Paper Presentation: Symptom Reporting Strategies—Patient and Parent Experiences of Cancer Symptoms as Assessed by the Memorial Symptom Assessment Scale for Children (231-3)

3:10–3:30 pm Friday, September 4

Treatment for childhood cancer is associated with symptoms that contribute to poorer psychological and physical functioning and decreased quality of life. Symptom assessment scales have been used to identify the prevalence, severity, and distress related to cancer treatment.

Such tools require parents and patients to score their symptoms with regard to severity, frequency, and distress, with such scores being used to calculate global symptom scores for each patient. While these scores provide statistical analysis of symptoms in childhood cancer, the clinical relevance of the scores are not well understood. Eligible participants were children ages 7–18 receiving chemotherapy and their primary caregiver. This mixed methods study included the completion of an age appropriate MSAS scale, as well as a semistructured interview asking follow-up questions about expectations and experiences of symptoms as well as the frequency, severity, and distress levels endorsed on the MSAS scale. MSAS scores were calculated and interviews were themed using consensual qualitative analysis. The most prevalent symptoms in children were pain (60%), tiredness (50%), and vomiting (50%). Symptoms most prevalent in adolescents included dry mouth (100%), nausea, drowsiness, and not looking the same (83% each). Patients and parents reported expecting to be sick during chemotherapy, accepting the severity and distress of symptoms as a part of the process. Symptom distress was often related to limitations in the ability to function in age related activities. Lastly, patients reported experiencing co-occurring symptoms that clustered together during cancer treatment. Conclusion: Symptom assessment tools for childhood cancer demonstrate that children and adolescents experience multiple distressing symptoms during treatment for cancer. This preliminary exploration suggests that patient and parent expectations about cancer treatment and the impact of symptoms on daily functioning may influence perceptions of symptom severity and distress, warranting further research on the clinical interpretation of symptom assessment scales in childhood cancer treatment.

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