HIV Pathway

Self Care

Recognition that child is at risk of HIV

Related Competencies

Know

  • That women with HIV can transmit HIV to their child at the time of birth
  • That babies and children with HIV are not always symptomatic
  • Risk factors for HIV infection for mother and child

Be Able To

  • Access appropriate medical care

Recognition that child’s symptoms are sufficiently severe to seek medical help

Related Competencies

Know

  • That a child who is unwell, particularly if the cause is not known, should see a doctor
  • When a child is suffering from more frequent infections than is normal for their age
  • That a child who is not growing or developing normally should see a doctor

Be Able To

  • Access appropriate medical care

Initial Assessment

Recognition of HIV as a possible cause of a broad spectrum of clinical presentations
Recognition of risk factors for HIV
Recognition of the importance of making the diagnosis
Knowledge of local pathway for referral

Related Competencies

Know

  • Clinical indicator diseases for paediatric HIV infection (BHIVA guidelines)
  • Which risk groups should be offered HIV testing (BHIVA)
  • The natural history of paediatric HIV infection and that early diagnosis and treatment when appropriate is essential to optimise outcome
  • How the local specialist service for paediatric HIV is organised

Be Able To

  • Make an initial clinical assessment of the child and form a differential diagnosis
  • Determine whether, and with what urgency, referral is required
  • Discuss with the patient and parent/carer the nature of concerns, and the reasons for referral
  • Answer questions regarding the conditions in the differential diagnosis, and HIV in particular
  • Make an appropriate and timely referral

Confirmed Diagnosis

Complete history is essential - infection focused history and examination

Related Competencies

Know

  • The wide variety of clinical presentations of HIV disease
  • Risk factors for acquiring HIV

Be Able To

  • Take an infection focused history, perform a relevant examination, and interpret the findings
  • recognise features suggestive of significant immunodeficiency
  • recognise the features of conditions associated with HIV
  • take a full history of potential co-morbidities, including other blood borne virus infections, TB, sexually transmitted infection, sickle cell disease and interpret the findings
  • examine and interpret findings in relevant body systems, including accurate anthropometry, developmental assessment, GI, chest, ENT, skin and fundoscopy
  • use the clinical history to determine appropriate investigations

Investigations tailored to age of presentation, differential diagnosis and associated risks
Other investigations tailored to specific concerns

Related Competencies

Know

  • That the HIV antibody test is the standard initial HIV diagnostic test
  • The limitations of this test in infants
  • Appropriate diagnostic tests for infants born to HIV infected women
  • The appropriate immunological investigations for assessing degree of immune compromise
  • How to investigate for co-morbidities
  • Local arrangements for sending samples to appropriate laboratories
  • The importance of maintaining confidentiality

Be Able To

  • Explain process of testing and implication of results to child/parent/carer
  • Perform appropriate panel of tests
  • Interpret the results in the context of the age of child, history and clinical findings

Have Access To

  • Microbiology:
    • HIV antibody, viral load
    • HIV pro-viral DNA
    • Tests for co-morbidity
      • VDRL
      • Toxoplasma
      • CMV
      • Hepatitis B, C
      • Varicella
      • EBV
      • TB (Mantoux and IGRA)
  • Immunology
    • Lymphocyte subsets, paediatric panel
    • functional antibodies
  • Haematology
    • Blood count and film
    • Sickle screen
  • Advice re interpretation of results

Management

Recognise that the child has HIV
Adherence to medication
Awareness of risk of transmission
Adolescents awareness of implications for sexual health
Seek appropriate professional advice

Related Competencies

Know

  • That a positive HIV test means that the child has HIV
  • The significance of the test results for infants born to HIV positive women
  • The importance of regular review of infected children not currently on treatment
  • The importance of adherence to medication
  • How HIV is (and is not) transmitted in childhood
  • How to get further information and advice

Be Able To

  • Recognise that child is unwell, and need medical assessment, and with what urgency
  • Take/administer medication
  • Recognise side effects of medication

Have Access To

  • Appropriate professional advice
  • Tools to promote adherence, eg dosette box
  • Web based and written sources of information

Standard Initial Management

Management of infant born to HIV infected woman

Related Competencies

Know

  • Current guidelines for prevention of mother to child transmission of HIV (BHIVA)

Be Able To

  • Liaise with adult HIV specialists, obstetric, midwifery colleagues to formulate a personalised plan for antenatal, perinatal and post natal treatment, before the birth of the child
  • Determine appropriate treatment for the child post delivery
  • Arrange appropriate testing of the baby

Have Access To

  • Specialist advice
  • Virological services
  • Pharmacy support, including appropriate formulations of anti-retroviral medication

Assessment of clinical status, immune function and viral load

Related Competencies

Know

  • Clinical features associated with immune compromise
  • Clinical features associated with symptomatic HIV disease

Be Able To

  • Arrange appropriate investigations
  • Interpret results of investigations
  • Initiate treatment for co-morbid disease

Have Access To

  • Microbiological services
  • Viral load testing
  • Lymphocyte subsets, paediatric panel
  • Specialist advice

