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Pediatric HIV/AIDS Courtesy of: International Center for AIDS Care and Treatment Programs Columbia University Mailman School of Public Health Overview Learning Objectives: Overview and Challenges Describe the scope of the pediatric HIV/AIDS epidemic in Sub-Saharan Africa and Ethiopia List the special challenges in the care of children with HIV/AIDS Discuss ways to overcome these challenges 3 Historical Perspective of Pediatric HIV: Sub-Saharan Africa 1983-1985 the first cases of pediatric HIV were first observed in Rwanda, the Democratic Republic of Congo, and Uganda Mid 1980’s longitudinal cohort studies started in East Africa (Kigali, Kampala, Kinshasha, Nairobi) to study maternal to child transmission and the natural history of HIV-exposed and infected children In 1988 the first specialist clinic started in Uganda 4 Estimated Number of Children <15 Years Living with HIV/AIDS at the End of 2005 Western & Central Europe North America 11 000 6 200 [4 900 – 7 900] Eastern Europe & Central Asia 8 800 [7 100 – 13 000] East Asia [5 600 – 17 300] Caribbean 23 000 [12 000 – 49 000] Latin America 26 000 [21 000 – 43 000] 9 400 North Africa & Middle East 24 000 [7 100 – 82 000] Sub-Saharan Africa Sub-Saharan Africa million 2.31.9 million [1.7 –million] 2.3 million] [2..1-2.8 [3 300 – 27 000] South & South-East Asia 170 000 [95 000 – 320 000] Oceania 700 [< 2 500] Estimated Number of Children (<15 years) Newly Infected with HIV During 2005 Western & Central Europe North America < 100 < 100 Caribbean 6 100 [3 100 – 13 000] Latin America 6 800 [5 400 – 11 000] Eastern Europe & Central Asia 1 800 [1 200 – 3 700] North Africa & Middle East 9 100 [2 800 – 30 000] Sub-Saharan Africa 560 000 [500 000 – 650 000] East Asia 4 100 [1 500 – 11 000] South & South-East Asia 51 000 [30 000 – 95 000] Oceania < 300 [< 1 000] Children Born with HIV In 2003, there were an estimated 128,000 pregnancies among HIVinfected women in Ethiopia At least 35,000 infants were born with HIV 7 Pediatric HIV/AIDS in Ethiopia More than 122,00 children under the age of 15 are living with HIV/AIDS in Ethiopia 63,000 are in immediate need of ART Only 1200 are on ART ~1.9% Over 29,000 people receiving ART in Ethiopia, however only 4% are children 8 BARRIERS TO CARE Why is care for infants and children difficult? Technical barriers in low-resource settings Disease progression is especially rapid in children Marginal political/community commitment to a pediatric agenda 9 BARRIERS TO CARE: Technical Barriers Diagnostic challenges Identification, virologic testing of infants <18 months, stigma, consent, etc) Complexity of ART administration Procurement of pediatric formulations Weight-based dosing Pediatric adherence Infrastructure & human resource requirements PMTCT follow up Systems for chronic care (appointments, medical records, community outreach) Training 10 Success Stories Dramatic improvements in morbidity and mortality have been seen in high resource settings secondary to: Accessible pediatric health services Widespread use of OI prophylaxis (cotrimoxazole) Access to antiretroviral therapy Successful perinatal prevention Care and treatment is also feasible in resource limited settings 11 Response to ART among children in the MTCT-Plus Initiative Mean increase in CD4 of 431 cells/6 mo Mean increase in CD4% of 10.5% In age-stratified analysis, response was best in children in whom ART was initiated at < 12 mo of age 60.00 CD4+ percent (%) 50.00 40.00 30.00 20.00 10.00 0.00 -20 0 20 40 60 80 100 Time since ART initiation (weeks) 120 Abrams et al. IAS 2005, abstract # MoPe11.6C28 12 Pediatric Care and Treatment Maximize interventions for PMTCT Enhance care and treatment for HIV-infected and HIV-exposed infants Engage women and their families in comprehensive care and treatment 13 Pediatric Care and Treatment (2) Increase availability of infant diagnostics Enhance case finding and referral Ensure follow up and comprehensive care and treatment Increase availability of and access to pediatric ART 14 Care of the HIV-Exposed Infant Learning Objectives: Care of the HIV-Exposed Infant Understand the distinction between HIVexposed and HIV-infected infants Recognize the goals of care for HIV-exposed infants Understand routine care procedures for HIVexposed infants 16 Challenges to Care Disease Transmission: antepartum, intrapartum, or postpartum (through breast feeding) Testing: All exposed infants (infected and noninfected) will test antibody positive during the first few months of life Exclusion: While the child with HIV infection can often be identified during the first months of life, HIV infection often cannot be excluded until after 1 year of age, particularly in breast fed babies 17 Challenges to Care (2) Disease Progression: rapid progression in pediatric cases and often requires treatment before a positive diagnosis can be confirmed Opportunistic Infections: HIV-infected infants are susceptible PCP, TB, and bacterial infections that are associated with high rates of infant mortality 18 Clinical Objectives Close monitoring of HIV-exposed infants for rapid disease progression and failing health status Use of prophylaxis in HIV-exposed infants to prevent opportunistic infections Early identification and treatment of HIV-infected infants 19 Background: Pediatric HIV Disease Infancy and early childhood is a time of rapid HIV disease progression Most children die before a diagnosis of HIV is made Common causes of morbidity and mortality in children Growth failure Tuberculosis PCP HIV encephalopathy Bacterial infections/pneumonia 20 Components of Clinical Care for the HIV-Exposed Infant History (birth, interim history, and parental concerns) Physical exam Growth and nutrition evaluation Developmental assessment Cotrimoxazole preventative therapy Determination & evaluation of infection status Assessment and plan 21 Clinical Care: History Birth-Identify children at higher risk of transmission/infection and higher risk of rapid progression Parents should be given the opportunity to communicate anxieties and problems as they will be the first to recognize them At each visit ask: Has the child been ill? How is the child eating? Any new accomplishments? Has anyone in the household been diagnosed or developed symptoms of tuberculosis? Any new medications? 22 Clinical Care: Physical Exam Monitor growth rate: Infected infants generally grow more slowly than uninfected infants. Growth can be the most sensitive clinical indication of HIV infection in an infant/young child and needs to be monitored closely for all exposed infants Monitor disease progression: Infected infants have a high frequency of HIV related morbidities due to rapid disease progression. Example: fever, oral thrush, skin rashes, hepatomegaly, splenomegaly, lymphadenopathy, weakness, muscle wasting, encephalopathy, etc. 23 Clinical Care: Growth and Nutrition Growth Chart: What is it? Growth data collected from large numbers of children in a particular population. Normative data on weight, height and head circumference by age and sex Why use it? Easy and systematic way to follow changes in growth over time for an individual child Easy to plot measurements at regular intervals • Monthly for all infants • Quarterly for older HIV-infected children 24 Growth Chart/Curve Use WHO growth curves or CDC growth curves The choice of growth chart is less important than following the growth of an individual child along their own curve on a chart 25 WHO Growth Curves WHO growth curves are Age and gender specific Extend from birth to 5 years • • • • Weight for age: boys and girls Height/length for age: boys and girls Weight for height/length: boys and girls BMI for age: boys and girls Use WHO Growth Curves to monitor growth of boys and girls, birth to 5 years 26 WHO Child Growth Curves 27 CDC Growth Curves CDC growth curves are Age and gender specific Extend from birth to 20 years • • • • • Weight for age: boys and girls Height/length for age: boys and girls Head circumference for age: boys and girls Weight for height/length: boys and girls BMI for age: boys and girls Use CDC Growth Curves to monitor: Growth of boys and girls, > 6 years Head circumference for boys and girls < 3 years 28 How to Use and Interpret a Growth Curve Measure and weigh child using same methodology at each visit Use a GROWTH CURVE for weight, height, and head circumference plotted EVERY MONTH Using age and sex appropriate charts, plot measurement (weight, height, head circumference) on the vertical against age on the horizontal axis Compare growth point with previous points Assess growth percentile 29 Weight for Age The child weighs 6kg The child is in the 15th percentile of weight for age He is 4 months old 30 Head circumference is 38 cm Head circumference for age Age is 3 months 95 90 75 50 25 10 5 The head circumference is below the 5th percentile for age This child is microcephalic 31 Clinical Care: Growth and Nutrition Nutrition: Assess mode of feeding frequency (duration or ounces) adequacy of supply bowel habits, reported problems Infant feeding practices 32 Infant Feeding Practices Mixed feeding may increase the infant’s chance of becoming HIV infected during the period of breastfeeding For HIV infected mothers choosing to breastfeed, WHO recommends exclusive breastfeeding for 6 months 33 Breast Feeding Advantages Promotes closeness between mother and infant Protective maternal antibodies Does not depend on availability of formula or clean water Societal norm Exclusive breast feeding may not increase the risk of MTCT Does not impact maternal health status Disadvantages Risk of HIV transmission to the infant If maternal health is poor, maternal milk may not be complete in nutrients 34 Formula Feeding Advantages Decreased risk of PMTCT Baby can be fed by other family members Feeding from a bottle or cup requires less work for the infant Nutritionally complete (doesn’t depend on mother’s health) Disadvantages Costly and not readily available in many settings Not societal norm in many settings No maternal antibodies Need clean water, clean supplies Need supplies on hand when not at home 35 Summary: Infant Feeding Choosing to breast feed or formula feed is complex: Personal preference of woman/family Local community norms Availability of supplies (formula, water) Counseling should be provided re: risks and benefits Women should be supported in their decisions about feeding choices Infant feeding should be discussed at each visit for mother and child Assure accurate history of intake Assess problems and concerns 36 Clinical Care: Developmental Assessment Delayed/abnormal development or loss of milestones may be the first sign of HIV infection in infants that raise concerns Abnormal development can be caused by other factors Infants are at high risk for HIV encephalopathy 37 Clinical Care: Developmental Assessment (2) A developmental assessment that includes the following should be conducted at each visit: Cognitive, motor, language, and social skills Discuss the infant’s milestones Verify appropriate development for age Use a developmental check list or observe the infant during the examination 38 Clinical Care: Developmental Assessment (3) Developmental Checklist may