Paediatrics: neurological and developmental outcomes

Rebecca Biggs from St Mary’s Family Clinic, London, highlighted the importance of continual developmental monitoring for HIV positive children in an oral presentation. [1]

This study compared neurological and early developmental outcome of two groups of children under three years and earlier and later disease stages. Group 1 was defined as presenting with severe HIV disease other than encephalopathy (category C) and Group 2 presenting with mild or moderate disease (category A/B).

A paediatric physiotherapist and a paediatrician evaluated the children’s neurological functions, and development was assessed using the Bayley Scales of Infant Development II by a clinical psychologist and paediatric physiotherapist.

The investigators found 43% of children in group 1 (n=32, mean age at assessment 16 months) had abnormal neurological signs compared to 7% (n=31, mean age 18 months) in group 2. Twenty per cent of group 1 and 61% of group 2 had developmental scores within the normal range in both mental and motor functions.

The investigators concluded that in the era of HAART severe early HIV disease still relates to abnormal neurology with motor impairment and developmental delays, and that children are surviving longer with developmental needs. They stressed the need for regular developmental monitoring and these results have implications for community services.

Transition from paediatric to adult care

A poster from Dr K Miles and colleagues from Mortimer Market explored the (complicated and very much on the upswing) issue of HIV positive adolescents in transition from paediatric to adult care. [2]

This small study reports findings from semi-structured interviews with seven adolescents who have undergone transition from paediatric to adult HIV outpatient services.

Issues concerning stigma, new sexual opportunities and the loss of a lifetime healthcare team are all difficult factors for adolescents transferring care from paediatric to adult clinics. The investigators emphasised that “Neither a simple transfer to adult services nor allowing adolescents to ‘drop out’ of medical care is considered acceptable care for young people with HIV”.

The feedback from those interviewed include a beneficial effect of including adult healthcare providers early on in the preparation for transition, concerns over the co-ordination of haemophiliac and HIV care (anecdotally this seems complex throughout adult care), and lack of preparedness for an adult and predominately gay clinic population. The benefits included a sense of independence, increased responsibility and the satisfaction of being treated as an adult. Those who had had a strong rapport with their paediatric HIV team experienced a sense of loss. Some found the transition ‘easy’ and others expressed concerns.

The investigators felt that this study supports the need for effective transition protocols and the development of adolescent-specific models of care to best facilitate this crossover from paediatric to adult care facilities and their ongoing care as adults.

All references are to abstracts presented at 9th BHIVA Conference, 24-26 April 2003, Manchester.