One of the great professional joys of a part-time life in or about paediatric palliative care is being made constantly aware of how much there is in the world that I know next to nothing about. (One of the great personal joys is being able to do something that improves a short life, within a multi-professional team.)
One thing that has always been a sneaking under-feeling, perhaps based in a desperate hope rather than any evidence, is that there are a core of things that children with life-limiting conditions struggle with, and that if I can keep up my skills in constipation management, pain relief, emergency seizure control and sleep hygiene I’ll be able to do some good.
Well, this month in the Archives there’s a reassuring paper that sort of agrees with my unstructured assessment.
275 patients from 9 North American hospitals took part in a longitudinal study examining the burden of symptoms in children with long-term, life-limiting conditions. They found that clinicians under-reported symptoms, compared with parents, and that while there were variations the average number of symptoms reported was 3.2
There are a range of within and between group comparisons too, pointing to children with feeding tubes or significant mobility problems having a greater symptom burden. While the authors can’t use the data they have to come up with a definitive answer to these associations, they hypothesise that the relationship may be that those with an increased complexity of problems are more likely to have a greater number of different symptoms – something that everyone who’s spent time in community paediatrics will attest to.
Where this paper leaves me is with a reminder that sometimes the simple act of describing a problem clearly can encourage me to seek better solutions. We need to look for studies to work on clusters of symptoms – making pain, and sleep and poo all better at once. And we need to remember to ask, repeatedly, about the problems our patients are experiencing and listening to all of the answers not just the ones we can do something about.
– Bob Phillips