Henry Winter
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More support needed for parents and carers of children with leukaemia

Henry Winter
Posted by
16 Dec 2011

A new study by scientists at the University of York shows that children diagnosed with acute lymphoblastic leukaemia (ALL) from poorer backgrounds are more likely to die than those from affluent families.

The authors, who were funded by Leukaemia & Lymphoma Research, put this worrying statistic down to the fact that children may not be taking their drugs properly after they leave hospital. Read the full press release

Treatment for ALL is unusual in that it takes so long - two years for girls and three years for boys. After an initial first nine months of chemotherapy in hospital, the majority of treatment becomes the responsibility of parents and is administered at home.

Treatment for ALL is incredibly complicated. An example of one ‘cycle’ of treatment is: Mercaptopurine taken daily one hour after evening meals, methotrexate weekly, dexamethasone twice daily after food for the first five days every 4 weeks, and co-trimoxazole morning and evening but only on Mondays and Tuesdays.

During this time, the child will often appear completely well and the drugs can cause side effects such as nausea and weight gain. It’s no wonder some parents find it hard to cope.

The issue of ‘non-compliance’ with childhood leukaemia drugs has been recognised by doctors for some years. A new blood test developed by our scientists often shows no trace of medication. It’s a problem shared with other self-medicated conditions such as diabetes and indeed chronic myeloid leukaemia, which is treated with a single tablet taken daily. 

It’s absolutely essential for children to stick to their treatment to stop their leukaemia coming back. It is thought that ALL ‘stem cells’ can lie ‘dormant’ in the child’s bone marrow for months on end, unaffected by chemotherapy. These leukaemia stem cells can then ‘wake up’ later on and re-introduce the leukaemia. This is why the period of maintenance treatment needs to be so long.

Ensuring treatment compliance

There is not one clear solution to the problem– it could be providing clearer information and advice, or more home support, or making the drugs more child-friendly and palatable, or designing more effective tests to establish if there are problems of non-compliance. Technology could even be used in the form of a computer game to encourage children to take their drugs.

The positive aspect of this report is that it shows that if we can find a way to make sure children take their drugs, then we can get closer to the goal of ensuring every child survives leukaemia.

Henry Winter - Science Communications team