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Background: There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of Teens Taking Charge Cancer , a web-based self-management program. Methods: A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12-18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. Results: Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% ( n  = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules ( SD 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. Discussion: The results from this pilot study suggest that the current design of the Teens Taking Charge Cancer RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.

Background: Parents of children newly diagnosed with cancer are required to understand a significant amount of new information during a time of distress. Parents of children with cancer have expressed that concise information with visual cues, which can be repeated, positively influences their ability to understand., Objectives: The primary objective was to develop 2 concise, video-based education modules that are understandable to parents of children with cancer. A secondary objective was to determine feasibility of a future trial evaluating efficacy of video-based education., Methods: The study was conducted in phases: script development, video creation, and feasibility testing. Topics were "managing fever at home" and "giving medications at home." Content was developed by pediatric oncology experts and turned into video scripts. Scripts were refined through cognitive interviews with parents of children with cancer. Feasibility testing included recruitment of 20 parents of a child given a diagnosis of cancer within 4 weeks. Parents watched both videos and answered questions that assessed their understanding and perceived confidence., Results: Final scripts were reviewed by 25 participants. Feasibility was achieved with 20 parents recruited within 7 weeks, with 100% watching both videos and answering knowledge and confidence questions., Conclusions: We successfully developed 2 educational videos for parents of children newly diagnosed with cancer. A future trial to test the efficacy of video-based education modules is feasible., Implications to Practice: Delivering quality education to parents of children newly diagnosed with cancer can decrease parental distress and improve safe care during a high-risk time for treatment-related morbidity and mortality., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Purpose: Distress in cancer is defined as multifactorial unpleasant experience of an emotional, psychological, social, or spiritual nature that interferes with ones' ability to cope with cancer and its symptoms and treatment. The aim of this study was to determine clinical and demographic factors associated with the presence of distress in adolescent and young adults (AYAs) with cancer. Methods: Data were collected as part of a field-test study conducted between August 2016 and November 2017 in Canada (Toronto, Edmonton, and Vancouver) to determine the reliability and validity of CDS-AYA (Cancer Distress Scales for Adolescent and Young Adults). The CDS-AYA consist of five independently functioning scales including impact of cancer, physical, emotional, cognitive, and cancer worry. Multivariate logistic regression analyses, using established CDS-AYA cut points, were performed to identify clinical and demographic factors associated with the presence of distress in AYAs of ages 15-39 years with cancer. Results: Across all scales, increased distress was associated with female gender ( p  < 0.05), on-treatment status ( p  < 0.05), and reported poor overall health ( p  < 0.001). For the emotional scale, distress was also associated with being of age 15-19 years ( p  = 0.01). The greatest effect size for all scales was associated with treatment status [ exp(β)  = 1.78-4.6], except for the cognitive scale where gender had a slightly greater effect size. Conclusion: Factors associated with distress in AYA patients with cancer were similar across five CDS-AYA scales. Although it is important to screen all patients for distress, our findings reveal that patients who are female, on treatment, or who report having poorer health may be at a greater risk.

Purpose: To compare the Cancer Distress Scales for Adolescents and Young Adults (CDS-AYA)-Emotional and Impact scales-with the Edmonton Symptom Assessment Scale-revised (ESAS-r), Hospital Anxiety and Depression Scale (HADS), and the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT) for use as a patient-reported outcome-performance measure (PRO-PM) for AYA cancer care. Methods: Data were collected as part of the field test study of CDS-AYA. Assessment criteria were based on a National Quality Forum report. Internal and test-retest (TRT) reliability was assessed using Cronbach's alpha and intraclass correlation coefficients, respectively. A content sort of items in each scale was performed to determine AYA-specific content. Two predefined hypotheses for gender and treatment status were assessed using t -test. Results: Four hundred twenty-one participants were included in the analyses. Cronbach's alpha ranged from 0.79 to 0.94, with only the two scales of CDS-AYA achieving >0.90. TRT reliability for HADS was considered excellent (>0.90), with remaining scales having moderate to good reliability (>0.70). Only the Impact scale of CDS-AYA had items that addressed the specific concerns of AYAs (e.g., romantic relationships). In all scales, active therapy patients had higher levels of distress than patients not receiving treatment ( p  ≤ 0.05). Distress was greater for females than males for all scales, but nonsignificant for both the ESAS-r ( p  = 0.07) and the HADS depression subscale ( p  = 0.13). The proportion of AYAs screening positive for distress varied by instrument. Conclusion: The Impact scale of CDS-AYA met the most criteria for selection of a PROM for use in performance measurement for the AYA cancer population.

Introduction: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses a validated pain assessment and personalised pain treatment advice with centralised decision support via a registered nurse to enable real-time pain treatment in all settings. The algorithm informing pain treatment advice is evidence-based and expert-vetted. This trial will longitudinally evaluate the impact of Pain Squad+, with or without the addition of nurse support, on adolescent health and cost outcomes., Methods and Analysis: This will be a pragmatic, multicentre, waitlist controlled, 3-arm parallel-group superiority randomised trial with 1:1:1 allocation enrolling 74 adolescents with cancer per arm from nine cancer centres. Participants will be 12 to 18 years, English-speaking and with ≥3/10 pain. Exclusion criteria are significant comorbidities, end-of-life status or enrolment in a concurrent pain study. The primary aim is to determine the effect of Pain Squad+, with and without nurse support, on pain intensity in adolescents with cancer, when compared with a waitlist control group. The secondary aims are to determine the immediate and sustained effect over time of using Pain Squad+, with and without nurse support, as per prospective outcome measurements of pain interference, HRQL, pain self-efficacy and cost. Linear mixed models with baseline scores as a covariate will be used. Qualitative interviews with adolescents from all trial arms will be conducted and analysed., Ethics and Dissemination: This trial is approved by the Hospital for Sick Children Research Ethics Board. Results will provide data to guide adolescents with cancer and healthcare teams in treating pain. Dissemination will occur through partnerships with stakeholder groups, scientific meetings, publications, mass media releases and consumer detailing., Trial Registration Number: NCT03632343 ( ClinicalTrials.gov )., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

