Young Survivors at KSA: registry for standardised assessment of long-term and late-onset health events in survivors of childhood and adolescent cancer—a study protocol

IntroductionA high proportion of survivors of childhood and adolescent cancer experience chronic medical conditions — late effects. Most studies on late effects have a retrospective or questionnaire-based design, which leads to unavoidable limitations such as missing data or different severity coding and grading of late effects. We, therefore, need prospective data, including standardised severity coding and grading. ‘Young Survivors at KSA’ aims to close this gap by assessing frequency, severity, risk factors and longitudinal changes of late effects in childhood cancer survivors prospectively and in a standardised way.Methods and analysisWithin the ‘Young Survivors at KSA’ registry, we collect data from regular follow-up visits in a comprehensive database prospectively and repeatedly from start of the study and retrospectively at most until January 2016. We classify and grade the severity of late effects according to the Common Terminology Criteria for Adverse Events version 4.0 modified by Hudson et al. The outcome variables correspond to results from risk-stratified organ examinations, performed according to the Children’s Oncology Group guidelines version 5.0 and the recommendations by the International Guideline Harmonization Group. We collect the exposure variables from the patients’ medical history, including detailed information on cancer diagnosis and treatment. We analyse the data in an exposure-driven and organ system-driven approach. We start recruitment with patients treated at the Kantonsspital Aarau, Switzerland. However, our design allows the inclusion of additional national centres later.Ethics and dissemination‘Young Survivors at KSA’ is approved by the Ethikkommission Nordwest- und Zentralschweiz, reference number AO_2020–00012. The results of this study will be presented at scientific meetings, including meetings with childhood cancer survivors and published in peer-reviewed and if possible open access journals. New insights gained from the study will be used directly in clinical practice.Trial registration numberClinicalTrials.gov NCT04811794; https://clinicaltrials.gov/ct2/show/study/NCT04811794

How information affects attributions for ambiguous behaviours resulting from stroke

<p>Research has shown that when people see young survivors of stroke, they often misattribute the person’s symptoms to other factors (Wainwright et al., 2013). Consequently, these stroke survivors may suffer feelings of resentment towards, and from their acquaintances. They may also struggle to obtain or retain a job. This thesis examines whether these misattributions for stroke survivors’ symptoms are affected by the information people have about the stroke survivor and the rapidity of the change in their behaviours. Experiment 1 investigated if the stroke survivor’s age (72, 32 or unstated) and the level of information (no information, implied stroke or explicit stroke) for their behaviours influenced people’s attributions. Experiment 1 showed that people attributed the behavioural changes to factors other than stroke when no additional information is present, and they attributed the behaviours to stroke when stroke was explicitly described. When stroke was implied, participants rated stroke as the best explanation but only when the target person was 72. Experiment 2 manipulated the rapidity of the stroke survivor’s behavioural changes to assess the effect on attributions. Experiment 2 showed that people attributed the behaviours to stroke more if only one week had passed, and if the target person was 72, but not when he was 32. It was concluded that young stroke survivors may need to disclose their stroke in order for others to correctly attribute their behaviours, as this could improve their rehabilitation.</p>

How information affects attributions for ambiguous behaviours resulting from stroke

<p>Research has shown that when people see young survivors of stroke, they often misattribute the person’s symptoms to other factors (Wainwright et al., 2013). Consequently, these stroke survivors may suffer feelings of resentment towards, and from their acquaintances. They may also struggle to obtain or retain a job. This thesis examines whether these misattributions for stroke survivors’ symptoms are affected by the information people have about the stroke survivor and the rapidity of the change in their behaviours. Experiment 1 investigated if the stroke survivor’s age (72, 32 or unstated) and the level of information (no information, implied stroke or explicit stroke) for their behaviours influenced people’s attributions. Experiment 1 showed that people attributed the behavioural changes to factors other than stroke when no additional information is present, and they attributed the behaviours to stroke when stroke was explicitly described. When stroke was implied, participants rated stroke as the best explanation but only when the target person was 72. Experiment 2 manipulated the rapidity of the stroke survivor’s behavioural changes to assess the effect on attributions. Experiment 2 showed that people attributed the behaviours to stroke more if only one week had passed, and if the target person was 72, but not when he was 32. It was concluded that young stroke survivors may need to disclose their stroke in order for others to correctly attribute their behaviours, as this could improve their rehabilitation.</p>

Navigating a Limited ‘World of Possibilities’: Refugee Journeys of Jewish Children and Youth in the Aftermath of the Holocaust

What can historians bring to the current discussion about refugee journeys? Building on the example of a group of 1,115 young Jewish survivors who went to Canada in the immediate aftermath of the Holocaust, this article addresses two essential questions: why did they leave and why did they go to Canada and not elsewhere? Drawing on Nicolas Mariot and Claire Zalc's notion of a ‘world of possibilities’ and taking into consideration age as a category of analysis, I argue that one can formulate hypotheses about these journeys by, first, mapping what was and was not available to the young survivors at different moments of their displacement and, second, by looking at how individuals navigated these possibilities and constraints. In so doing, this article aims to nuance approaches that uncritically emphasise agency, and therefore erase the specificity of young people's experiences of displacement.

