Background Social media (SM) is ubiquitous in modern society. How SM provides information, advice, and community to families coping with childhood cancer is poorly understood. We sought to understand how caregivers of children with cancer use and are affected by SM. Procedure A survey was administered to caregivers of children who were receiving or within the last 5 years received chemotherapy. Differences in variables across groups were evaluated using non-parametric tests and chi-square tests. Results 48/50 caregivers acknowledged use of SM. Facebook was the most used platform (91%). 58% and 56% used SM to read and share information about their child’s cancer, respectively. 42% were comforted while 38% were bothered by cancer-related information on SM. 14 participants (29%) sought a second opinion based on information from SM. Caregivers of children with a poor prognosis were more likely to discuss information from SM with their oncologist (mean difference=1.19, p=0.003) and use treatment from SM that was not initially recommended by their oncologist (OR=1.82, 95% CI 1.37-2.41). Conclusion SM is commonly used by caregivers to obtain and share care-related information. Many noted positive and negative effects of SM on emotional wellness. SM influenced treatment decisions, and this effect was stronger with poorer prognosis. Our results demonstrate the dichotomous impact of SM in medicine—it is a source of both solace and anxiety, a place to confirm treatment decisions and to create doubt in the treatment decisions of the oncologist. This illustrates the importance of discussing SM with caregivers of children with cancer.

Background Collecting symptom, function and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here we report how we determined the recommended Ped-PRO-CTCAE item scoring approach. Methods Scoring approaches compared were 1) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures, 2) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference), and 3) overall number of AEs endorsed. Associations of each AE attribute, AE item score and overall AE score with the PROMIS® Pediatric measures of anxiety, depressive symptoms, and fatigue were examined. The ability of the overall Ped-Pro-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews. Results The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term). Conclusions Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-Pro-CTCAE AE attribute for its simplicity of use in clinical care and research.