include: 1 month: raises head, crawling movement, alerts to sound 2 months: head midline, lifts chest off table, smiles socially 4 months: rolls front to back, laughs 6 months: sits unsupported, babbles 9 months: pulls to stand, says “mama” 12 months: walks alone, two words 39 Clinical Care: Cotrimoxazole Preventive Therapy HIV infected infants are at high risk for acquiring pneumocystis jiroveci pneumonia (PCP), a rapidly progressive pneumonia Severe and rapidly progressive pneumonia Tachypnea Hypoxia Diffuse interstitial pneumonitis High risk of death Occurs early, often before child is identified as HIV-infected Peak incidence is between 3-6 months Diagnosis difficult and invasive measures are often necessary (tracheal aspirate, induced sputum, BAL) Risk can be reduced with routine use of cotrimoxazole 40 Clinical Care: Cotrimoxazole Preventive Therapy (2) The most common OI in children in the US was PCP with the peak incidence is at 3-6 months of life Can also occur in older children with severe immune compromise Introduction of routine prophylaxis for all HIVexposed, coupled with effective perinatal prevention resulted in a drastic reduction in PCP in the US 41 Diagnosis of PCP in HIV-Infected Children with Respiratory Disease 60 % PCP 50 40 30 20 10 0 Capetown Bangkok Soweto Lusaka 42 Clinical Care: Cotrimoxazole Preventive Therapy (3) Given to all HIV-exposed and infected infants 112 months PCP prophylaxis for HIV-exposed infants Until the child is no longer breast-feeding and is determined to be uninfected or After two negative virologic tests, with one ≥ 4 months, in clinically well, exclusively formula-fed infants 43 CPT Dosing Recommendations Trimethoprim/sulfamethoxazole CTX/SMZ, Cotrimoxazole, Septrim®, Bactrim® weight in kilograms 8mg/ml suspension single-strength tablet (daily dose in milliliters) (80 mg TMP/400 mg SMZ) 3 – 4.9 kg 2 ml daily 5 – 6.9 kg 3 ml daily 7 – 9.9 kg 4 ml daily ½ single-strength tab daily 10 – 11.9 kg 5 ml daily ½ single-strength tab daily 12 – 14.9 kg 7 ml daily 1 single-strength tab daily 15 – 16.9 kg 8 ml daily 1 single-strength tab daily 17 – 19.9 kg 9 ml daily 1 single-strength tab daily 20 – 24.9 kg 11 ml daily 1 single-strength tab daily 25 – 29.9 kg 14 ml daily 2 single-strength tabs* daily 30 – 34.9 kg 17 ml daily 2 single-strength tabs* daily 35 – 40 kg 20 ml daily 2 single-strength tabs* daily44 *or one double strength tab Clinical Care: Immunizations Immunize infants early before there is damage to the immune system Routine immunizations per local guidelines Do not give BCG to any symptomatic infant 45 Clinical Care: Determining Infection Status Priority to determine infected babies who need care and treatment rather than confirm the absence of disease All HIV exposed infants should have virologic testing early, between 6-12 weeks of age Interpretation should be done in the context of the clinical presentation of the infant Antibody test is used in children >12 months of age If virologic tests are not available, WHO recommends presumptive clinical diagnosis of severe HIV in infants <18 months of age Breastfed infants with initial negative virologic tests should continue to be evaluated for clinical evidence of HIV infection 46 Follow-up Schedule for the HIV-exposed Infant Basic principles: Early identification of infants who are sick or failing to thrive is critical Careful and frequent clinical monitoring is required Systematic follow up is vital • Appointment systems • Medical records • Family education and support 47 Follow-up Schedule for the HIV-exposed Infant Visit Schedule Monthly visits for the first 6 months, then every three months until HIV infection status determined 4-6 weeks 3 months 5 months 6 months 2 months 4 months 9 months 15 months 12 months 18 months Virologic test HIV antibody testing 12 months Follow-up schedule can be modified per local and national guidelines. 48 Clinical Care: Assessment and Plan What is the child’s HIV status? Does the child have any new problems? Does the child require any laboratory studies? Has the child received proper vaccinations? Medications? OI Prophylaxis? When should the child return to clinic? 49 Case Study: Yared Yared is a 3 month-old male who is brought in for his monthly check up Baby is breastfeeding at night, but is fed porridge during the day by Grandma, who does not know of mom’s status Lately the baby has been feeding poorly. He has had diarrhea for the past two days Mom notes that she thinks he isn’t growing as well Yared receives cotrimoxazole, but sometimes he misses a dose when Grandma is caring for him, since she does not know that he takes this 50 Case Study: Yared (2) Yared’s physical exam is significant for Bilateral cervical and axillary nodes Notable cough Diarrhea x2 during the exam Depressed developmental stage His growth has slowed The last time Yared was seen in the clinic, the PCR machine was broken so he has not had any virologic testing done 51 52 Case Study: Yared (3) Is there evidence of HIV infection? Are there other problems or concerns? What else should be done at this visit? 53 Case Study: Yared (4) Poor growth, adenopathy and diarrhea Findings consistent with HIV infection Cough probably URI He is at risk for development of PCP Situation complicated by feeding change Need to assess family situation 54 Case Study: Yared (5) Review cotrimoxazole medication and importance of adherence Labs: FBC, DNA-PCR, CXR Stool sample Complete nutritional assessment Evaluation of cough including history of TB exposure Psychosocial support, including adherence and nutritional support for mother 55 Case Study: Yared (6) The chest X-ray is normal Results of the FBC will not be ready until tomorrow Mother sees the nutritionist and the counselor before leaving the clinic 56 Case Study: Yared (7) Yared returns in 2 weeks for his results HIV DNA PCR is positive Yared is diagnosed with HIV infection Send a repeat DNA PCR for confirmation Yared is referred for staging and initiation of ART at the local hospital 57 Family Health and Well Being Families benefit from open and honest exchange of information about the child Use simple language to explain the difference between exposure to HIV and HIV infection Make sure to repeat the information at each visit All family members (infected and non-infected) can benefit from psychosocial support 58 Role of the Multi-Disciplinary Team Ongoing communication between the members of the MDT is crucial for supporting the family and caring for the exposed infant Each member of the team will have a different perspective and different pieces of information about the family and infant Engaging parents in care and treatment can help to decrease the burden of disease, prevent orphaning, and keep families healthy 59 Summary HIV exposed infants are at risk for HIV infection and rapidly progressive disease. It is important for providers to: Identify the infected children early Manage and prevent opportunistic infections Maintain and support healthy families Exposed infants need to be monitored closely: History Physical exam Nutrition and growth Developmental assessment OI prophylaxis Determination & evaluation of infection status Assessment and plan for follow up All members of the MDT are crucial in supporting the family and providing comprehensive care for the child 60 Infant Diagnosis Learning Objectives Outline key concepts in diagnosing HIV in infants Review algorithms for diagnosing HIV Discuss virologic and antibody tests Understand clinical diagnosis Review roles of the parent and multidisciplinary team 62 Complexities of Infant Diagnosis Difficult to diagnose Routine antibody tests cannot be used Specialized virologic tests are necessary HIV infection is difficult to exclude Infants who breast feed continue to be at risk for acquiring HIV infection 63 HIV Antibody Testing HIV antibody is not used for diagnosis during the first 12 months of life Maternal HIV antibody (IgG) is transferred across the placenta during pregnancy All infants born to HIV+ mothers will test HIV antibody positive HIV antibody fades during first 9 - 18 months of life in uninfected infants 64 Specialized Virologic Tests Specialized virologic tests must be used HIV DNA PCR HIV RNA PCR p24 Antigen Viral Culture Two positive virologic tests = HIV infection One positive virologic test = Presumed HIV infection 65 Specialized Virologic Tests (2) HIV DNA & RNA PCR Sensitivity (true negatives) increases during first weeks of life Sensitivity can vary with assay and laboratory; assay should be appropriate for viral subtype Theoretically, sensitivity and specificity (true positives) may vary in populations of infants receiving perinatal prevention regimens; no supportive data has been published 66 Specialized Virologic Testing Breast-fed infants Remain at risk for acquiring HIV infection Most are infected in utero, intrapartum and early postpartum (by 6 weeks of age) A negative virologic test cannot reliably exclude HIV Must always be tested again 6-12 weeks after cessation of breast feeding 67 Diagnosing HIV Infection in Children <18 months: When Virologic Tests are Available HIV-exposed infants should have virologic testing early, between 6-8 weeks of age DNA PCR & RNA PCR are most widely available tests for infant diagnosis Interpretation of virologic test results should ALWAYS be done in the context of the clinical presentation of the infant Virologic testing is used primarily to identify the infected child, not to exclude infection in the exposed child 68 Early Virologic Testing Positive Results Indicate HIV infection A repeat virologic test should be done to confirm Treatment should not be withheld awaiting confirmation if the infant is symptomatic and/or rapidly progressing Negative Results 69 Early Virologic Testing (2) Asymptomatic infant Early negative virologic test generally implies that the child is not infected Most children remain at risk for acquiring HIV through breastfeeding Testing with the HIV antibody test should be done at ≥12 months or >6-12 weeks after the cessation of breastfeeding (whichever comes later) Symptomatic infant Repeat virologic testing Use CD4 and clinical judgment. Consider starting treatment depending on disease progression 70 Diagnosing HIV Infection in Children <18 months: Virologic Tests are not Available A presumptive diagnosis of HIV infection must be made based on clinical findings Good clinical reasoning can identify children at high risk for HIV disease & rapid progression The purpose of making a presumptive diagnosis is to initiate ART in the sick child Infants with severe manifestations of HIV infection should not be denied treatment because their diagnosis cannot be confirmed 71 Presumptive Diagnosis of Severe HIV Disease in Children <18 months HIV antibody positive and Diagnosis of Stage 4 or AIDS-indicator condition(s) OR Symptomatic with ≥ 2 of the following: • Oral thrush • Severe pneumonia • Severe sepsis Supporting factors Recent maternal death Advanced HIV disease in the mother CD4% < 20% in infant The diagnosis should be confirmed with HIV antibody when the child reaches 18 months 72 Clinical Judgment Clinical judgment should guide: Interpretation of lab results • Are results valid? Do the results make sense given the child’s