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Background Objectives Methods Results Conclusions Cancer is the leading cause of death in children aged 1–14 and the second in 15‐19‐year‐old adolescents in Spain. The Paediatric Population‐Based Cancer Registry of the Community of Madrid was created to monitor its incidence and survival.This study presents the incidence of childhood and adolescent cancer (0–19 years) in Madrid at a population level by sex, age group, type of tumour and stage at diagnosis.This study was a retrospective analysis of the total number of cases registered in the Paediatric Population‐Based Cancer Registry of the Community of Madrid. The registry employs passive and active case finding: by cross‐referencing hospital discharge data, primary healthcare data, mortality data and administrative information; and by validation of all potential incident cases through a review of electronic medical charts. All new diagnoses of malignant neoplasms, non‐malignant neoplasms of the Central Nervous System, and uncertain and in situ neoplasms of the bladder, identified in 2015–2018 in individuals under age 20 residing in Madrid, were included. Patient information was collected along with tumour characteristics, including stage at diagnosis according to the Toronto Childhood Cancer Stage Guidelines. Age‐specific and age‐standardised incidence rates were computed with 95% confidence intervals (CI).A total of 1002 tumours were registered in 5,269,524 person‐years, yielding an age‐standardised rate of 192.7 (95% CI 184.3, 201.4) cases per million person‐years. Male/female rate ratio was 1.1. The most common cancers across all ages comprised CNS tumours, leukaemias and lymphomas (primarily Hodgkin): 45.5 (95% CI 39.9, 51.7), 41.1 (95% CI 35.7, 47.1) and 35.8 (95% CI 30.9, 41.3) cases per million person‐years, respectively. The proportion of metastatic tumours at diagnosis was similar for ages 0–14 (18.6%) and 15–19 (18.7%).This study provides a comprehensive understanding of childhood and adolescent cancer incidence in Madrid. The registry provides high‐quality data and consolidates epidemiological surveillance of cancer in the region. [ABSTRACT FROM AUTHOR]

Objective: Although the relative survival rate of childhood cancer has increased substantially in recent years, the pursuit of successful outcomes is often accompanied by negative impacts on pediatric and adolescent cancer survivors and their parents' physical and psychological well‐being. However, little is known about their experiences during the period of cancer survivorship. This study aimed to gain an understanding of the experience of cancer survivorship among pediatric and adolescent cancer survivors and their parents. Methods: This study utilized a descriptive qualitative study employing the photovoice design. From September 2022 to March 2023, 17 pediatric and adolescent cancer survivors (9–18 years), who had completed active treatment at least 6 months before recruitment, participated in this study. A total of 217 photographs submitted by survivors and their parents and the interview data, were thematically analyzed to identify themes and subthemes. Results: The analysis revealed five prominent themes: indelible marks, struggling with late effects, striving to return to normalcy, the strength of support, and living in the moment and hope for the future. Conclusion: The findings shed light on the experiences of pediatric and adolescent cancer survivors and their parents throughout the cancer journey, elucidating the influence on both negative and positive aspects. Additionally, the study highlighted that photovoice facilitated self‐reflection, the discovery of values, and the recognition of strengths and can be a therapeutic strategy for pediatric and adolescent cancer survivors and their parents in further research. [ABSTRACT FROM AUTHOR]

Abstract Introduction The SARS-CoV-2 (COVID-19) pandemic has strained healthcare systems and presented unique challenges for children requiring cancer care, particularly in low- and middle-income countries. This study aimed to assess the impact of the COVID-19 pandemic on access to cancer care for children and adolescents in Northern Tanzania. Methods In this cross-sectional study, we assessed the demographic and clinical characteristics of 547 pediatric and adolescent cancer patients (ages 0–19 years old) between 2016 and 2022 using the population-based Kilimanjaro Cancer Registry (KCR). We categorized data into pre-COVID-19 (2016–2019) and COVID-19 (2020–2022) eras, and performed descriptive analyses of diagnostic, treatment, and demographic information. A secondary analysis was conducted on a subset of 167 patients with stage of diagnosis at presentation. Results Overall admissions nearly doubled during the pandemic (n = 190 versus 357). The variety of diagnoses attended at KCMC increased during the pandemic, with only five groups of diseases reported in 2016 to twelve groups of diseases in 2021. Most patients were diagnosed at a late stage (stage III or IV) across eras, with the proportion of under-five years old patients increasing late-diagnoses from 29.4% (before the pandemic), 52.8% (during the pandemic), when compared to the overall cohort. Around 95% of children in this age category reported late-stage diagnosis during the pandemic. Six out of the twelve cancer site groups also reported an increase in late-stage diagnosis. During the pandemic, the proportion of children receiving surgery increased from 15.8 to 30.8% (p

