Genome and exome sequencing (GS/ES) are increasingly being used in pediatric contexts. We summarize evidence regarding the actual and perceived understanding of GS/ES of parents of a child offered testing for diagnosis and/or management of a symptomatic health condition. We searched four databases (2008–2021) and identified 1264 unique articles, of which 16 met inclusion criteria. We synthesized data from qualitative and quantitative studies and organized results using Ayuso et al. (2013)’s framework of key elements of information for informed consent to GS/ES. Many of the parents represented had prior experience with genetic testing and accessed a form of genetic counseling. Parents’ understanding was varied across the domains evaluated. Parents demonstrated understanding of the various potential direct clinical benefits to their child undergoing GS/ES, including in relation to other genetic tests. We found parents had mixed understanding of the nature of potential secondary findings, and of issues related to data privacy, confidentiality, and usage of sequencing results beyond their child’s clinical care. Genetic counseling consultations improved understanding. Our synthesis indicates that ES/GS can be challenging for families to understand and underscores the importance of equipping healthcare professionals to explore parents’ understanding of ES/GS and the implications of testing for their child.

Background: Childhood cancer survivors are at increased risk of cardiometabolic complications that are exacerbated by poor health behaviors. Critically, many survivors do not meet physical activity guidelines. Objective: The primary aim was to evaluate the feasibility and acceptability of iBounce, a digital health intervention for educating and engaging survivors in physical activity. Our secondary aims were to assess the change in survivors’ physical activity levels and behaviors, aerobic fitness, and health-related quality of life (HRQoL) after participating in the iBounce program. Methods: We recruited survivors aged 8 to 13 years who were ≥12 months post cancer treatment completion. The app-based program involved 10 educational modules, goal setting, and home-based physical activities monitored using an activity tracker. We assessed objective physical activity levels and behaviors using cluster analysis, aerobic fitness, and HRQoL at baseline and after the intervention (week 12). Parents were trained to reassess aerobic fitness at home at follow-up (week 24). Results: In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments, and 23 (77%) commenced iBounce. Our opt-in rate was 59% (30/51), and most (19/23, 83%) of the survivors completed the intervention. More than half (13/23, 57%) of the survivors completed all 10 modules (median 10, IQR 4-10). We achieved a high retention rate (19/27, 70%) and activity tracker compliance (15/19, 79%), and there were no intervention-related adverse events. Survivors reported high satisfaction with iBounce (median enjoyment score 75%; ease-of-use score 86%), but lower satisfaction with the activity tracker (median enjoyment score 60%). Parents reported the program activities to be acceptable (median score 70%), and their overall satisfaction was 60%, potentially because of technological difficulties that resulted in the program becoming disjointed. We did not observe any significant changes in physical activity levels or HRQoL at week 12. Our subgroup analysis for changes in physical activity behaviors in participants (n=11) revealed five cluster groups: most active, active, moderately active, occasionally active, and least active. Of these 11 survivors, 3 (27%) moved to a more active cluster group, highlighting their engagement in more frequent and sustained bouts of moderate-to-vigorous physical activity; 6 (56%) stayed in the same cluster; and 2 (18%) moved to a less active cluster. The survivors’ mean aerobic fitness percentiles increased after completing iBounce (change +17, 95% CI 1.7-32.1; P=.03) but not at follow-up (P=.39). Conclusions: We demonstrated iBounce to be feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity to engage survivors in physical activity at home and may address barriers to care, particularly for regional or remote families. We will use these pilot findings to evaluate an updated version of iBounce. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621000259842; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=ACTRN12621000259842

Activity trackers have emerged as promising devices used to motivate and/or objectively monitor physical activity (PA) levels. It is unknown how activity trackers have been used in interventions for children and adolescents affected by cancer. This review aimed to investigate the effectiveness of wearable activity trackers to monitor and/or improve PA levels and health outcomes in pediatric oncology. Based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses, we conducted an electronic search of four databases (Cumulative Index to Nursing and Allied Health Literature [CINAHL], Medline, Embase, and SportDiscus) between January 2000 and March 2020. The review included PA interventions that used an activity tracker with children (≤18 years) diagnosed with cancer. We excluded studies including adult participants (>18 at time of study participation) and cross-sectional or case-report studies. Twelve studies examining 517 children and adolescent patients and survivors of pediatric cancer (age range: 4–18 years) were included. Intervention delivery ranged from 2 weeks to 12 months. Two of 12 studies reported increases in PA and 6 showed improvements in health outcomes, including aerobic fitness and negative mood. PA interventions using activity trackers within pediatric oncology are highly diverse in study design, study population, and intervention features. Preliminary data suggest that interventions using wearable activity trackers may have a positive impact on health outcomes in children and adolescents affected by cancer. Future research is needed to establish optimal intervention approaches to using activity trackers to increase PA in children affected by cancer.

Purpose: Parents are important facilitators of physical activity for children, yet little is known about the perceptions of parents of childhood cancer survivors. We investigated parent perceptions of their own and their child’s physical activity levels after cancer treatment and examined associations with clinical, demographic, and psychosocial factors. Methods: We conducted a cross-sectional survey among 125 parents and 125 survivors. Parents reported on the perceived importance of their child being physically active and concerns regarding exercising after cancer treatment. Results: Parents and survivors self-reported median (range) of 127.5 (0–1260) and 220 (0–1470) min/week of moderate-to-vigorous physical activity. Most parents (n = 109, 98%) believed that physical activity was highly important for their child. Some parents (n = 19, 17%) reported concerns, most commonly regarding exercise safety (n = 7, 22%). Parents were more likely to perceive that their child should increase physical activity if their child was an adolescent and had high body fat percentage. Conclusions: Physical activity levels varied widely among survivors, reflecting factors including parents’ lifestyles, limited understanding of exercise benefits and perceptions of risk. Given survivors’ insufficient physical activity levels and sedentary behaviour among families, embedding physical activity promotion into health systems and follow-up support could benefit the entire family unit.

Physical activity levels among childhood cancer survivors are typically quantified as a total amount using time spent in various intensities. Yet, most analyses do not consider the transitory nature of children’s behaviors and a more detailed approach could provide complimentary information. We aimed to explore various behavior profiles of survivors’ daily and hourly physical activity patterns. We measured 8-18-year-old survivors’ activity levels over 7 days using wrist accelerometry and cluster analysis. Of the 37 participant datasets, survivors engaged in mean (SD) 36.3 (19.0) min/day of MVPA and 4.1 (1.9) hrs/day of sedentary activity. The cluster analysis revealed five daily movement patterns: ‘most active’ (prevalence 11%), ‘active’ (22%), ‘moderately active + moderately sedentary’ (35%), ‘moderately active + high sedentary’ (5%) and ‘least active’ (27%). Younger survivors and those with less time since treatment completion were more likely to be in the active clusters. Hourly behaviors were characterized by short bursts of MVPA and moderate bouts of sedentary activity. Our approach provides an insightful analysis into the nature and timing of childhood cancer survivors’ movement behaviours. Our findings may assist in the development of targeted interventions to improve physical activity levels.