health? Is the lab trustworthy? Could there be a specimen mix-up? When to repeat PCR testing • Are the child’s symptoms consistent with HIV infection? The decision to consider a child HIV-infected The decision to initiate ART 73 Discordance Clinical findings may suggest the diagnosis of HIV infection even when virologic tests are negative Use CD4 to assess immunologic status • Low CD4 is consistent with HIV diagnosis Other diseases can have similar manifestations and should be ruled out if possible Repeat virologic testing should be considered HIV antibody testing should be repeated at >18 months to confirm infection status 74 Diagnosing a Child Who Presents at 9-18 Months of Age Asymptomatic child Screen with HIV antibody If positive, virologic testing is indicated If negative, no virologic testing is necessary • If breast feeding, repeat antibody testing >6-12 weeks after cessation of breast feeding Symptomatic child Screen with virologic testing 75 Diagnosing HIV in the Child >18 Months HIV antibody should be used to diagnose HIV infection in children >18 months of age Children >18 months with positive antibody test have HIV infection A positive antibody test should be confirmed by duplicate testing A negative antibody test in children >18 months excludes HIV infection Except in cases of continued breast feeding. Antibody should be repeated 6-12 weeks post cessation of breast feeding 76 Multidisciplinary Team Provide ongoing education, support, and counseling to parent Identify problems and issues EARLY Form a bridge between parent and medical provider Provide adherence support for both mother and infant Introduce concept of infant diagnostic testing as part of PMTCT program 77 Multidisciplinary Team (2) Support the decision to have early infant diagnostic testing Review results of virologic test Explain implications Explore parental understanding Explore parental concerns Review infant feeding decisions Emphasize need for ongoing care and treatment as determined by results 78 Role of the Parent Parent needs to understand: That infant diagnosis is an ongoing process The importance of early testing, frequent monitoring, and adherence to care Often the first to notice signs and symptoms Often has multiple complex roles and needs, including self-care, caretaker role for other family members, feelings about transmission of HIV to the infant Parent needs understanding and support 79 Case Study: Meseret 6 week old infant, Meseret, is brought to clinic for her first post-partum visit Mom delivered in a village outside of the city where her mother and sister still live She just returned home with Meseret and her 4 year old son Mom was enrolled in a PMTCT program during pregnancy What would you like to know about the baby and his family? 80 Case Study: Meseret (2) Meseret was born at home without problems Mother doesn’t know birth weight, but brought Meseret to health station at 4 days of age, weighing 2.9 kg Mom took her SD-NVP, but the baby didn’t receive any medication. Mom didn’t tell anyone at home about her status Breast feeding primarily but left the baby with her sisters on two occasions. During that time Meseret was fed water and maybe some milk 81 Case Study: Meseret (3) Dad is away working. Mom has not disclosed her HIV status to him He comes home 1X/month and gives her money but she must work in the fields and sells produce to have enough money She uses the general water tap in the neighborhood No running water in the house What will you do next? What is usually done at a baby’s first visit? 82 Case Study: Meseret (4)—Pertinent Physical Exam Physical examination is remarkable for fairly extensive oral thrush, and diffuse lymphadenopathy The baby looks a little scrawny and seems irritable What is your assessment of the child? What could be causing Meseret’s poor growth? 83 Case Study: Meseret (5)—Pertinent Physical Exam Growth Chart Infant Girl 95% 90% 75% 50% 25% 10% 5% Birth Weight- 2.9 kg Weight at 6 wks3.4 kg 84 Case Study: Clinical Questions Physical examination is remarkable for fairly extensive oral thrush, and diffuse lymphadenopathy The baby looks a little scrawny and seems irritable 85 Case Study: Meseret (6) Mom reports that the baby has not been feeding well for several days You watch the child feed but she tires quickly and falls asleep. Mom says that this is what has been happening over the last several days She also reports occasional watery stools She says that she had a ‘TB’ test at ANC and it was negative Her mother (the child’s grandmother) seemed to be coughing and had lost some weight, but she didn’t seem to be too sick 86 Case Study: Meseret (7) You send blood for HIV DNA PCR You work with mom around enhancing feeding and arrange for the family to receive food packages You prescribe nystatin for the oral thrush The child also begins cotrimoxazole prophylaxis Mom is instructed to come back in one week to check the baby again Mom does not make the appointment the following week. What will the team do to address this missed visit? 87 Case Study: Meseret (8)—MDT The case is discussed at the weekly multidisciplinary meeting and it is decided that the mom should be contacted immediately. Her cell number is no longer connected so the decision is made to make a home visit A peer educator and a counselor travel to the listed address. Mom is not at home but they find the baby with a neighbor. Meseret seems sick and has loud breathing What should they do? 88 Case Study: Meseret (9) Mom is due to return in a short time. She usually comes home late morning to feed the baby When she arrives you escort her to the clinic with the baby Meseret is brought in to the nurse who weighs her. Breathing seems fine now, but the child weighs the same as last visit 89 Meseret’s Growth Chart 95% 90% 75% 50% 25% 10% 5% Birth Weight- 2.5 kg Weight at 1 mo.3.4 kg Weight at 2 mos.- 3.4 kg 90 Case Study: Meseret (10)—Pertinent Physical Exam On examination, the thrush is still visible and lymph nodes are somewhat larger Infant diagnostic tests are not yet back. You ask the nurse to call the lab and they have no record of the sample What would you do now? 91 Case Study: Meseret (11) You decide that the child does not require hospitalization but ask mom to return in two days You order: CXR CD4 count Repeat virologic testing Test Results: The CD4 is 1200, 13% DNA PCR results are not ready CXR is normal Does this child have HIV infection? 92 Case Study: Meseret (12) The team decides that the child most likely has HIV infection and requires treatment Thrush Failure to thrive ( WHO Stage III) Low CD4 (<25% for infant <11months of age) What will you tell the mother? What will you do to confirm the child’s infection status? 93 Case Study: Meseret (13) Meseret was continued on CTX, nystatin for thrush and started on ARVs Both initial and repeat DNA PCR results were positive when test results were finally available 94 Case Study: Tsegenet Mom brings her 10 week old baby, Tsegenet, for a return visit The baby has been receiving cotrimoxazole since 4 weeks of age She is breast feeding well and has not been sick An HIV test was sent at the previous visit and mom is anxious to know the results The team discussed this family last week during the multidisciplinary meeting 95 Case Study: Tsegenet (2) DNA-PCR results were positive The team talked about how to share the news with the parents What will you say to her mother when she comes to the clinic? 96 Case Study: Tsegenet (3) Tsegenet appears well with a normal physical examination Growth is plotted on the 25% percentile for weight, height and head circumference She smiles, makes good eye contact, and reaches out She is breast feeding and receiving additional foods and water from an aunt Mom works several days each week 97 Case Study: Tsegenet (4)—Growth Curve 98 Case Study: Tsegenet (5)—Clinical Questions Given the laboratory result and the clinical findings, do you think this child is HIV-infected? How will you manage the child? What will you tell the mother? 99 Case Study: Tsegenet (6) Mom returns with the baby in a month The repeat DNA PCR test is negative and the baby is still thriving What will you do? 100 Case Study: Tsegenet (7)—Clinical Question Which of the following actions would you consider? Repeat DNA-PCR testing CD4 Continue cotrimoxazole Monitor closely Rapid antibody screen at 12 months 101 Case Study: Tsegenet (8)—Case Conclusion The team was unsure about the lab tests, but decided to: Continue the CTX for now Schedule more frequent follow-up, at the same time as mom’s visits Work with the mom and aunt to wean early At 12 months Tsegenet tested HIV Ab negative 102 Key Points Infant diagnosis can be a complex and lengthy process Early virologic testing should be used to identify the infected infant at highest risk for disease progression Specialized virologic tests are used to diagnose HIV infection in a child <18 months Two positive virologic tests confirm HIV infection in an exposed infant The presence of HIV antibody in a child >18 months defines HIV infection 103 Key Points Clinical reasoning is critical to diagnosing infants with HIV Virologic tests may be unreliable or unavailable, making clinical evaluation important HIV can be diagnosed without a definitive virologic test in an ill child with clinical and immunological evidence of infection The diagnosis should be confirmed with virologic testing, response to treatment and/or antibody testing >18 months The multidisciplinary team has numerous critical roles in this process The parent or caretaker is the key player, and must be educated and supported on this logistically, emotionally, socially and medically complicated path 104 Pediatric Disclosure: Talking to Children about HIV Learning Objectives List important differences between adult disclosure and pediatric disclosure of HIV status Discuss advantages/disadvantages of disclosing/not disclosing HIV status to a child Discuss strategies to use during pediatric disclosure of HIV status 106 Disclosing to Children Must consider: Needs, feelings, beliefs of the child and needs, feelings, beliefs of the parent(s)/caretaker(s) • Pediatric health care providers traditionally advocate for the needs of the child • Multidisciplinary teams advocate for the needs of the family Current and evolving developmental and cognitive stage of the child Existing status of family dynamics and communication 107 Reasons Parents are Reluctant to Disclose Fear of impact of disclosure on child’s psychological status and emotional health Reduce child’s will to live Depression in child Fear of inadvertent disclosure to others by child Child won’t 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;23:6 108 Reasons Parents are Reluctant to Disclose (2) 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 death away AAP, Pediatrics 1999;103:164 Lipson M, Hasting Ctr Rpt 1993;23:6 109 Do You Believe Children Should Be Informed of Their HIV Status? If yes, why? If no, why not? 110 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 or 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 Recognition of child’s autonomy Children achieve mastery over their lives as they age AAP, Pediatrics 1999;103:164 Lipson M, Hasting Ctr Rpt 1993;23:6 111 How to Disclose Disclosure