Our findings are consistent with existing literature that children undergoing oncological treatment experience a high degree of suffering, related to several symptoms at any given time1,7,8. These symptoms are both physical and psychological, and can cause a high degree of distress.
We included children regardless of the timepoint in their diagnosis and treatment trajectory. Our inclusion criteria varied from other studies as we recruited children undergoing bone marrow transplantation for non-malignant conditions and children younger than 7 years if they were deemed able to understand and respond to the MSAS 7–12 form. The rationale for this was our hypothesis that neither of these groups are immune from suffering and both can express this suffering. We acknowledge that the MSAS 7–12 has not been validated in children younger than 7, however the younger children in our study appeared capable and keen to participate. While our numbers are too small to compare subgroups, we would support including both these groups in future studies.
Prevalence of some symptoms and mean number of symptoms experienced were higher in our study than that reported by others who have also explored symptoms for children with cancer who are not just at end of life1,7,8. For example, pain was reported by 79% of children and 89% of parents in our study, compared to 48% in the PediQUEST study1, 32% in the MSAS 7–12 validation study7, and 49% in the MSAS 10–18 study8. In our study, an average of 5 and 18 symptoms was reported for children aged 5 to 9 and 10–18 respectively, compared with 1.9 and 12.7 in the MSAS 7–12 and MSAS 10–18 validation studies. Parents reported a median of 14 symptoms, compared with 5 in the PediQUEST study (parent and children surveys).
The higher prevalence of symptoms in our study is likely related to the higher proportion of inpatient survey completion (81% in our study versus 11% in the PediQUEST study1). In our study, 61% of children had received chemotherapy in the preceding 10 days, a factor associated with a higher symptom burden in the PediQUEST study1. In addition, more intensive therapies due to the inclusion of children early in their cancer treatment course and a higher proportion of children with haematological malignancies, are likely to have contributed to higher symptom burden and report
Parent and child reports of symptom presence and distress were usually consistent in our study. For example, sadness was reported in 52% of child surveys and 59% of adult surveys. When present, sadness caused high distress 33% and 28% of the time according to child and parent reports respectively. Similarly, pain was reported in 79% and 89% of child and parent surveys respectively, with resulting high distress 43% and 48% of the time when present. Parent and child reports of distress did not always correlate however, for example, children seemed more distressed by vomiting and dizziness, and less distressed by headaches than parents may have recognised. This speaks to the importance of obtaining and hearing the child’s voice, and not solely relying on proxy reports.
We feel that our most pertinent study finding is the importance of multi-dimensional symptom assessment. Unlike the PediQUEST study findings that when a symptom was present it usually caused high distress1, in our study the presence of a symptom didn’t necessarily correlate with distress. Symptoms may be present with high frequency but cause little distress and therefore require little clinical attention; conversely, infrequent symptoms such as dysphagia may cause disproportionately high distress and warrant aggressive proactive symptom management.
We propose that it is crucial to reflect on how we assess, consider and use the four dimensions of the MSAS for a given child. It is possible that untreated frequent or severe symptoms may over time lead to more distress on subsequent assessment, causing disproportionate negative impact on quality of life in these vulnerable patients that could be ameliorated with a more active expectant approach. Future studies could focus on how multi-dimensional symptom assessment tools might identify predictors of distress, which could in turn guide intensity of symptom control or promote protocols for timely referral to supportive care teams.
Ultimately, patient-centred care requires exploration of the patient’s voice and agenda. Knowledge that a symptom is present is less useful than understanding its impact, and this is the very reason for the development of multi-dimensional symptom assessment scales such as the MSAS versions. Understanding the degree and source of distress in a patient’s own words can guide symptom management so that time and resources are invested in a way that optimally addresses patients’ priorities.
Strengths and Limitations
The numbers in our study are low, and don’t allow comparison across subgroups like disease type and episode of care setting. Unfortunately, we did not collect data about the incidence of distress being escalated to the oncology team, but this would have been useful and should be included in future studies. Ultimately, the prospective design, and inclusion of both the children and parent voices are strengths of the study, and our findings contribute to emerging literature that includes the child’s voice. In addition, the high proportion of inpatients in our study complements and adds to existing literature which has predominantly been based in the outpatient setting.