Featured Article: Siden, H. & Steele, R. (2015) Charting the Territory: Children and families living with progressive life-threatening conditions. Paediatrics & Child Health.
Many children who are in pediatric palliative care have life-threatening diseases which are progressive neurological conditions (PNC). These children are typically affected by impaired central nervous system function and experience multiple physical symptoms including pain, seizures, and loss of mobility. Health care providers attempt to prevent and relieve symptoms however, little is known about patterns of symptoms in these rare diseases.
A recent article from our Charting the Territory study used clinical data collected over time to examine the symptoms these children experienced. Each child on average had 3 reported symptoms with the most common ones being pain, sleep problems, and feeding difficulties. Children with assisted feeding devices such as G/J tubes and children who require extensive home modifications due to mobility issues had, on average, more symptoms than those without.
As many children with PNCs are not capable of speaking, parents are the ones communicating symptoms they observe to their child’s physician. However, there is a discrepancy between the symptoms parents and clinicians reported; clinicians tended to report fewer symptoms. There are multiple possibilities for this inconsistency. Clinicians may only report symptoms that they are confident in treating or they may not assess a certain symptom because they cannot directly ask the non-verbal child. Alternatively, parents may be overemphasizing symptoms if a particular symptom is especially distressing to their child.
What this study tells us is that extra attention needs to be paid to symptoms of children with PNCs, especially if they have G/J tubes and mobility issues. Symptoms can provide insight into an underlying problem. Knowing the frequency and severity of a symptom can provide insight into its nature and help identify an appropriate treatment. Furthermore, clinicians need to be mindful of how parents report their child’s symptoms. It would perhaps be helpful to ask why parents are concerned about a particular symptom in order to address their and their child’s needs.