is more than revealing HIV status Disclosure is an ongoing process 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 112 How to Disclose (2) 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 113 Assisting Families to Get Ready for Disclosure Preparation Education Planning Follow-Up 114 Assisting Families to Get Ready for Disclosure (2) Preparation Why disclose now? What do you want to communicate to your child? What will be the most difficult questions for you to answer when your child knows his/her HIV status? Acknowledge difficulty of disclosure and affirm motivation to begin process Education Tell parents how to explain HIV transmission to child Anticipate questions and responses from child Discuss expectations for what will happen after disclosure 115 Assisting Families to Get Ready for Disclosure (3) Planning When and where? Who will be there? What will you say? Plans after disclosure? Follow-up Functioning within the school and family Monitor medical treatment adherence Disclosure to peers and others Support groups, counseling 116 Why Counsel Children? Helps children cope with emotions and challenges they experience when they discover they have HIV/AIDS Helps children with HIV to make choices and decisions that will prolong their life and improve their quality of life 117 Why Counsel Children? (2) Establish a helping relationship Help children tell their story Listen attentively Give correct and appropriate information Help them make informed decisions Help them recognize and build on their strengths Help them develop a positive attitude towards life 118 Counseling Children Model open discussion during visits Address questions to the child Ask child if he/she has questions Discuss importance of dialogue and disclosure early and often Routine part of pediatric HIV care Use good counseling skills 119 Disclosure and Multidisciplinary Teams Members of multidisciplinary teams may find themselves in conflict around disclosure to children Some team members may advocate for pediatric disclosure Others, particularly those working with adult caregivers, may resist disclosure Multidisciplinary teams may hold/mirror conflicts occurring in families Needs of the child vs. needs of the adult Different opinions of different adults Important to retain family-focus and consider decisions in best interest of the child and the family 120 Case Study: Desta Desta is an 11 year old girl. Her mother died five years ago and she has since lived with her aunt Amsale, uncle Yared and maternal grandmother Bogalech Amsale was enrolled in the ART clinic during her pregnancy last year. Desta and Yared both tested HIV positive and were enrolled as well Desta was eligible for ARV treatment based on a history of recurrent varicella zoster, chronic thrush and low CD4% She began ZDV + 3TC + NVP but developed a Grade III rash. NVP was changed to Kaletra (LPV/r) She has done well on treatment 121 Case Study: Desta (2) Resisting Medications Grandmother Bogalech brings Desta for her monthly visit. She reports that everything is fine When asked about missed doses Bogalech reports that Desta gets all of her medication. She reluctantly mentions that Desta is fighting with her about taking her medications What Do You Want to Ask Bogalech? 122 Assessing Incomplete Adherence Review current regimen Inquire about problems administering medications – obtain a descriptive assessment Review WHO, WHAT, WHEN, HOW 123 Case Study: Desta (3) Refuses Medications Bogalech states that Desta no longer wants to take her medications. She was a “good” girl in the past and took them without complaint though the orange pills always made her choke. Now she doesn’t want them any more Desta keeps asking why she has to take these pills. She wants to know when she will finish taking them 124 Case Study: Desta (4) When you ask Bogalech what Desta knows about her health she becomes quiet. You notice a few tears. She doesn’t want to discuss Desta’s problem. She says that the child is taking medications now and will be fine What should you do? 125 Case Study: Desta (5) Refuses Medications Desta and Bogalech return home. You discuss the case at next team meeting and decide to approach aunt Amsale when she comes for her monthly visit When asked about Desta’s medication adherence Amsale notes that she has been resisting taking her medications Amsale feels that Desta should know about her illness. She and grandmother Bogalech have fought about it several times. They both take care of Desta, but Amsale also has her babies to raise. She doesn’t want to fight with her own mother Why do you think Grandmother Bogalech doesn’t want to discuss HIV with Desta? What can the team do to help Desta and her family? 126 Case Study: Desta (6) Disclosure Process - Beginning a Dialogue Meet with family members alone, then together Begin a discussion/dialogue about Desta’s health and behaviors Address Bogalech’s concerns about Desta Work with family members to enhance communication Offer counseling for Desta, other family members Follow general counseling guidelines Continue to monitor adherence closely 127 Case Study: Desta (7) Beginning a Dialogue After several family meetings, Amsale takes the lead and starts to talk with Desta about her health. Bogalech doesn’t take part in the conversations, but doesn’t prevent them Amsale, who is also taking ART, begins to take her medicines with Desta. She talks about staying healthy and having strong blood. After several weeks Desta begins to ask questions and stops fighting about her medications. Amsale and Desta become pill buddies and complain to each other about the nasty blue pills 128 Case Study: Desta (8) Desta Continues to Ask More Questions Several months later Amsale brings Desta to her medical appointment. She tells the clinician that she thinks it is time to tell Desta more about her illness. Bogalech doesn’t want to take part but has agreed to let Amsale talk with Desta Amsale asks for help What would you do to assist Amsale and her family? 129 Case Study: Desta (9) Disclosure of HIV Status to Desta The team works with Amsale and Yared in preparation for meeting with Desta. Amsale asks that the nurse and physician help during the session How do you feel about talking with Desta? What will you say? 130 Case Study: Desta (10) Follow-up Care Amsale, Yared, the pediatrician, and the nurse meet with Desta to disclose her HIV status. The meeting is very emotional for all participants. Desta and Amsale choose to meet with the counselor on a weekly basis to continue talking about their concerns 131 Case Study: Henok Henok is 6 years old and he has a 3-year-old sister, Melke. The children’s parents have died, and both children now live with their maternal aunt Rahel and her family. Rahel is pregnant and she is being followed at the clinic During a recent visit Rahel reports that both Melke and Henok have been sick a lot. She requests that both Melke and Henok be tested for HIV/AIDS. She also reports that the children do not eat or sleep well What additional information do you want? How will you go about arranging for testing of the children? How will you explain the testing to the children? 132 Case Study: Henok(2) During his blood draw for HIV testing, Henok asks the nurse what happened to his mother and if something bad is going to happen to his sister and he. He seems very worried and frightened How will you respond to his questions? How will you help his aunt in her parenting of Henok and Melke? What should happen, if anything, while the family is awaiting test results? 133 Key Points Disclosure of HIV status to a child is guided by the needs of the child and their caregivers Disclosure should be part of an ongoing dialogue about health and treatment Disclosure should be guided by the age, developmental and emotional stages, and health status of the child Disclosure is difficult! 134 Key Points Disclosure for children Involve the child as well as one or more adults Consider: • Child’s age, developmental stage, feelings, health status • Caregiver’s beliefs and feelings • Family dynamics Disclosure for children should not be viewed as a one-time event but as an ongoing processes requiring a systematic approach and the varied skills of a multidisciplinary team 135 Care of HIV-Infected Infants and Children Learning Objectives Describe goals of care for HIV-infected infants and children Describe common clinical manifestations of HIV disease in children Describe appropriate use of the major components of routine care for HIV-infected infants & children Categorize disease stage Prescribe Cotrimoxazole Preventative Therapy Perform tuberculosis screening Evaluate ARV eligibility Schedule pediatric visits 137 Goals for Care of HIV-Infected Infants & Children Model of care Family-centered HIV primary care Multidisciplinary team Maximize health & prevent disease progression Prevent early death Prevent OI Maximize growth and development Reduce hospitalization rate Reduce frequency of intercurrent illnesses 138 HIV in Children HIV during infancy = primary infection Acquisition of HIV can occur in utero, intrapartum, postnatally (through breast feeding) Very high viral load: peak at 6-12 weeks of life Multiple factors influence rate of disease progression: Maternal advanced disease Maternal vital status Timing of transmission (peripartum vs. late) Genetic susceptibility Virus characteristics Likelihood of disease progression is associated with child’s CD4 count and HIV-1 RNA copy number 139 Clinical Manifestations of HIV/AIDS Clinical Infections Recurrent bacterial infections Account for about 20% of AIDS defining illnesses in infants and children Most are caused by encapsulated organisms such as S. pnuemoniae and Salmonella, others are Staphylococcus, enterococcus etc Most common serious infections are – pneumonia, bacteremia, sepsis and meningitis (account for more than 50% of infections in HIV infected children) Management Same as in non HIV- infected children Occasionally may require longer duration of treatment 141 Common Opportunistic Infections Opportunistic infections (OI): Generally occur with severe immune suppression Young children have primary infection rather than reactivation Lack of immunity leads to more severe course than in adults 142 Common OIs: Pneumocystis Pneumonia (PCP) Parasitic infection Pneumocystis jiroveci (formerly Pneumocystis carinii) Diffuse and severe pneumonia Characterized by gradual onset of hypoxia, fever, cough and respiratory distress Peak incidence is between the age of 3 – 6 months Hypoxia with normal CXR/or there may be diffuse alveolar disease with granular pattern Management Intravenous/oral trimethoprim (15 – 20 mg) sulfamethoxazole (75 – 100 mg)/24hrs every 6 hrs for a total of 21 days Adjunctive corticosteroids 2 mg/kg/24 hrs for 7 – 10 days then gradual tapering over 7 – 14 days Alternative if intolerant to TMP/SMX: Pentamidine Prophylaxis Lifelong after infection HIV-infected children dependent on clinical stage and/or immunologic suppression 143 Common OIs: Mycobacterium Avium Complex (MAC) May cause disseminated disease in children Symptoms are non specific: weight loss or failure to thrive, fever, abdominal pain, diarrhea, and lymphadenopathy Diagnosis can be made only by Isolation