Initiation of anti-retroviral therapy if appropriate

Related Competencies

Know

  • Current guidelines for initiation of anti-retroviral therapy (PENTA)
  • Current dosing schedules for paediatric HAART (CHIVA)
  • Side effects/toxicities of HAART drugs (CHIVA website)

Be Able To

  • Investigate for potential toxicity, and interpret results
  • Select most appropriate regimen, taking into account previous exposure, age, weight, formulation, and patient preferences

Have Access To

  • Laboratory services, including tissue typing for B5701
  • Specialist paediatric pharmacy advice

Minimising impact on quality of life
Parent/carer support
Communication with other agencies
Onward referral and liaison if required

Related Competencies

Know

  • The impact which a diagnosis of HIV has on a family
  • That HIV commonly affects more than one family member
  • That the diagnosis still carries considerable stigma, particularly in some ethnic communities
  • The importance of protecting confidentiality within as well as outwith the family
  • Other factors which may have a compounding effect on quality of life, eg asylum issues, drug use, poverty

Be Able To

  • Assess the child in the context of the familial, cultural, religious setting
  • Establish a trusting relationship, in which confidentiality is protected

Have Access To

  • Support from a multi-disciplinary health care team, including nursing, psychology
  • Support from other agencies, eg social work
  • Support from the voluntary sector

Managing disclosure

Related Competencies

Know

  • That children and young people have a right to be informed about their health
  • The importance of providing information appropriate to the developmental stage of the child
  • Current guidance for disclosure (CHIVA, SPAIIN)

Be Able To

  • Discuss disclosure with the family in accordance with guidelines

Have Access To

  • Nursing, and psychology support to assist disclosure
  • Written materials appropriate to developmental stage of child
  • Web based materials
  • Managing infections in the immunocompromised
  • Onward referral and liaison if required

Managing infections in the immunocompromised
Onward referral and liaison if required

Related Competencies

Know

  • Children with HIV may be severely immunocompromised on presentation
  • The wide spectrum of presentation of infection in the immunocompromised
  • The importance of rapid response to infectious episodes

Be Able To

  • Initiate appropriate investigations
  • Initiate appropriate initial empirical therapy

Have Access To

  • Advice from paediatric infectious disease specialists
  • Advice from relevant system specialists
  • Intensive care facilities
  • Microbiological services

Managing other medical and psychosocial co-morbidities
Onward referral and liaison if required

Related Competencies

Know

  • HIV is a multi-system disease which may present to, and need input from a variety of paediatric sub-specialists
  • Children may come from high prevalence countries, where other diseases are also common, eg sickle cell, TB, other blood borne viruses
  • Children presenting with advanced HIV disease may not have reversible disease once treatment is commenced, eg encephalopathy, renal impairment, bronchiectasis
  • HIV may affect neuro-psychological development directly, and as a result of other stresses within family (see 10)

Be Able To

  • Make a holistic assessment of a child’s health care needs
  • Refer to appropriate specialist services

Have Access To

  • Appropriate medical specialist service
  • Multi-disciplinary team, including psychology and social work
  • Paediatric HIV specialist advice

Ongoing Management

Monitoring of clinical status including nutritional status, growth and puberty

Related Competencies

Know

  • The wide variety of clinical presentations of HIV disease
  • Risk factors for acquiring HIV

Be Able To

  • Take an infection focused history, perform a relevant examination, and interpret the findings
  • Recognise features suggestive of significant immunodeficiency
  • Recognise the features of conditions associated with HIV
  • Take a full history of potential co-morbidities, including other blood borne virus infections, TB, sexually transmitted infection, sickle cell disease and interpret the findings
  • Examine and interpret findings in relevant body systems, including accurate anthropometry, developmental assessment, GI, chest, ENT, skin and fundoscopy
  • Use the clinical history to determine appropriate investigations

Monitoring of clinical status including nutritional status, growth and puberty
Monitoring of immune function

Related Competencies

Know

  • Clinical features associated with immune compromise
  • Clinical features associated with symptomatic HIV disease

Be Able To

  • Arrange appropriate investigations
  • Interpret results of investigations
  • Initiate treatment for co-morbid disease

Have Access To

  • Microbiological services
  • Viral load testing
  • Lymphocyte subsets, paediatric panel
  • Specialist advice

Determining optimum time to start anti-retroviral therapy, if not started initially
Monitoring therapy

  • Virological response
  • Adverse effects
  • Adherence
  • Dose adjustment
  • Resistance

Related Competencies

Know

  • Current guidelines for initiation of anti-retroviral therapy (PENTA)
  • Current dosing schedules for paediatric HAART (CHIVA)
  • Side effects/toxicities of HAART drugs (CHIVA website)

Be Able To

  • Investigate for potential toxicity, and interpret results
  • Select most appropriate regimen, taking into account previous exposure, age, weight, formulation, and patient preferences

Have Access To

  • Laboratory services, including tissue typing for B5701
  • Specialist paediatric pharmacy advice

