

• Disclosure to self– A child receiving information about their illness

• Preschoolers: 0% of children with HIV vs. 100% of children with cancer were told of their diagnosis (Hardy et al., 1994)

• 17-66% of children have received full or partial disclosure (Instone, 2000, Mialky et al., 2001)

• Disclosure took place 2-8 years after diagnosis (Instone, 2000)

Forms of Disclosure

• Disclosure of others– Receiving information about a parent’s illness

• May involve disclosure of additional info: IV drug use, infidelity, adoption

• 30-57% of children whose mothers are infected have been informed of mothers’ diagnosis (Murphy et al., 2001; Simoni et al., 2000)

• Disclosure to others– Immediate family, other family & friends, school

officials

Why are Parents Reluctant to Tell their Child that He/She is HIV-

Infected?

Reasons Parents are Reluctant

• Fear of impact of disclosure on child’s psychological status and emotional health– Reduce child’s will to live– Leads to depression in child

• Fear of inadvertent disclosure to others by child– Child cannot keep secrets

• Protecting child from social rejection and stigma• Guilt about transmission

– Association with sexual taboos

AAP, Pediatrics 1999;103:164Lipson M, Hasting Ctr Rpt 1993;23:6

Reasons Parents are Reluctant (cont’d)

• Difficulty coping with their own illness or illness of other loved ones

• Established coping strategies within families– Traditional silence around illness and disease– Limited communication within families– Denial as coping strategy

• Belief that child will not understand• Children as hope for future

– Avoid thinking of HIV keeps fatality at bay

• Other

AAP, Pediatrics 1999;103:164Lipson M, Hasting Ctr Rpt 1993;23:6

What are Reasons to Disclose a Child’s HIV Status?

Reasons to Disclose• Undisclosed children may

– Develop fantasies about their illness– Feel isolated from sources of support– Learn HIV status inadvertently

• Children often want and ask to know what is wrong– May already know diagnosis but are keeping the secret/

waiting for the parent to tell• With other chronic and fatal illnesses children who

know their status have– Higher self-esteem– Lower rates of depression– Lower rates of parental depression

Reasons to Disclose (con’t)

• Recognition of Autonomy– Children achieve mastery over their lives as

they age• Ongoing and evolving process of involvement with

their illness and it’s consequences

AAP, Pediatrics 1999;103:164Lipson M, Hasting Ctr Rpt 1993;23:6

• There is general consensus among experienced pediatric HIV providers that children should be informed of their diagnosis.

• Primarily US and European experience

• Emerging experience in Africa and other high prevalence settings

– Accelerated by the introduction of ARV treatment

Reasons to Disclose

Imagine your child was HIV+. At what age would you tell them?

Not “When,” but “How”

• Disclosure is more than revealing HIV status• Entails an ongoing discussion of health and

health-related activities– Parents/caregivers should be encouraged to begin and

continue a dialogue about health issues with their child beginning at an early age

• Simple explanation of nature of illness for youngest children • Disclosure about nature and consequences for older children

– When to use the words “HIV/AIDS” will vary with the needs of the child and family

Not “When,” but “How” (cont’d)• Let the child be the guide• Individualize the approach - tailor discussion

according to child's:1. Age2. Cognitive development

– Use tools and language for different developmental capacities: drawing, storytelling, play, drama

3. Level of maturity– Assess coping skills of the child

4. Health status– Terminally ill child may benefit from discussion about death

rather than specific diagnosis

Bereavement

• Children orphaned by HIV/AIDS– North America: 300,000– Worldwide: 15 million

• Anticipatory loss– Witnessing progressive mental and physical

deterioration of a loved one– Confusing and unexpected manifestations– May withdraw from patient

Bereavement

• Survivor guilt– Families may experience multiple losses– May not have time to process death before

another occurs– Parent guilt over transmission– Child guilt over survival

Bereavement

• Disruption of the family structure– “Children suffer more from the loss of parental

support than from the death experience itself” (Wolfelt, 1983)

– Disruption of parent/child attachment– Issue of child guardianship

Other relatives? Foster care?

Orphanages? Other?

Clinical Psychology & the Pediatric HIV Clinic

• Our role in the Pediatric HIV clinic...– Provide brief intervention and assessment of

children and families seen in the clinic– Provide referrals as needed– Serve as a liaison between pt and medical team– Screen for patients in need of psychological

treatment/intervention & provide services

Clinical Psychology & the Pediatric HIV Clinic

Issues seen/addressed in the clinic:

• Poor adherence • Domestic Violence

• Bereavement • Substance abuse

• Disclosure • Coping with illness

• Safe sexual practices • Family Conflict

• PTSD • Transitioning to the US

• Sexual assault • Depression/Anxiety

• Behavior management • Suicidal ideation/attempts

Case Presentations

Case #1: Dating & Romance

• 13 year old African-American male• Interested in becoming sexually active• No understanding of threat or need for

precautions• All sexual knowledge acquired from soap

operas or late night cable TV shows• Legal guardian refuses to discuss sex with

pt

Case #2: Bereavement

• 15 year old African American female

• Experienced loss of mother 1 year ago

• Relocated to live with aunt

• Experiencing high levels of guilt

• Hiding mysterious scars on forearms

Case #3: Accidental Disclosure

• 15 y.o. Hispanic female

• Acquired HIV through blood transfusion in infancy

• Boyfriend’s mother found out.

• Called police and disclosed to them.

• Called school officials.

• Resulted in significant distress/angst

Summary

• Severe worldwide impact on children

• Currently, there is no cure

• Highly stigmatized and feared, often misunderstood, chronic illness

• Affects a large proportion of ethnic minorities and low SES populations

Summary

• In addition to coping with a life-threatening illness and a complicated medical regimen:

Death & Bereavement Illness Disclosure

Medication Resistance Safe sex

Stigma/Bias Unstable life/family

Being a kid/teen!!!

Questions? Comments?

Thank you!