of MAC from blood, bone marrow or tissue Treatment in children Clarithromycin- 7.5 mg /kg/dose twice daily plus Ethambutol- 15mg /kg /day Prophylaxis (CD4% < 15) Clarithromycin 7.5 mg/kg twice daily 144 Common OIs: Candida Infections Oral candidiasis and diaper dermatitis are the most common in HIV infected children Three forms Atrophic candidiasis Chronic hyperplastic candidiasis Angular Cheilitis Dysphagia and poor oral intake, irritability indicates involvement of the esophagus Others: invasive disease, candidal dermatitis, onychomycosis Management Oropharyngeal: Fluconazole 3-6mg/kg daily for 7-14 days Esophageal disease: Fluconazole 6mg/kg on day one then 3-6mg/kg daily for minimum of 14-21 days 145 Common Viral Infections: Herpes simplex virus The most common cause of stomatitis in children 1 - 3 years of age Pain in the mouth, salivation, fetor oris, refusal to eat, high fever, vesicular lesion that rupture leaving shallow ulcers Typically symptoms subside with in a week but in HIV infected children it is prolonged, and extensive Dissemination to involve the skin and other organs Treatment: Acyclovir 146 Common Viral Infections Chickenpox May be prolonged and complicated by bacterial infection or visceral dissemination or pneumonitis Herpes Zoster Recurrent, atypical and chronic, and may need use of acyclovir Measles May occur despite immunization and may present without the typical rash CMV Retinitis, pneumonitis, esophagitis, gastritis with pyloric obstruction, hepatitis, encephalitis are reported 147 Common CNS Manifestations Occurs in 50 – 90% of perinatally infected children in developing countries Most common form is progressive encephalopathy Loss or plateau of developmental milestones Cognitive deterioration Impaired brain growth resulting in acquired microcephaly Apathy, spasticity, hyperreflexia and gait disturbances and loss of language and other motor skills CT shows cerebra atrophy in 85% of children Focal neurologic signs and seizure may occur with CNS lymphoma, toxoplasmosis, tuberculoma, stroke 148 Common Cardiovascular Manifestations Dilated cardiomyopathy and left ventricular hypertrophy are common With advanced disease high frequency of autonomic instability leads to rhythm abnormality Gallop rhythm, tachypnea, Hepatosplenomegaly indicates CHF Anticongestive therapy is effective 149 Common GI Manifestations Most frequent GI symptoms: persistent or recurrent diarrhea with malabsorption, abdominal pain, dysphagia and failure to thrive A variety of pathogens cause GI symptoms: Bacteria (salmonella, campylobacter, MAC) Protozoa (Giardia, cryptosporidium, Isosporia, microsporida) Viruses (CMV, HSV, Rotavirus) Fungi (Candida) MAC and protozoal infections are severe and protracted Other GI manifestations are Chronic liver inflammation with or without jaundice Pancreatitis with or without abdominal pain Chronic cholecystitis 150 Common Skin Manifestations: Bacterial skin infections Folliculitis, cellulitis, skin abscesses impetigo, furunculosis and paronychia may occur with increasing frequency Staphylococcus aureus is the cause in most bacterial skin infections Good hand washing is needed to prevent spread of lesion Treatment: Antibiotics Impetigo Source: Common Skin Diseases In Africa, Colette van Hees & Ben Haafs 151 Common Skin Manifestations: Seborrheic Dermatitis/eczema Extensive and an early non specific sign of HIV infection in infants Thick yellow scales on the scalp but thin scales over the rest of the body High recurrence Treatment Seborrheic dermatitis of the axilla Topical steroids Source: Common Skin Diseases In Africa, Colette van Hees & Ben Haafs 152 Common Skin Manifestations: Pruritic Papular eruptions (PPE) Chronic papular lesion Etiology unknown Evenly distributed over the trunk and extremities A marker of worsening immunosuppression and may be stigmatizing Risk of secondary bacterial infection Treatment: Antihistamines and steroids Source: Common Skin Diseases In Africa, Colette van Hees & Ben153 Haafs Common Skin Manifestations: Scabies Pruritic papular eruptions In infants and children tend to involve the sole and the palms Norwegian Scabies: generalized scaling and enlarged crusted plaques Treatment: Benzylbenzoate lotion 25% 154 Common Hematologic Manifestations Unexplained Anemia: 20– 70% of HIV-infected children (Hb < 8g/dL) Causes: chronic infection, poor nutrition, autoimmune factors, virus associated conditions (Parvovirus B19) and drugs Leukopenia: in up to 1/3 of infected children (ANC < 1000/mm3) Thrombocytopenia: in 10– 20% of patients (< 50,00/mm3) 155 Common Malignant Diseases Generally less frequent compared to adults and represent less than 2% of AIDS defining illnesses in children Most frequent: Non Hodgkins lymphoma Primary CNS lymphoma Leiomyosarcoma Epstein-Barr virus is associated with most cases of lymphomas and all cases of leiomyosarcoma Kaposi sarcoma due to human herpes virus 8 occurs less frequently than in the adults 156 Routine Care for the HIVInfected Child Components of Routine Care for the HIV-Infected Child 1. 2. 3. 4. 5. 6. 7. 8. 9. History (past, interim, parental concerns) Nutrition evaluation Developmental assessment Physical examination Laboratory evaluation Staging/classification Opportunistic infections ARV eligibility Assessment & plan 158 1. History Why is history important? Develop clinical profile for older children entering the program Identify changes in health status since last visit Identify changes in home setting that may affect child’s health PAST HISTORY Newly enrolled older children • HIV-related illnesses • Hospitalizations • Medications (ARV, OI prophylaxis) 159 1. History (2) Interim History New health problems Signs & symptoms checklist HIV-related illness Current Medications antiTB medications Medications for OI prophylaxis e.g. Cotrimoxazole Other alternative medications (herbal preparations) 160 2. Nutritional Evaluation At every visit: Nutrition and feeding history – exclusive breastfeeding or mixed feeding? Weigh, measure and examine child Use growth curves to monitor growth pattern Any child who is not thriving needs extensive nutritional history 161 Failure-to-Thrive The failure to sustain a normal velocity of weight and/or height growth during the first 3 years of life – downward crossing of 2 percentiles over time Can be quantified using growth curves May be indication: Of HIV disease in exposed infant For ARV treatment in infected infant/child Of ARV treatment failure in child on therapy 162 3. Developmental Assessment At every visit Ask about the infant’s development Simple questions should focus on four critical developmental domains; cognitive, motor, language, and social This can be done through observation during the physical exam or asking the parent The developmental checklist may be helpful Delayed acquisition of developmental milestones or loss of previously acquired skills can be the first sign of HIV encephalopathy 163 3.Developmental Assessment (cont’d) Developmental Checklist 1 month: raises head, crawling movement, alerts to sound 2 months: head midline, lifts chest off table, smiles socially 4 months: rolls front to back, laughs 6 months: sits unsupported, babbles 9 months: pulls to stand, says “mama” 12 months: walks alone, two words 164 4. Physical Examination At every visit Perform careful physical examination Initial exam should be comprehensive including examination of all organ systems Identify any HIV related physical findings; thrush, lymphadenopathy, organomegaly, dermatitis,encepatholpathy etc Subsequent exams can be guided by findings on the symptom/sign checklist 165 5. Laboratory Evaluation Which Laboratory Tests Need To Be Done? Complete Blood Count CXR if clinically indicated CD4 Count Pregnancy test for sexually active adolescent females CD4 number and percent • When infant is determined to be HIV-infected • Upon enrollment for older children • Every six months there after 166 The Use of CD4 Count in Children CD4 counts and percentages in healthy infants at birth are very high at birth and during the first year of life and then decline The absolute CD4 count during the first year of life is more than 3 times that of adults Because of these differences, adult values do not apply until age 6 CD4 count of 500 is considered okay for a 7 year old but is severe suppression for a 6 month old CD4% is a more stable value than absolute number, so percentage is preferred in children under 5 years of age 167 Calculating the CD4 Percentage Calculate the CD4 percentage for a 13 month old HIV-infected infant CD4 absolute is 640mm3 WBC is 10,000mm3 N-38%, L 48%, M-12%, E-2% Calculate the TLC = 10,000 x .48 = 4800 The CD4 percentage= 640 X 100 = 13% 4800 168 WHO Immunologic Categories Age related CD4 values Classification of HIVassociated immunodeficiency <11mo (%) 12-35mo (%) 36-59mo (%) 5 years (mm3) Not significant >35 >30 >25 >500 Mild 30-35 25-30 20-25 350-499 Advanced 25-30 20-25 15-20 200-349 Severe <25 <20 <15 <200 or <15% 169 6. Staging and Classification Clinical staging should be performed at every visit Why is clinical staging important? To assess disease severity To monitor disease progression Criteria for ARV therapy 170 Clinical Staging of Pediatric HIV/AIDS Old WHO clinical stages: Three stages Didn’t capture many disease manifestations Didn’t include measures of immunologic status New WHO clinical staging: Four clinical disease categories; asymptomatic, mild, advance and severe Expanded comprehensive list of associated conditions based on prognosis Standardized criteria for presumptive and definitive 171 diagnosis WHO Classification of HIV Associated Clinical Disease Clinical Classification WHO Clinical stage Asymptomatic 1 Mild 2 Advanced 3 Severe 4 172 WHO Staging for <15 Years Old Clinical Stage 1 (Asymptomatic) Asymptomatic PGL Clinical Stage 2 (Mild) Hepatosplenomeagly Papular pruritic eruptions, Extensive wart virus infection Extensive molluscum contagiousum Fungal nail infections, Recurrent oral ulcerations Linear gingival erythema (LGE) Angular cheilitis Parotid enlargement Herpes zoster Recurrent or Chronic URTI (otitis media, otorrhea, sinusitis) 173 WHO staging for <15 Years Old (2) Clinical Stage 3 (Advanced) Conditions where a presumptive diagnosis can be made on the basis of clinical signs or simple investigations: Moderate unexplained malnutrition not adequately responding to standard therapy Unexplained persistent diarrhea (14 days or more) Unexplained persistent fever (intermittent or constant for longer than one month) Oral Candidiasis (outside neonatal period), Oral hairy leucoplakia Acute necrotizing ulcerative gingivitis/periodontitis Pulmonary TB Severe recurrent bacterial pneumonia Conditions where confirmatory diagnostic testing is necessary: Unexplained anemia (<8mg/dl),and/or neutropenia (<500/mm3) and/or thrombocytopenia, (<50,000/mm3) for >1 month Chronic HIV associated lung disease including bronchiectasis Symptomatic lymphoid interstitial pneumonitis (LIP) 174 WHO staging for <15 Years Old (3) Clinical Stage 4 (Severe) Conditions where a presumptive diagnosis can be made on the basis of clinical signs or simple investigations: Unexplained severe wasting or severe malnutrition not adequately responding to standard therapy Pneumocystis pneumonia Recurrent severe bacterial infections (empyema, pyomyositis, bone or joint infection, meningitis, but excluding pneumonia) Chronic herpes simplex infection (orolabial or cutanoeus > 1 month, visceral of any duration) Kaposi’s sarcoma, esophageal candidiasis, CNS toxoplasmosis, HIV encephalopathy Conditions where confirmatory diagnostic test is necessary: CMV infection (retinitis or infection of organs other than liver, spleen or lymph nodes; onset at the age of 1 month or more) Extrapulmonary cryptococcosis including meningitis Any disseminated mycosis (e.g. extrapulmonary histoplasmmosis, coccidiomycosis, penicillosis) Cryptosporidiosis, isosporiasis Disseminated non-tuberculous mycobacteria infection Candida of the trachea, bronchi or lungs Acquired HIV associated rectal fistula, cerebral or B-cell lymphoma Progressive multifocal leucoencephalopathy (PML) HIV associated cardiomyopathy or HIV associated nephropathy 175 WHO Classification of HIV-associated Immunodeficiency in Infants and Children Immunological Classification <12 months (CD4 %) Not significant > 35% > 30% > 25% > 500 Mild 30-35% 25-30% 20-25% 350-499 Advanced 25-30% 20-25% 15-20% 200-349 Severe < 25% < 20% < 15% < 200 or 15% 12-35 36-59 months (CD4 months (CD4 %) %) > 5 years (CD4 cells/mm3) 176 Case 1: Henok Henok is 12 months old with HIV infection. He has had no major illnesses or hospitalizations He has bilateral cervical, inguinal and axillary adenopathy, persistent oral and genital candidiasis, and is being treated for his 4th episode of otitis media. His growth is at the 10th percentile What WHO stage is Henok? 