Minimising impact on quality of life
Parent/carer support
Communication with other agencies
Onward referral and liaison if required

Related Competencies

Know

  • The impact which a diagnosis of HIV has on a family
  • That HIV commonly affects more than one family member
  • That the diagnosis still carries considerable stigma, particularly in some ethnic communities
  • The importance of protecting confidentiality within as well as outwith the family
  • Other factors which may have a compounding effect on quality of life, eg asylum issues, drug use, poverty

Be Able To

  • Assess the child in the context of the familial, cultural, religious setting
  • Establish a trusting relationship, in which confidentiality is protected

Have Access To

  • Support from a multi-disciplinary health care team, including nursing, psychology
  • Support from other agencies, eg social work
  • Support from the voluntary sector

Managing disclosure

Related Competencies

Know

  • That children and young people have a right to be informed about their health
  • The importance of providing information appropriate to the developmental stage of the child
  • Current guidance for disclosure (CHIVA, SPAIIN)

Be Able To

  • Discuss disclosure with the family in accordance with guidelines

Have Access To

  • Nursing, and psychology support to assist disclosure
  • Written materials appropriate to developmental stage of child
  • Web based materials

Communication with other agencies
Onward referral and liaison if required

Related Competencies

Know

  • Children with HIV may be severely immunocompromised on presentation
  • The wide spectrum of presentation of infection in the immunocompromised
  • The importance of rapid response to infectious episodes

Be Able To

  • Initiate appropriate investigations
  • Initiate appropriate initial empirical therapy

Have Access To

  • Advice from paediatric infectious disease specialists
  • Advice from relevant system specialists
  • Intensive care facilities
  • Microbiological services

Identification and management of emerging medical and psychosocial co-morbidities
Communication with other agencies
Onward referral and liaison if required

Related Competencies

Know

  • HIV is a multi-system disease which may present to, and need input from a variety of paediatric sub-specialists
  • Children may come from high prevalence countries, where other diseases are also common, eg sickle cell, TB, other blood borne viruses
  • Children presenting with advanced HIV disease may not have reversible disease once treatment is commenced, eg encephalopathy, renal impairment, bronchiectasis
  • HIV may affect neuro-psychological development directly, and as a result of other stresses within family (see 10)

Be Able To

  • Make a holistic assessment of a child’s health care needs
  • Refer to appropriate specialist services

Have Access To

  • Appropriate medical specialist service
  • Multi-disciplinary team, including psychology and social work
  • Paediatric HIV specialist advice

Monitoring therapy

  • Virological response
  • Adverse effects
  • Adherence
  • Dose adjustment
  • Resistance

Related Competencies

Know

  • The importance of achieving and maintaining an undetectable viral load in children on HAART
  • Problems with adherence are the commonest cause of failure to achieve undetectable viral loads (CHIVA guideline)
  • Viral resistance can develop rapidly in children on HAART with detectable viral loads

Be Able To

  • Monitor adherence at every visit
  • Adjust doses and formulation of HAART as children grow and mature
  • Respond rapidly to re-emergence of a detectable viral load in terms of re-checking, in detail discussion of, and support for adherence, checking doses, and arranging resistance testing
  • Adjust HAART on the basis of above assessment

Have Access To

  • Viral resistance testing
  • Specialist paediatric HIV pharmacy advice
  • Specialist paediatric HIV advice
  • Multi-disciplinary team, including nursing and psychology for adherence support

Sexual health advice at appropriate time
Communication and managed transition to adult services
Onward referral and liaison if required

Related Competencies

Know

  • That adolescence presents particular challenges to young people infected with HIV
  • Quality of life as an adult is dependent on maintaining consistent care over this stage
  • Good liaison with adult HIV and sexual health service is essential

Be Able To

  • Follow SPAIIN guidance for transition from paediatric to adult services

Have Access To

  • Adult based HIV specialists, preferably with an interest in adolescent health
  • Sexual health services
  • HIV specialist nursing services

Complex Management (Network MDT Setting)

Management of severe, complicated or rare clinical presentations of HIV, eg severe infection, consequences of profound immunodeficiency, infections acquired abroad
Management of infection with resistant virus
Management of complications with therapy eg significant adverse effects, drug interactions
Significant problems with adherence requiring psychology/social work input
Significant issues around disclosure
Complex medical or psychosocial comorbidities

Related Competencies

Know

  • And have expertise in the management of complex HIV disease in children
  • That management of HIV infection can be complex, and children may present problems not previously encountered in centres with relatively small patient numbers
  • Limitations of local knowledge/expertise
  • Importance of maintaining close links with local service in children referred for specialist care
  • Sources of further information and advice

Be Able To

  • Formulate management plan for children with complex disease

Have Access To

  • Further expert paediatric HIV advice through CHIVA network
  • Expert pharmacy advice, in interpretation of resistance profiles and choice of optimal regimens
  • Drug level monitoring
  • Psychology services with interest/expertise in HIV management
  • Specialist multi-disciplinary team