Cannabidiol (CBD) use among cancer survivors.

12096 Background: Cannabidiol (CBD) is a non-psychoactive component of cannabis touted for various therapeutic effects. The Federal Drug Agency has only approved one prescription CBD product for treatment of severe epilepsy. On December 17, 2020 the Federal Trade Commission announced legal consequences for deceptively marketed CBD products in the rapidly expanding market of various CBD products; the products’ unsupported claims included CBD as a cancer treatment. Little is known about survivors use of CBD. This study explores the prevalence and nature of CBD use by cancer survivors. Methods: A link to an anonymous, electronic survey was posted on the Levine Cancer Institute and SherryStrong (Martin Truex Jr. Foundation: philanthropy for ovarian cancer) Twitter and Facebook social media platforms. Data were managed in REDCap, a secure, web-based, electronic data capture tool. Survey responses were summarized and described with frequencies and compared using Fisher’s Exact tests; p < 0.1 was considered statistically significant. Results: N = 295 self-selected respondents were White (95%), female (86%), middle aged (45-64 years) (58%) and in the US (95%). Ninety percent indicated current (85%) or past (15%) use of CBD product; a third of these participants (N = 102) identified as cancer survivors. Gynecologic (31%) and breast (30%) cancers were the most recorded malignancies, and 38% report active treatment. Most survivors indicated using CBD products daily (77%) for a year or less (79%) and spent @$30 a week on products (70%). Common uses for CBD were easing pain (66%), anxiety (50%), and sleep (50%)—14% reported treating or preventing cancer. 41% learned about CBD from family/friends, fewer learned from the Internet (21%) or local store (11%). Only 12% received information from a physician. Liquid drops (58%) and topicals (19%) were popular products and reported side effects were sparse—sedation and/or euphoria were indicated by 10% and 2%, respectively. Over 82% of cancer survivors indicated that CBD product helped their conditions. CBD use to ease anxiety and stress declined with age; 71% of young survivors (aged 18-44) sought anxiety relief versus 45% and 36% of middle age (aged 45-64) and seniors (aged 65+), respectively (p = 0.05), and 58% of young survivors pursued stress relief versus 39% of middle age and 21% of seniors (p = 0.08). More young (25%) and middle age (37%) survivors indicated spending over $30 on products weekly than seniors (7%) (p = 0.08). No differences were seen in CBD use between cancer survivors by gender or treatment status. Conclusions: Cancer survivors commonly use CBD, yet infrequently under the guidance of a physician. Survivors largely rely on word of mouth and internet information about CBD. Despite lack of standardization of production and labeling of CBD products, the majority of patients reported positive improvements in symptoms. Future research should explore strategies to educate cancer patients and providers in safe CBD use.

93 Virtual Burn Camp 2020 vs. In-Person Burn Camp - Did It Hit the Mark

Introduction Burn camps have served burn-injured youth in the U.S. for over 35 years. Camp is a rehabilitation program that has been recognized as an important part of young survivors’ recovery. The 2020 global pandemic made an in-person camp impossible, so volunteers rallied to provide a virtual experience. Registered campers received a “Camp in a Box” filled with activities, art supplies, a camp tee-shirt, and snacks to enjoy at Virtual Burn Camp (VBC). Participants connected with campers and counselors online. This study sought to determine how youth viewed VBC compared to in-person camp, how the pandemic was affecting their emotional status and whether VBC helped them. Methods The study asked participants to rate survey items regarding levels of comfort, connection, and support at VBC vs. in-person camp on a 4-point scale from 1. NO! 2. no 3. yes 4. YES! Multiple choice questions such as My favorite thing about virtual camp, and “Things I missed most about regular burn camp” - choose 2. General stress & anxiety levels related to Covid-19 were assessed, as well as if VBC helped to reduce their anxiety/stress levels. Results Pediatric burn survivors (n=77) participating in 2 virtual camps, demographic’s included mean age 13.8 years, male (n=39%), female (n=61%), visible scars (74%) vs. (10%) hidden scars with the majority representing racial/ethnic minorities (65%) vs. white (35%). Campers reported feeling more connected at in-person camp (84%) vs. VBC (38%). Feeling supported was higher at regular burn camp (84%), but the majority (76%) also claimed feeling supported at VBC. Camper’s favorite things about VBC were Camp in a Box (66%), Being Part of the Burn Community (51%), and Seeing Counselors (47%). Things missed most about regular burn camp were seeing Friends (83%) and Counselors (61%). Respondents reported high Covid-19 related stress/anxiety levels (66%) and (88%) said that VBC reduced their anxiety/stress. Top benefits included feeling Happy (48%) and Thankful (32%). Conclusions Pediatric burn survivors place a high value on their burn community involvement. Though not the preferred camp method, the VBC earned high marks for camper’s improved emotional status and for reducing their Covid-19 stress and anxiety levels. The program succeeded in helping Virtual Campers feel supported and provided an important venue for connecting them with their burn-injured peers and camp counselors.