AIMS The unrelieved symptoms and side effects of often-aggressive cancer treatments can lead to poor outcomes. SyMon-SAYS was developed to minimize symptom management barriers and symptom burdens by routinely collecting and interpreting patient-reported outcomes in pediatric oncology ambulatory settings. This paper reports the preliminary results of the 16-week SyMon-SAYS trial. METHODS Children (ages 8-17) with cancer (on-therapy or within 6-M post-treatment) were randomly assigned to either intervention (IG; weeks 1-16 intervention) or waitlist (WG; weeks 1-8 waitlist, weeks 9-16 intervention) group. Children in the intervention phase reported on 9 symptoms (fatigue, sadness, itch, pain, worry, appetite, nausea, sleep, headache) weekly via an electronic medical record patient portal. Scores exceeding a pre-defined threshold triggered an alert to the treatment team. Parents completed a symptom management barriers questionnaire (SMBQ) at baseline, weeks 8 (primary time-point and analyzed in this paper) and 16. Mixed-effects models were used to evaluate symptom burden over time. RESULTS Data from 75 children (37 IG, 38 WG) were analyzed (mean age=13.3 years, 58.8% male, 74.7% white). Of them, 43.9% had leukemia, and 17.5% brain tumor. On average, the IG completed 11 (possible min=0 max=16) and the WG completed 5 (possible min=0 max=8) symptom checklists; of them, 60% triggered symptom alerts. Results of the mixed-effects models showed significantly (p< 0.05) improvement in fatigue, sadness, worry, appetite and headache. No significant changes were found on others. For SMBQ, IG parents reported significantly in favor of “enough time with my child's doctors/nurses to talk about symptoms” than WG parents from baseline to week 8. No significant differences between IG and WG over time on other SMBQ items. CONCLUSIONS Our preliminary findings showed SyMon-SAYS alleviated emotional related symptoms over time. Physical symptoms might be related more to disease severity and treatment intensity, which we plan to investigate when more data is available.

Background Early detection of cognitive decline in older individuals can be accomplished with brief, computerized measures in diverse settings. The goal of the ARMADA study is to validate the NIH Toolbox for Assessment of Neurological and Behavioral Function (NIHTB) in the neurological aging spectrum from cognitively normal to dementia, and to extend the age range to allow for longitudinal assessment of the oldest individuals. Here, we present baseline data from general population individuals over 85 years of age without cognitive impairment compared with those 65 to 85. Method ARMADA is a multi-site study recruiting participants from established research cohorts. Participants included cognitively average-for-age individuals between the ages of 65–85 (n = 82) and another group 86 and older (n = 105). Baseline characteristics and preliminary data are presented for the Cognition, Emotion, Motor and Sensation modules of the NIHTB. Results Analysis of preliminary baseline data revealed that mean uncorrected standard scores of most cognitive, motor, and sensation measures differed among the groups in the expected direction, such that individuals 65–85 had better performance than individuals 86 and older. Conversely, group scores were similar on most emotion measures. Conclusions This analysis of preliminary baseline data from ARMADA provides initial evidence for the utility of the NIHTB in individuals over age 85 without cognitive impairment, who, as a group, scored lower than those from age 65–85. These results demonstrate the importance of establishing cohort-specific norms relevant to the oldest age group. Longitudinal follow-ups over two years will track cognitive, motor, emotion, and sensory functioning in this group.

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