Children with acute lymphoblastic leukemia (ALL) often experience physical limitations at diagnosis already. Some children are temporarily unable to walk due to factors such as fatigue, pain, or illness. The intensive early treatment phases, in which children receive high doses of steroids (formerly prednisone, now dexamethasone), pose an additional risk for physical decline. Besides the medication, also prolonged hospital stays, immobilization, and a poor nutritional status increase the risk for loss of muscle mass and subsequently muscle strength. Emma den Hartog, PhD student in the Tissing group and the Sports and Exercise Center, explains: ‘Children might feel isolated, they might not be able to join their friends any longer and are not able to do the things they used to do. They may lose their functional independence, which in turn affects their quality of life.’
‘When will my child walk again?’
Parents were asked about their experience with the loss of walking ability of their child: ‘They often have many questions and experience a lot of uncertainty. It is difficult for them to see their child loses its walking ability. Parents, for example, mentioned that it was hard to see their 4 years old son losing its ability to walk while their 2.5 years old daughter was able to walk. One of the first questions they have for the pediatric physical therapist is: ‘When will our child be able to walk again?’’
Just like Karen, mother of Joep (almost 5), who is pictured: 'Joep was diagnosed with ALL on September 9 last year. After six weeks and 13 chemo treatments he started to crawl again and at the end of November he started to walk. He has now had 48 chemo treatments. Fortunately, he is agile and adventurous again. That is very reassuring. He likes to play with a ball and loves all games. He also loves the Infuuts!’
Study indicates incidence and risk factors
Although the issue of losing walking inability was known, supportive data was lacking. Emma: ‘We knew children often temporarily lose their ability to walk, but we didn’t know how often it actually happens, or which children are most at risk.’ In her publication, Emma is the first to determine the incidence. Her analysis shows that 15% of children with ALL are not able to walk at diagnosis, and that more than 25% temporarily stops walking during the intensive early treatment phases. Risk factors include younger age, weight loss, and longer hospital admissions during the first treatment phase. ‘We expected to see a difference between children receiving prednisone (ALL-11 protocol) and those receiving dexamethasone (ALLTogether1 protocol), but we did not find a difference,’ she explains.
More guidance for children, parents and healthcare professionals
The results of this study help to improve guidance for children and their parents. ‘We are now able to explain that losing the ability to walk happens more often and is usually temporarily,’ says Emma. ‘This reduces uncertainties of parents. We are also able to provide more tailored advice about what children still might do.’ This study underlines the importance of early support. Together with the Foundation, information material for children and parents is being developed.