Introduction: The SARS-CoV-2 (COVID-19) pandemic has strained healthcare systems and presented unique challenges for children requiring cancer care, particularly in low- and middle-income countries. This study aimed to assess the impact of the COVID-19 pandemic on access to cancer care for children and adolescents in Northern Tanzania. Methods: In this cross-sectional study, we assessed the demographic and clinical characteristics of 547 pediatric and adolescent cancer patients (ages 0–19 years old) between 2016 and 2022 using the population-based Kilimanjaro Cancer Registry (KCR). We categorized data into pre-COVID-19 (2016–2019) and COVID-19 (2020–2022) eras, and performed descriptive analyses of diagnostic, treatment, and demographic information. A secondary analysis was conducted on a subset of 167 patients with stage of diagnosis at presentation. Results: Overall admissions nearly doubled during the pandemic (n = 190 versus 357). The variety of diagnoses attended at KCMC increased during the pandemic, with only five groups of diseases reported in 2016 to twelve groups of diseases in 2021. Most patients were diagnosed at a late stage (stage III or IV) across eras, with the proportion of under-five years old patients increasing late-diagnoses from 29.4% (before the pandemic), 52.8% (during the pandemic), when compared to the overall cohort. Around 95% of children in this age category reported late-stage diagnosis during the pandemic. Six out of the twelve cancer site groups also reported an increase in late-stage diagnosis. During the pandemic, the proportion of children receiving surgery increased from 15.8 to 30.8% (p < 0.001). Conclusion: Childhood and adolescent cancer care changed in Northern Tanzania during the COVID-19 pandemic, with increased late-stage diagnoses presentations among younger patients and the increased use of surgical therapies in the context of a growing practice. Understanding the impact of the COVID-19 pandemic on pediatric and adolescent cancer care can help us better adapt healthcare systems and interventions to the emerging needs of children and adolescents with cancer in the midst of a health crisis. [ABSTRACT FROM AUTHOR]

Introduction: Initially, bibliotherapy was used to address emotional issues in adults. However, in the second half of the 19th century, its theoretical and practical foundations expanded significantly. Nowadays, bibliotherapy is recognized as an effective strategy for treating clinical problems. The purpose of this study is to examine the impact of an experimental Bibliotherapy for resilience, and so investigate the effect of twelve archetypes on teenagers with cancer at Behsat Hospital, Hamedan. Methodology: This research employed a semi-experimental design, utilizing a pre-test and post-test approach. The target population consisted of teenagers aged 10 to 14 undergoing chemotherapy for cancer at Besat Hospital in Hamedan. A sample of 30 cancer-afflicted teenagers was randomly selected, ensuring homogeneity in terms of age, duration of illness, socioeconomic status, and other variables. The sample was divided into two groups: a control group of 15 individuals and an experimental group of 15 individuals. The research utilized two questionnaires to measure resilience (Conner and Davidson, 2003) and life expectancy (Schneider, 2006). The resilience questionnaire had 25 items that are scored on a five-level Likert scale from completely agree to completely disagree. The validity of this questionnaire was confirmed by six experts and its reliability was obtained using Cronbach's alpha coefficient of 0.89. The life expectancy questionnaire has 12 items and 3 components and is implemented as a self-assessment. Out of these 12 items, four items measure operative thinking, four items measure strategic thinking, and four items contain deviant questions. This questionnaire includes two subscales of factor and strategy, and its purpose is to evaluate the level of life expectancy in people. The scoring method of this questionnaire is based on a five-level Likert scale The experimental group participated in eight sessions of bibliotherapy intervention using a storytelling skill plan. The therapist researchers used three books as guides: "Living with Chronic Pain: An Acceptance-Based Approach" and its therapist's guide and patient workbook by Kevin Wells and John Sorrell (2013), "Pain Control Practical Guide: A Positive Attitude to Adapting to Chronic Pain" by Michael Nicholas (2014), and "The Hero's Awakening" by Patricia Addson (2014). Data analysis was conducted using independent t-tests and analysis of covariance in SPSS statistical software. Findings: The results of the independent t-tests revealed a significant difference in mean scores for resilience and life expectancy between the control and experimental groups. Moreover, the bibliotherapy intervention had a 43.6 percent effect on life expectancy and a 64.1 percent effect on resilience among teenagers with cancer. [ABSTRACT FROM AUTHOR]

Cancer statistics for adolescents and young adults (AYAs) (aged 15-39 years) are often presented in aggregate, masking important heterogeneity. The authors analyzed population-based cancer incidence and mortality for AYAs in the United States by age group (ages 15-19, 20-29, and 30-39 years), sex, and race/ethnicity. In 2020, there will be approximately 89,500 new cancer cases and 9270 cancer deaths in AYAs. Overall cancer incidence increased in all AYA age groups during the most recent decade (2007-2016), largely driven by thyroid cancer, which rose by approximately 3% annually among those aged 20 to 39 years and 4% among those aged 15 to 19 years. Incidence also increased in most age groups for several cancers linked to obesity, including kidney (3% annually across all age groups), uterine corpus (3% in the group aged 20-39 years), and colorectum (0.9%-1.5% in the group aged 20-39 years). Rates declined dramatically for melanoma in the group aged 15 to 29 years (4%-6% annually) but remained stable among those aged 30 to 39 years. Overall cancer mortality declined during 2008 through 2017 by 1% annually across age and sex groups, except for women aged 30 to 39 years, among whom rates were stable because of a flattening of declines in female breast cancer. Rates increased for cancers of the colorectum and uterine corpus in the group aged 30 to 39 years, mirroring incidence trends. Five-year relative survival in AYAs is similar across age groups for all cancers combined (range, 83%-86%) but varies widely for some cancers, such as acute lymphocytic leukemia (74% in the group aged 15-19 years vs 51% in the group aged 30-39 years) and brain tumors (77% vs 66%), reflecting differences in histologic subtype distribution and treatment. Progress in reducing cancer morbidity and mortality among AYAs could be addressed through more equitable access to health care, increasing clinical trial enrollment, expanding research, and greater alertness among clinicians and patients for early symptoms and signs of cancer. Further progress could be accelerated with increased disaggregation by age in research on surveillance, etiology, basic biology, and survivorship.

