OPTIMISING PAEDIATRIC HIV CARE

Simplifing adherence:
the approach to using g-tubes in the US

Gastrostomy tubes (g-tubes) can really assist some kids and families with adherence. However they do not always increase adherence when a family is not disciplined enough to give the medicine or if, even more often, they really don't believe in the medicine, they're not sure about the medicine or they are worried about the medicine's toxicity. In this case putting a gastrostomy tube in is not the answer.

They are actually are placed very easily - with endoscopy or during surgery - and we haven't seen any serious complications. However minor complications do occur; the tubes get plugged so you cannot put nelfinavir powder in (or at least we haven't figured out a way).

The g-tube can occassionally fall out, but some of the parents now know how to put them back in! Stomach fluid can leak out of the hole, which can worry people. This is solved by putting in a smaller tube in for while until the hole shrinks down and the larger tube can then be put in again.

A complication which occurs more frequently is that you can get granulation tissue (which can also bother the family because of it's appearance). If this occurs you just use silver nitrate to burn it off chemically.

Regardless of the insertion method, the first tube placed usually has a three to four centimetre appliance inside the stomach, no valve and approximately ten centimetres of tubing protruding from the abdominal wall - called PEG or Malecot in the US. Once a track is formed - this takes about six weeks - a smaller 'button' type of tube with a one-way valve (Bard or Mic-Key) can be placed. Most families can reinsert the small g-tube at home if it comes out and if it dislodges in the stomach it will pass through the intestines without complication.

GASTROSTOMY-TUBES: A USEFUL TOOL IN PAEDIATRIC HIV CARE

A few years ago, gastrostomy tubes (g-tubes) were introduced in our clinic to help provide nutritional support for some of our children. As a result, our hospital now has a group of paediatric surgeons and gastroenterologists with significant experience in placement of these devices who are very committed to this. When we began using HAART more routinely, we noticed the difficulties associated with the giving a triple or quadruple antiretroviral regimen to some of the children, and we realised that a g-tube could be a practical solution to improve both tolerability and adherence.

Currently, we have 10 children (aged from 17 months to 12 years) who have g-tubes exclusively for making adherence easier. The individual circumstances and situations vary in each case, but overall the experience has been very positive. We have had few and only minor complications (occasionally a leak or local irritation). In the past few years, among infants who started triple therapy in the first 2 months of life, we noticed that it is relatively easy to give the medication during the first year. The second year becomes quite challenging though and a few children have benefited from g-tubes.

Under the right circumstances, g-tubes provide significant advantages. Clinically, with improved tolerability and compliance, we have observed better viral load reductions, and improvements in CD4 counts and overall general health. In addition, by making it less stressful to give medication, without needing a struggle, some of the mothers have been able to interact with their children in a more positive way. This has provided them with a more rewarding experience in the context of their already complicated lives.

Obviously, despite the limitations of our experience and the small number of children included, we believe that children can benefit from this approach and that it should be considered as a additional useful aid in paediatric care.

'I prefer using my g-tube to swallowing pills even though I can taste the ritonavir a bi'

Child with tube

'I couldn't fight with my daughter any more because I thought that she would hate me. So before the gastrostomy tube I just didn't give her the medicines'

Mother

'Now we have the gastrostomy tube we don't have to fight with our son because we can give him the medicines when he's asleep.

It is a lot easier to give the medicines on schedule'

Mother

'For children I've become more and more convinced with using g-tubes. It can be a psychological barrier for some doctors, but it is much less invasive than a central line which has more complications and which are used routinely...if my own child needed to take this many pills, I would insist on a g-tube'

Dr Grace Aldrovandi