The veil of cancer symptoms in children: Symptoms we know about are not the same as the ones that cause distress

Abstract

Introduction Children with cancer experience distressing symptoms, yet routine and systematic screening of symptoms in children is rare. In adult cancer settings, the use of Patient Reported Outcomes (PRO) for symptom screening is common and has demonstrate a range of benefits to patients, clinicians and health systems. Less is known about using PROs in children and if the same benefits can be realized.We aimed to explore symptom burden in a cohort of children, and to examine the feasibility and acceptability of using the Symptom Screening in Pediatrics (SSPedi) tool from the child and family perspectives. Methods We reviewed free-text records for phone calls made to oncology nurses over a 6 month period. Reasons for calls were categorized and calls about symptoms were further categorized. We then prospectively collected a convenience sample of patient reports of symptom distress using the 15 item SSPedi tool. Results There were 717 phone calls regarding 249 patients over a 6 month-time period. Only 12% of phone calls (N=89) were about symptoms. Of these, most (N=23,26%) were regarding pain, with the remainder about 14 different symptoms. Forty-six children aged 8-18 years completed the SSPedi. The symptoms causing the most bother were sleep (51.47%), fatigue (43%) and changes in taste (36%). Conclusions The symptoms that cause the most bother to children are not the same symptoms reported as a concern by parents in phone calls.More research is required to better understand how to reduce symptom burden in children. Use of PROs in this patient group is feasible and acceptable.L6284219442019-07-11 <br />