177 7. Opportunistic Infections Occurs with severe immune suppression Young children have primary infection rather than reactivation as in adults Immature immune system of the infant leads to more fulminant course than in adults Prophylaxis prevents disease progression and morbidity and mortality! 178 PCP Pneumonia Parasitic infection Pneumocystis jiroveci (formerly Pneumocystis carinii) One of the most commonly occurring opportunistic infections in infants and young children with a very high mortality rate Without prophylaxis, 40% of infants and children with AIDS experience PCP Prophylactic cotrimoxazole is one of the most important interventions for HIV-exposed infants and HIV-infected infants and children 179 PCP Pneumonia Clinical presentation characterized by sudden onset of hypoxia, fever, cough and respiratory distress In some, sub-acute presentation Peak incidence occurs between the age of 3–6 months with highest mortality in children <1 year of age Patients may have hypoxia with normal CXR or there may be diffuse alveolar disease with granular pattern 180 Prophylaxis Regimens Cotrimoxazole suspension Recommended dosing is based on 4mg/kg of the trimethoprim portion once each day Use weight band chart for dosing Toxicities* include Rash Fever Bone marrow suppression (neutropenia) *infrequent in infants 181 Tuberculosis: Background Most common opportunistic infection among HIV-infected patients in Africa, SE Asia Leading cause of AIDS-related deaths worldwide: 1/3 of all AIDS-related deaths are due to TB Can be prevented by: Treatment of latent TB infection (preventive therapy) Use of antiretroviral therapy 182 Special Issues for Children High rates of co-infection (HIV and TB) Zambia: 69% hospitalized with clinical TB test HIV+ Cote d’Ivoire: 23.4% Johannesburg: 42% Higher risk of progression from latent to TB disease compared with adults Associated with severe complications Meningitis Miliary TB 183 Special Issues for Children (2) Difficult to diagnose Limited yield of diagnostic procedures: • Poor sputum production • Low yield of gastric aspiration • Sputum induction and bronchoscopy not routinely used Multiple varied clinical manifestations Overlap with other HIV disease manifestations BCG vaccination results in false positive Tuberculin Skin Testing (TST) Limited sensitivity of TST in HIV-infected children 184 TST Survey in Children, Botswana 80 70 60 50 40 % TST positive 30 20 10 0 0 mm 1-9mm 10-14mm >15mm TST Reaction Size (mm) MMWR 1997, 46(36);846 185 Impact of BCG Vaccination WHO estimates 79% of population vaccinated Given at birth or during newborn period Thought to prevent severe TB complications in young children, i.e. disseminated disease and meningitis Can result in reactive TST No reliable method to distinguish “true-positive” TST caused by M. tuberculosis infection from “falsepositive” TST caused by BCG vaccination 186 Tuberculosis Screening Targeted history at each evaluation Symptom checklist Inquire about household contacts with TB • Establish risk to infant/child • Make sure those with TB in the household are appropriately treated Tuberculin skin testing (TST) of Children with positive symptom screen or clinical findings consistent with TB Household contacts of adult with TB disease Annually for all children with HIV infection beginning at 1 year of age 187 TST Placement and Reading Intradermal placement of .1 ml 5TU PPD Read 2-3 days after placing test by trained worker or health care provider Feel for induration Color change without induration is not included in measurement Use a ruler or calipers Document exact size (mm) of reaction ≥ 5 mm induration considered positive in an HIVinfected child 188 Positive TST (>5mm) Exclude active TB as per local and national guidelines Symptom checklist and physical exam Chest X-ray when available For TB disease Follow local and national guidelines For LBTI INH (10-15mg/kg, maximum 300 mg) daily for 6 months Vitamin B6 generally not given to children unless: • Severe malnutrition • Breast feeding • AIDS • Pregnant adolescent 189 8. ARV Eligibility WHO Recommendations for Initiating ART in Infants and Children Children with WHO Stage 4 and most WHO stage 3 should initiate ART CD4 can be used to guide ART initiation for some Stage 3 diagnoses (TB, LIP) Children with WHO Stages 1 and 2 should only initiate ART if they have evidence of advanced immune suppression Children with severe immune suppression independent of WHO stage 190 9. Assessment & Plan Synthesize components of evaluation Diagnose and manage complications Order laboratory studies Refer for counseling/support groups Follow-up appointment 191 What is the Follow-up Schedule for the HIV-Infected Child? Ages 0-6 months 6-24 months Monthly Every 3 months >24 months Symptomatic Asymptomatic Every 3 months Receiving ARV Every 6 months Weekly for 8 weeks, monthly thereafter 192 Pediatric Antiretroviral Therapy Learning Objectives Describe WHO clinical and immunological criteria for ART initiation in infants and children Describe preparation of the family for ART Identify and manage ARV toxicities Recognize treatment failure 194 Children Are Not Small Adults Age-related differences between children & adults Body composition Renal excretion Liver metabolism Gastrointestinal function Drug metabolism in children varies with age and maturation leads to differences in: Drug distribution and clearance Drug dosing and drug toxicities • Pharmacokinetic (PK) data not consistently available in young children • Variations in PK (between and within individuals) frequently greater in children 195 Requirements Prior to ART Confirm HIV Diagnosis and Eligibility Laboratory confirmation as soon as possible WHO Clinical and Immunological Staging Criteria Identify and fully counsel caregivers Confirm availability of support services (family, social, inpatient care etc.) Ensure access to nutrition and prophylaxis Availability of consistent caregiver for administration/supervision – will vary with family structure Ability to keep follow-up appointments 196 WHO Criteria for ART Initiation in Infants and Children < 13 years Children with WHO Stage IV and most WHO stage III should initiate ART CD4 can be used to guide ART initiation for some stage III diagnoses (TB, LIP) Children with WHO Stages I and II should only initiate ART if they have evidence of advanced immune suppression Children with severe immune suppression independent of WHO stage 197 New WHO Criteria for Starting ART in Infants & Children WHO Pediatric Stage Availability of CD4 cell assay Age specific recommendation <18 months >18 months CD4 IV Treat All No CD4 CD4 III Treat All No CD4 Treat all except those with TB, LIP,OHL, thrombocytopenia, also take into account CD4 value Treat all CD4 CD4 guided No CD4 TLC -guided CD4 CD4 guided No CD4 Do not treat II I 198 WHO Age-Related CD4 Values for Starting ART in Infants & Children Age specific recommendations to initiate ARTb Immunological markera CD4% CD4 count <12mo 12-35mo 36-59mo >5 years 25 % 20% 15% 15% 1500cells/mm3 750 cells/mm3 350cells/mm3 200cells/mm3 2500cells/mm3 1500cells/mm3 To be used only in absence of CD4 assay: Total Lymphocyte count 4000cells/mm3 3000cells/mm3 199 WHO Criteria for Starting ART: Infant with Presumptive Diagnosis-Severe HIV Disease HIV antibody positive and Diagnosis of Stage IV OR Symptomatic with ≥ 2 of the following: • Oral thrush • Severe pneumonia • Severe sepsis Supporting factors Recent maternal death Advanced HIV disease in the mother CD4 <20% Laboratory confirmation should be sought as soon as possible depending on available resources 200 Eligibility of Children >13 years of age WHO stage 4 irrespective of CD4 cell count WHO stage 3 HIV disease and CD4 < 350 CD4 < 200 irrespective of WHO stage In situations of rapidly deteriorating health status and lack of virologic test availability, a presumptive diagnosis can be done A presumptive clinical diagnosis of severe HIV necessitates management of presenting acute illnesses and management of HIV including the initiation of ART 201 Preparing for ART Complex adherence challenges for children Requires collaboration of child, parent, and all secondary caretakers Family needs support around long-term therapy, changing regimens, and doses Issues of disclosure and multiple caretakers complicate complete adherence Ongoing support for evolving adherence needs as child develops with age Prepare family for adherence 202 Points of Caution Consider any medical contraindications to firstline regimens using Medical history Symptom checklist Physical examination Laboratory studies (renal function, liver function, and CBC, pregnancy test in sexually active females, and CXR if clinically indicated) 203 Medical Contraindications to ART Severe Anemia (Hb<6.9 gdl) Contraindication to AZT, replace with d4T Severe Neutropenia (ANC<250 mm3) AZT use requires close monitoring. Can substitute d4T if ANC falls Severe Renal Insufficiency (Creatinine > 3 times normal) Contraindication to ARV use. Patient not eligible for ART Severe Hepatic Insufficiency (LFTs > 5 times normal) Contraindication to NVP use. Use EFV in children older than 3, PI treatment suggested for small children History of prior ARV use Potential for ARV resistance. Consult for expert management Current use of rifampin containing TB regimen- Interactions with NVP. If CD4 is high, consider deferring ART or use ritonavir containing regimen for children under 3 and EFV containing regimen for children older than 3 204 First Line Regimens Preferred pediatric first line regimes: Children under the age of 3 AZT+3TC+NVP or d4T+3TC+NVP or ABC+3TC+NVP Children older