Symptom assessment in children receiving cancer therapy: the parents' perspective

We aimed to develop an instrument to assess cancer-treatment-related adverse effects that parents believe children find most bothersome and use it to solicit the opinions of parents regarding this issue. Parents of children 4 to 18 years of age who had received intravenous antineoplastic therapy in the last month were asked to rank prevalence, severity, and degree of bother of each symptom on behalf of their child using a questionnaire. One hundred fifty-eight of 200 (82%) questionnaires were evaluable. The most prevalent symptoms identified were mood swings (85%), fatigue (80%), and disappointment at missing activities with friends/peers (74%). These symptoms were also most commonly identified as being significantly severe. Symptoms most commonly identified as the most bothersome were disappointment at missing activities with friends/peers (50%) and feeling worried about receiving treatment, procedures, or side effects (43%). Symptoms most commonly identified as the most severe and bothersome were disappointment at missing activities with friend/peers (46%); feeling worried about receiving treatment, procedures, or side effects (40%); and painful, aching, or stiff bones, joints, or muscles (36%). This information can be used when explaining the effects of cancer treatment to patients/families, creating policies regarding pediatric cancer care and framing research hypotheses in pediatric supportive care.