Patient-reported symptom distress, and most bothersome issues, before and during cancer treatment

INTRODUCTION: Frequently reported symptoms and treatment side effects may not be the most bothersome issues to patients with cancer. The purpose of this study was to investigate patient-reported symptom distress and bothersome issues among participants with cancer. METHODS: Participants completed the Symptom Distress Scale-15 before treatment (T1) and during cancer treatment (T2) and reported up to two most bothersome issues among symptoms rated with moderate-to-severe distress. We compared symptom ratings and perceived bother and explored two approaches predicting patients’ most bothersome issues: worst absolute symptom score or worst change from pretreatment. RESULTS: Significantly, (P≤0.0002) more patients reported moderate-to-severe distress at T2 for eight of 13 symptoms. At T1, 81% of patients reported one and 56% reported multiple symptoms with moderate-to-severe distress, while at T2, 89% reported one and 69% reported multiple symptoms with moderate-to-severe distress. Impact on sexual activity/interest, pain, fatigue, and insomnia were the most prevalent symptoms with moderate-to-severe distress. Fatigue, pain, and insomnia were perceived most often as bothersome. When one symptom was rated moderate-to-severe, predictive accuracy of the absolute score was 46% and 48% (T1 & T2) and 38% with the change score (T2–T1). When two or more symptoms were rated moderate-to-severe, predictive accuracy of the absolute score was 76% and 79% (T1 & T2) and 70% with the change score (T2–T1). CONCLUSION: More patients experienced moderate-to-severe symptom distress after treatment initiation. Patient identification of bothersome issues could not be assumed based on prevalence of symptoms reported with moderate-to-severe distress. The absolute symptom distress scores identified patients’ most bothersome issues with good accuracy, outperforming change scores.