For many children with cancer, participation in oncology camp programs is an important component of healing that offers opportunities for fun and can have substantial impacts on social and physical well-being. Optimal medical care and infectious screening for children attending oncology camp is critical to maximize safety and opportunities for participation. This paper describes recommendations for a series of common medical issues unique to the care of children with cancer in the camp setting generated by a modified Delphi consensus approach., (© 2019 Wiley Periodicals, Inc.)

Purpose: The use of valid and reliable screening tools to measure distress may help to identify adolescent and young adults (AYA) with cancer who need additional support. Our study describes a two-phase approach to adapt the Australian AYA oncology and survivorship distress screening tools for use in Canada. Methods: Phase 1 involved refining the Australian AYA oncology and survivorship screening tools using cognitive interviews with AYA with cancer and feedback from experts. In phase 2, a field-test study was performed, and Rasch Measurement Theory (RMT) analysis was used for item reduction and to examine reliability and validity. Results: Cognitive interviews with 45 AYA with cancer and feedback from 25 experts resulted in a field-test version of the Cancer Distress Scales for AYA (CDS-AYA) consisting of 91 items that measure 9 constructs. The field-test sample included 515 participants. RMT analysis identified five scales (impact of cancer, physical, emotional, cancer worry, and cognitive) with ordered thresholds, good item fit (-3.70 to 2.82), and acceptable reliability (0.85-0.94). Reliability for the remaining four scales (employment, education, practical, and social) was low, and the scales were retained as checklists, with the exception of the social scale that was dropped. Conclusion: The final item-reduced CDS-AYA consist of 48 items in 5 scales, with 2 stand-alone items in the physical and emotional scales and 23 items in 3 checklists. The CDS-AYA can be used in research and in clinical practice to measure distress in AYA with cancer.

Purpose: Distress is an important issue facing adolescent and young adults (AYA) with cancer due to their stage of development. Metrics are necessary to help improve psychosocial outcomes in this population. This study determined cut-points for the newly developed Cancer Distress Scales (CDS)-AYA. Methods: The CDS-AYA is a new patient-reported outcomes measure that comprises five independently functioning scales, including the following: Impact of Cancer (12 items), Physical (12 items), Emotional (11 items), Cognitive (8 items), and Cancer Worry (5 items). Canadian AYA with cancer 15-39 years of age completed the CDS-AYA and the Hospital Anxiety and Depression Scale (HADS), as part of the CDS-AYA field test. Only patients who had completed responses to the CDS-AYA and HADS were included in these analyses. Receiver operating characteristic (ROC) curve analysis was used to generate cut-points for five CDS-AYA scales based on distress defined by the HADS anxiety and HADS depression scale. Results: In total 453 of 515 respondents had complete data for the CDS-AYA and HADS were included in analyses. Area under the curve (AUC) in the ROC analyses ranged from 0.75 to 0.85. The CDS-AYA Emotional scale had the greatest AUC. The cutoff value for the Emotional scale was 27 based on the HADS anxiety scores (78.3% and 78.9%). Conclusions: The five CDS-AYA scales had fair to good accuracy when classifying the none/low and moderate/severe distress categories based on HADS anxiety and depression scales. For screening purposes, it is recommended that the Emotional scale or Impact of Cancer scale be utilized.

Objectives: To assess the quality and content of Internet information about cancer from the perspectives of adolescents with cancer (AWC), their parents and healthcare professionals (HCP)., Methods: Key words relevant to pediatric cancer were searched across 6 search engines. Quality of information was appraised using the DISCERN tool. Website content completeness, accuracy, readability, cultural sensitivity, and desirability were assessed., Results: Only 29 websites had DISCERN scores above 50 (indicating fair quality; mean 55.76 ± 8.23, range 42.50-70.5). The majority of sites targeted parents and only four (14%) were specific to AWC. Overall completeness of the sites was rated 11.46 out of 20 (± 3.60; range 4-17.5) and accuracy was rated 4/4, indicating high accuracy with moderate completeness. The average SMOG score was 11.87 (± 2.51, range 7.7-18.67) and the Flesch Reading Ease score was 57.44 (± 16.94, range 9.1-92.4) indicating that the material was too difficult to read. The average cultural sensitivity scores for the Format, Written message and Visual material scales were 3.08/4 (± 0.53, range 2-4), 3.48/4 (± 0.41, range 2.6-4) and 2.84/4 (± 1.03, range 0-4) indicating the websites were adequately culturally sensitive. On Average, websites had 4/21 features from the desirability checklist, indicating the sites had low desirability., Conclusion: Given the paucity of high quality Internet health information at an appropriate reading level for AWC there is a critical need for HCP's to develop Internet programs to meet their unique needs., (Copyright © 2011 Wiley-Liss, Inc.)