Pain in children living with and beyond cancer is understudied and undertreated. Pain science education (PSE) is a conceptual change strategy facilitating patients’ understanding of the biopsychosocial aspects of pain. Preliminary studies on the adaptation of PSE interventions to adults with and beyond cancer provide a foundation for pediatric research. PSE could help childhood cancer survivors experiencing persistent pain and pain-related worry after active treatment. PSE may also help children receiving cancer treatment, providing them with a foundation of adaptive pain beliefs and cognitions, and preparing them for procedural and treatment-related pain. We direct this paper towards pediatric oncology clinicians, policy makers and researchers working with children living with and beyond cancer. We aim to; (1) identify challenges in adapting PSE for children living with and beyond cancer, (2) offer possible solutions, and (3) propose research questions to guide the implementation of PSE for children living with and beyond cancer.

Background/Objectives. Despite advances in the treatment of sickle cell disease (SCD), cerebrovascular and cognitive consequences can be lifelong. Hematopoietic cell transplantation (HCT) is an established curative therapy and recent studies have demonstrated efficacy with reduced toxicity nonmyeloblative (NMA) regimens, but little is known about neuropsychological outcomes. The objective of this study was to describe neuropsychological, behavioral, and quality of life outcomes with medical correlates in children with SCD who received an NMA matched sibling donor (MSD) HCT. Design/Methods. This retrospective cohort analysis of nine patients with hemoglobin SS SCD underwent MSD HCT using the National Institutes of Health (NIH) NMA protocol. Results. Mean full scale intellectual functioning (FSIQ) was average pre-HCT (FSIQ=92.1, SD 9.0; n=8) and 2 years post-HCT (mean FSIQ=96.6; SD 11.1; N=9). Neuropsychological functioning was largely average across all cognitive domains. Moderate improvements were seen in processing speed and verbal memory (Cohen’s d=0.50-0.57) post-HCT, and declines occurred in measures of attention and fine motor speed and dexterity (Cohen’s d=0.70-0.81). Parents reported improved quality of life (Cohen’s d=0.91), less impact of SCD on their family, and less worry about their child’s future (Cohen’s d=1.44). Exploratory analysis showed relationships between pre-HCT hemoglobin (r=0.74, p<0.05) and creatinine (r=-0.75, p<0.01) with cognitive functioning, and a positive relationship between processing speed and time post-HCT (r=0.73). Conclusion. Neuropsychological functioning in a sample of children and adolescents treated identically with NMA MSD HCT remained stable or improved in most cognitive domains, and improvements in quality of life and family functioning were observed.