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Pediatric HIV

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

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Pediatric HIV

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  1. Pediatric HIV November 13, 2007

  2. 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

  3. 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

  4. 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)

  5. 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)

  6. 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

  7. 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% Hispanic 14.2% Caucasian <1% Asian Pacific/Islander or American Indian

  8. 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

  9. 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

  10. Nucleoside Reverse TranscriptaseInhibitor (nRTIs) Abacavir (Ziagen) (Didanosine (Videx) Emtricitabine (Emtriva) Lamivudine (Epivir) Stavudine (Zerit) Tenofovir (Viread) Zalcitabine (Hivid) Zidovudine (AZT) Non-Nucleoside Reverse TranscriptaseInhibitor (NNRTIs) Efavirenz (Sustiva) Nevirapine (Viramune) Delavirdine (Rescriptor) Protease inhibitors Amprenavir (Agenerase) Atazanavir (Reyataz) Darunavir (Prezista) Fosamprenavir (Lexiva) Indinavir (Crixivan) Lopinavir/ritonavir (Kaletra) Nelfinavir (Viracept) Ritonavir (Norvir) Saquinavir (Fortovase) Tipranavir (Aptivus) Fusion Inhibitor T20 (Fuzeon) HIV/AIDS ARV Medications

  11. 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

  12. Adherence, Disclosure, & Bereavement The Role of the Pediatric Psychologist

  13. 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%

  14. Adherence • Why problematic? • Higher non-adherence associated with increased viral load ( health) • Greater immunosuppression • Development of medication resistance

  15. 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

  16. Predictors of Adherence • Demographics • Available Social Support • Child and Parent Health Beliefs • Caregiver and Child Psychosocial Functioning

  17. 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)

  18. 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

  19. Why are Parents Reluctant to Tell their Child that He/She is HIV-Infected?

  20. 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;103:164 Lipson M, Hasting Ctr Rpt 1993;23:6

  21. 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;103:164 Lipson M, Hasting Ctr Rpt 1993;23:6

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

  23. 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

  24. 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;103:164 Lipson M, Hasting Ctr Rpt 1993;23:6

  25. Reasons to Disclose • 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

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

  27. 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

  28. Not “When,” but “How” (cont’d) • Let the child be the guide • Individualize the approach - tailor discussion according to child's: • Age • Cognitive development • Use tools and language for different developmental capacities: drawing, storytelling, play, drama • Level of maturity • Assess coping skills of the child • Health status • Terminally ill child may benefit from discussion about death rather than specific diagnosis

  29. 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

  30. 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

  31. 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?

  32. 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

  33. Clinical Psychology & the Pediatric HIV Clinic Issues seen/addressed in the clinic:

  34. Case Presentations

  35. 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

  36. 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

  37. 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

  38. 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

  39. 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!!!

  40. Questions? Comments? Thank you!

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