than 3 years (>10kg) AZT+3TC+NVP/EFV d4T+3TC+NVP/EFV ABC+3TC+NVP/EFV or or Additional dual NRTI backbone include ABC+ AZT or ABC+d4T 205 Special Circumstances WHO recommends Triple NRTI (AZT+3TC+ABC or d4T + 3TC +ABC) as alternative option for initial therapy under certain circumstances: Infants and children < 3years receiving TB treatment where NVP or PI cannot be used because of interactions with rifampin Pregnant adolescent with CD4 cell > 250/mm3 in which both NVP and EFV are contraindicated and PI based regimes are not available 206 Dosing for Pediatric ARVs Dosing is weight dependent and must be adjusted for significant weight gain/loss Check weight and height at each visit and adjust dosage when necessary Failure to adjust for weight gain can lead to underdosage and development of resistance Failure to adjust for weight loss can lead to overdosing and toxicity Review dose changes and reasons for changes with family 207 ICAP Pediatric ARV Dosing Chart 208 Zidovudine (AZT) Formulation Syrup:10 mg/ml Capsules: 100 mg; 250mg Tablet: 300mg May be crushed and combined with food Light sensitive, needs to be stored in a glass jar Should not be used with d4T because of possible antagonism Monitor side effects and toxicity 209 Lamivudine (3TC) Formulation Oral solution: 10 mg/ml Tablet: 150 mg Generally well tolerated Store solution at room temperature Tablet can be mixed with water or food and taken immediately Use within one month of opening the bottle Monitor side effects and toxicity 210 Stavudine (d4T) Formulation Oral solution: 1mg/ml Capsules: 15mg, 20mg, 30 mg Solution must be refrigerated Capsules may be opened and mixed with small amount of food Should not be used with AZT because of possible antagonism Monitor side effects and toxicity 211 Abacavir (ABC) Formulation Oral solution: 20mg/ml Tablet: 300mg Can be given with food Tablet can be crushed and mixed with small amount of water or food and immediately ingested Monitor side effects and toxicity 212 Nevirapine (NVP) Formulation Oral solution: 10 mg/ml Tablet: 200 mg Can be given with food Store suspension at room temperature; must be shaken well NVP is initiated at a lower dose and increased in a stepwise fashion Monitor for side effects and toxicity Liver toxicity can occur but is less common than in adults, can be fatal Discontinue for grade 3 toxicity: substitution with efavirenz has been successful in adults, but little data is available for children 213 Efavirenz (EFV) Formulation Syrup: 30mg/ml (for children > 3 years) Capsules: 50mg, 100mg, 200 mg Not indicated for children under 3 years of age or less than 10 kg Capsules can be mixed with sweet foods or jam to disguise peppery taste Can be given with food but avoid high-fat meals which decrease absorption by 50% Best given at bedtime to reduce CNS side effects Monitor for side effects and toxicity Should not be prescribed for adolescent females who are at risk for becoming pregnant because of teratogenicity Rash is more frequent in children than adults but it is generally milder 214 Special Considerations in Prescribing First Line Regimens Never prescribe efavirenz to a child under the age of 3. Proper dosing has not been determined for any child <3yrs or <10kg Stavudine (d4T) liquid requires refrigeration. Families can be taught to open capsules but this may be complex. Zidovudine may be preferable In children who were previously exposed to NVP as a PMTCT regimen, NNRTI resistance may develop. While this resistance generally fades within the first year, this may impact the efficacy of the NNRTI-based regimen 215 How to Monitor ARV Therapy Clinical Laboratory Treatment adherence Program adherence: keeping visit appointments 216 Clinical Monitoring Weekly visits for the first 8 weeks Assess adherence, side effects/toxicity, immune reconstitution and growth Symptom checklist and targeted physical exam Review and recalculate dose, if needed, at each visit based on weight Dispense one week of medication To decrease burden on the family, follow-up visits can be combined with other health care visits 217 Clinical Monitoring (2) Monthly visits after the first 8 weeks if adherence is excellent At each visit: Interim history Symptom checklist Targeted physical exam Growth and nutritional assessment Developmental assessment Psychosocial assessment Adherence with caregiver and older child when appropriate ARV prescription (recalculate doses) Referral for support services as needed 218 Laboratory Monitoring CD4 count and percent Every 6 months to monitor ART efficacy Hg at 1 month for those on AZT Thereafter, if symptoms indicate Abnormal findings on history or physical may warrant additional laboratory testing Abnormal lab results may indicate ART toxicities, intercurrent illnesses, and/or advancing disease 219 Defining ART Success Mild or no reported side effects Excellent adherence Improved clinical status in 6 months Improved growth Improvement in neurological symptoms and development No new AIDS defining illness Fewer intercurrent illnesses Improved or stabilized immune status in 6 months 220 Attending to ART Toxicities In general, ART is well tolerated Similar to adult ART care, high level of attention needs to be given to potential adverse effects such as: ART toxicity, immune reconstitution, intercurrent illness, disease progression, drug interaction Please refer to detailed toxicity information covered in the adult sections 221 Attending to ART Toxicities Remember: Clinical judgment is important: Something other than ART may be causing the adverse effect Lab error might confound the assessment of toxicity severity Every individual is unique and might not fit precisely into a table or guideline Response to management plan may be the only way to determine if symptoms/problems are due to ART toxicity 222 Switching Single Drug for Toxicity First- line drug Major potential toxicity Drug substitution ABC Hypersensitivity reaction—DO NOT RECHALLENGE AZT Lactic acidosis ABC Severe gastro-intestinal intolerance d4T or ABC Severe anemia or neutropenia d4T or ABC Lactic acidosis ABC AZT d4T Lipoatrophy / metabolic syndrome Peripheral neuropathy AZT or ABC Pancreatitis 223 Switching Single Drug for Toxicity First- line drug Major potential toxicity Drug substitution Persistent severe CNS toxicity NVP Potential teratogenicity NVP Severe hepatotoxicity EFV Hypersensitivity DO NOT RECHALLENGE: use Triple NNRTI (disadvantage, EFV NVP Severe life threatening rash (Stevens Johnson Syndrome) may be less potent) PI (disadvantage, premature start of 2nd line ARV drug) 224 Recognizing Treatment Failure Inadequate adherence is the most common cause of treatment failure in children Issues to consider with regard to adherence: Who administers drug? How is drug administered? Is it the drug? Resistance to specific agents may have a significant impact on treatment efficacy Resistance to specific drugs can develop secondary to inadequate adherence, inadequate drug levels and selection of pre-existing mutations with selective pressure of present regimen 225 Clinical Indications of Treatment Failure Lack of or decline in growth rate in children who show an initial response to treatment (WHO Stage III or IV) Loss of neurodevelopmental milestones or development of encephalopathy (WHO Stage IV) Occurrence of new opportunistic infections or malignancies or recurrence of infections, such as oral candidiasis that is refractory to treatment or esophageal candidiasis (WHO Stage III or IV) 226 Immunologic Indicators of Treatment Failure Development of age-related severe immunodeficiency after initial immune recovery Despite > 24 weeks of treatment Confirmed with at least one subsequent CD4 measurement Lack of improvement in CD4 cell percentage or absolute count despite >24 weeks of treatment Rapid rate of decline to or below threshold of age-related severe immunodeficiency 227 Second-Line Regimens ART sequencing based on resistance patterns associated with specific agents Goal is to replace failing first-line regimen with a second that has minimal potential for cross resistance Choices balance potency, toxicity, formulation, and cost As new data becomes available, these may change 228 Pediatric Second-Line Regimens AZT or d4T: substitute abacavir (ABC) 3TC: substitute didanosine (ddI) NVP or EFV: substitute lopinavir/ritonavir (LPV/ritonavir) or if no cold chain available, then nelfinavir 229 Abacavir (ABC) Formulation Oral solution: 20 mg/ml Tablets: 300 mg Can take with or without food Most serious adverse event is acute hypersensitivity reaction – rare (<3%) but can be fatal Monitor side effects and toxicity Do not rechallenge if hypersensitivity reaction is suspected 230 Didanosine (ddI) Formulation 25, 50, 100, 200 mg tabs 10 mg/ml liquid For proper buffer dose, 2 tabs must be used Administer on empty stomach 1 hour before or 2 hours after meal; don’t take with acidic drinks but can take with water This may make administration of regimen difficult, as drugs may not all be taken together Monitor side effects and toxicity 231 Lopinavir/ritonavir (Kaletra) Formulation – dose based on lopinavir Solution: 80/20 mg/ml Capsule: 133.3/33.3 mg Must take with food Can be stored at room temperature once dispensed – stable for 60 days Bad taste – can be masked with sweets A very “forgiving” drug Monitor side effects and toxicity 232 Role of the Multidisciplinary Team Non-clinicians may be the first to hear about a medication toxicity. Their finding need to be communicated to providers who should note patient symptoms/signs in the medical record Decisions and follow-up should be discussed in multidisciplinary team meetings Adherence needs to be discussed at every visit and contact (clinician, counselors etc) 233 Patient Education The parent/patient should be aware of what to expect when starting ART and while receiving ART The parent/patient should be aware of possible side effects The parent/patient should know what to do if she believes she is experiencing a side effect (especially if this happens when the clinic is closed) 234 Case Study A 6 month old baby girl, Mulu, presents to the clinic 12 days after her appointment date Mother complains her daughter has had a cough and diarrhea for the last 2 weeks 235 Case Continuation Mother was enrolled in PMTCT program and both baby and mother took Nevirapine Baby was enrolled at the HIV clinic at 4 weeks and started on Cotrimazole prophylaxis Exclusively breastfed for 6 months Weaned with no breastfeeding for last 2 weeks Weight gain normal for first 6 months Adherence to care has been poor with mother missing many appointment dates 236 Case Continuation Diarrhea has been persistent with loose watery stools passed 6 times each day for the last 2 weeks Little improvement on oral rehydration therapy Cough has been progressive Unresponsive to Amoxicillin Fever, lethargy and poor feeding File shows 1st DNA PCR was negative 237 Clinical Exam Vitals: Weight 5.4 kg (1 month ago was 6.4 kg), Temperature 37.8 C Some wasting present with mild dehydration Child irritable and listless Chest exam finds left sided bronchial breathing Rest of the exam is unremarkable 238 Growth Chart 239 Case Continuation Chest X-ray showed left lower lobe pneumonia Prescribe Erythromycin Oral rehydration therapy for diarrhea Cotrimoxazole prophylaxis Nutritional counseling and advice Multidisciplinary team meeting planned Follow up in 2 weeks 240 Case Continuation Mother does not return till her 7 month visit Baby’s cough resolved, however diarrhea has persisted No fever or vomiting noted Weight has dropped to 5.2 kg despite mother following nutritional advice She is adherent to cotrimoxazole Stool studies from previous visit were normal 241 Case Continuation Clinician is concerned this infant might have HIV and need ART He sends DNA PCR, CD4, LFTs, CBC and chemistry Oral rehydration therapy for diarrhea He sends mother for adherence training in anticipation of starting ART at next visit Cotrimoxazole prophylaxis Nutritional counseling and advice Follow up in 2 weeks 242 Case Continuation At her next visit her weight is unchanged (5.2Kg) and diarrhea is still present DNA PCR is positive, CD4% done at 7 months of age is 20% Baselines tests were within normal Is she eligible for ART? 243 Clinical Question Considerations for starting ART Is family appropriately prepared? Does mother understand critical importance of good adherence? Are there any clinical or laboratory contraindications to specific drugs? What ART would you start? 244 Case Conclusion Adherence counseling done and mother understands importance She is put on: AZT: 7ml twice a day 3TC: 2ml twice a day and NVP: 2ml once a day At next visit 1 week later, she has no new complaints and is tolerating her medications 2 weeks later she has gained 500gm Since infant is tolerating medications well escalate the dose of NVP to 4ml twice a day 245 Summary ART can provide life sustaining support for the HIV infected child Using clinical staging and CD4 count can help identify the eligible child In the case of rapidly progressing disease, clinical judgment may identify the eligible child before diagnosis is confirmed There are unique adherence challenges for children on ART Families need additional support for adherence and frequently changing dosage requirements A child on ART must be monitored carefully in order to identify adverse events early and respond appropriately The multi-disciplinary team plays an important role in assessing adherence and in monitoring the child on ART 246 Pediatric Adherence Learning Objectives Identify ways to prepare a family for ARV adherence List ways to monitor and support ARV adherence Describe ways to assess adherence 248 Adherence to Treatment: Issues for Children ARV treatment for children requires: Collaboration between the child and caregiver(s) • Commitment of the caregiver(s) • Cooperation of the child ARV treatment for children is complicated by: Developmental stage/age of the child Parent-child interaction Psychosocial milieu Relatively poor palatability of many pediatric formulations Caregiver factors 249 Reported Difficulties Taking ARV Medications, PENTA 5 Taste/Palatability/Volume Difficulties with unpleasant flavor and/or smell Nausea Too many pills Social Situations – Fear of disclosure Visiting or out with friends Visiting relatives over weekend Visitors in house Had to leave child with a friend for the day Gibb D et al, Pediatr Infect Dis J 2003:22;56 250 Factors Associated with Adherence Demographic Variables: age, sex, caregiver type, caregiver sex, income Disclosure to child, to others Caregiver-child communication Caregiver self-efficacy Caregiver health beliefs Caregiver depression Stress Stigma 251 An Approach to Adherence: Giving Medications to Infants & Children Promoting Adherence Education Preparation Monitoring Support Assessing Adherence Assessment Methods Addressing Barriers 252 Promoting Adherence 1. Education 2. Preparation Support Education Monitoring Preparation 3. Monitoring 4. Support 253 1. Adherence Education Define adherence Never missing a dose Keeping to specific times of administration Taking it the “right” way Lifelong treatment, even when feeling well Underscore difficulty of task Explain importance of strict adherence Use simple terms, visual aids, analogies Emphasize need for communication with health care team Trust Partnership Honesty 254 2. Adherence Preparation ARV treatment is rarely an emergency Take time to prepare the child and the caregiver Personalize medication administration to match the specific aspects of a child’s and family’s life Address the WHO, WHAT, WHEN and HOW of medication administration. WHO will administer the medications? • Everyday? Weekdays and weekends? WHAT medications will be given? • Familiarity with medication WHEN will medications be given? • Establish specific times and routines HOW will medications be given? • Details of administration: using syringes or measured spoons, cutting and crushing tablets, with or without food, mixed with beverage, mixed together, sequencing 255 Questions that Help Assess Readiness Has the mother disclosed HIV status to anyone? Do the other people in the household know about the child’s diagnosis? Is there support in the household/family? Is the living situation stable? Does the mother understand ARV treatments, dosages, expected outcomes, potential side effects? Does the mother appreciate the need for intensive monitoring and follow-up? Does the mother understand the need for strict adherence? Has the child tasted the medications? How does the child’s developmental level influence ability to take medications? Have the health providers observed medication administration? 256 2. Adherence Preparation (2) Other preparatory tools for children: Taste testing Observation of dosing Training for pill swallowing Behavioral reward system Role play Anticipating problems • Hypothetical scenarios – What would you do if….vomiting, refusal, fever, other? 257 3. Adherence Monitoring No perfect measures Emphasize the importance of honest reporting Importance of multidisciplinary approach to monitoring Provide all possible support as discussed in adult ART care 258 4. Adherence Support Lifelong adherence to complex medication regimens is an extremely difficult task! Identify and reinforce effective, successful strategies Psychosocial support Disclosure Adherence buddy Support groups Adherence Aids Pill boxes Blister packs Calendars Pre-pouring Labeling syringes 259 What Do You Do When Adherence is Incomplete? Assess why adherence is incomplete Address the barriers to adherence 260 Assessing Incomplete Adherence Review current regimen Inquire about problems administering medications – obtain a descriptive assessment Review WHO, WHAT, WHEN, HOW Observe administration 261 Addressing Adherence Barriers: What to Do Next Identify specific barriers to adherence Consider stopping current regimen Address specific barriers to adherence Alter current regimen or change to new regimen Formulation or single drug substitution New regimen in the case of treatment failure Begin again Adherence education Adherence preparation Adherence monitoring Adherence support 262 Adherence Fatigue Do not assume “once adherent, always adherent” It can be anticipated that with time: Children may tire of taking medications Caretakers may tire of administering/supervising medication Providers may tire of monitoring/supporting adherence Beware of adherence fatigue! 263 Case 1: Kebede Kebede is a 2.5 year-old boy who has been enrolled in the clinic since birth He began ZDV + 3TC + NVP at 6 months of age when he was diagnosed with pneumonia and failure-to-thrive. He has done very well on this regimen 264 Kebede’s Current Medications ZDV 15cc every 12 hours 3TC 6cc every 12 hours NVP 10cc every 12 hours Cotrimoxazole 10cc every morning MVI 1 cc every morning 265 Kebede Alem, Kebede’s mother, reports that lately she has been having trouble giving him medication. In the past he has always taken the ARV treatment easily, but over the last several months it hasn’t gone well What questions should you ask Alem? 266 Questions for Alem Who gives the medicine? All the time? Which medications is he getting? What happens when Alem tries to give him his medication –what does Kebede do? Does he 1) refuse; 2)vomit, spit, choke; 3)run away? Does this happen all of the time or some of the time? Is it one drug in particular or all of the drugs? How long does it take to give him his medication? Has he missed any of this doses? All of the medications or just one? Has Alem found anything that helps to give his meds? Other? 267 Kebede Alem reports that he doesn’t like the ZDV. He runs from her when she tries to give him his medications. She must capture him, hold him down, force his mouth open to take the ZDV. He then gags and chokes, often vomiting the medicine He takes the NVP and 3TC, but sometimes she thinks he doesn’t keep them down either. Alem, having learned the importance of adherence, is worried What do you need to know to begin to determine the cause of Kebede’s behavior? 268 Possible Reasons for Kebede’s Behavior Change New developmental stage Increasing emotional and physical independence, “terrible twos” Changes in household Change in schedule New changes in caretaker New members of household Adherence fatigue Other What do you need to do now? 269 Incomplete Adherence: What to do Next? Identify specific barriers to adherence Observe medication administration and parent-child interaction Address specific barriers to adherence Offer explanation for Kebede’s change in behavior Alter current regimen or change to new regimen • Formulation or single drug substitution • New regimen in the case of treatment failure Begin again with adherence • • • • Education Preparation Monitoring Support 270 Kebede You feel that the problem is probably related only to the ZDV and may require a change or alteration in the regimen Since Alem understands the importance of adherence and is committed to Kebede taking all of his medications, you begin to discuss options with her What are some possible solutions? 271 Other Ways to Give Kebede Medications Consider behavioral interventions Reward system Explore ways to mask taste Mix with liquids Mix medications together Tasty “chaser” Explore other formulations Crushed tablet if dosing appropriate Other? 272 Kebede: Conclusion Dosing: You look at the dosing guidelines brochure for each of Kebede’s medications Each ZDV capsule = 100mg Together with Alem you decide to change the ZDV to 2 capsules twice daily Follow up Alem & Kebede return 2 weeks later. Alem reports success giving Kebede crushed tablets (She crushes and mixes the tab with sweet pudding) and he takes it willingly 273 Summary: Adherence to ARV for Children There are multiple barriers to adherence Successful adherence requires Education and preparation before starting treatment Assessment and monitoring during treatment Most families will have periods of time when adherence is incomplete Barriers to adherence should be assessed and addressed at each clinic visit Providers and families may experience adherence fatigue 274 Summary Adherence for children Involve the child as well as one or more adults Pay attention to: • Age, developmental stage, feelings, health status of the child • Beliefs and feelings of the caregivers • Family dynamics Adherence for children should be viewed as ongoing processes requiring: Systematic approach Varied skills held in multidisciplinary teams 275