Purpose: Little is known regarding long-term neurocognitive outcomes in osteosarcoma and Ewing sarcoma (EWS) survivors despite potential risk factors. We evaluated associations among treatment exposures, chronic health conditions, and patient-reported neurocognitive outcomes in adult survivors of childhood osteosarcoma and EWS. Methods: Five-year survivors of osteosarcoma (N = 604; median age 37.0 years) and EWS (N = 356; median age 35.0 years) diagnosed at < 21 years from 1970 to 1999, and 697 siblings completed the Childhood Cancer Survivor Study Neurocognitive Questionnaire and reported chronic health conditions, education, and employment. Prevalence of reported neurocognitive difficulties were compared between diagnostic groups and siblings. Modified Poisson regression identified factors associated with neurocognitive difficulties. Results: Osteosarcoma and EWS survivors, vs. siblings, reported higher prevalences of difficulties with task efficiency (15.4% [P = 0.03] and 14.0% [P = 0.04] vs. 9.6%, respectively) and emotional regulation (18.0% [P < 0.0001] and 15.2% [P = 0.03] vs. 11.3%, respectively), adjusted for age, sex, and ethnicity/race. Osteosarcoma survivors reported greater memory difficulties vs. siblings (23.5% vs. 16.4% [P = 0.01]). Comorbid impairment (i.e., ≥ 2 neurocognitive domains) was more prevalent in osteosarcoma (20.0% [P < 0.001]) and EWS survivors (16.3% [P = 0.02]) vs. siblings (10.9%). Neurological conditions were associated with worse task efficiency (RR = 2.17; 95% CI = 1.21–3.88) and emotional regulation (RR = 1.88; 95% CI = 1.01–3.52), and respiratory conditions were associated with worse organization (RR = 2.60; 95% CI = 1.05–6.39) for EWS. Hearing impairment was associated with emotional regulation difficulties for osteosarcoma (RR = 1.98; 95% CI = 1.22–3.20). Patient report of cognitive difficulties was associated with employment but not educational attainment. Conclusions: Survivors of childhood osteosarcoma and EWS are at increased risk for reporting neurocognitive difficulties, which are associated with employment status and appear related to chronic health conditions that develop over time. Implications for Cancer Survivors: Early screening, prevention, and treatment of chronic health conditions may improve/prevent long-term neurocognitive outcomes. [ABSTRACT FROM AUTHOR]

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Abstract Background Since pediatric cancer drug development is a global enterprise, we sought to provide an overview of the landscape of intercontinental clinical trials in pediatric oncology opened over the last decade. Methods ClinicalTrials.gov was systematically searched to identify all clinical therapeutic trials which opened between 2010 and 2020 and recruited pediatric patients (

Around 70 children and adolescents under the age of 20 are diagnosed with cancer in Slovenia every year. Incidence is rising over time, but survival is improving significantly, resulting in a decrease in mortality and an increase in the number of survivors who need lifelong follow-up because of the risk of late effects. The Slovenian Cancer Registry's standard dataset contains data that is too scarce for some in-depth studies on childhood and adolescent cancers and late effects in survivors. At the Cancer Registry, we have therefore started activities in 2020 to establish a clinical registry of childhood cancer and late effects of childhood cancer treatment, which acts as a population-based registry with a highly expanded dataset. Its primary purpose is to systematically record the late effects of cancer treatment. It consists of two modules. The first is managed by the Cancer Registry and, using an active registration approach through access to the electronic patient records of the Ljubljana Paediatric Clinic and other institutions, it allows for a detailed inventory of the disease (in line with international rules), primary treatment (operations, cumulative doses of individual therapeutics, cumulative radiation doses, haematopoietic stem cell transplantation and other treatments, side effects of treatment) and recurrences, where the treatment is registered to the same level of detail as the primary treatment. The first module already contains data for the incidence year 2019, with accelerated registration of subsequent years to follow. The second module will be operated by the Late effects unit of the Institute of Oncology Ljubljana, where all collected data will be accessible during the patient's visit, and where visits, tests performed, questionnaires completed and late effects identified can be prospectively recorded. The second module is undergoing testing for user-friendliness, and we are developing automation of the treatment summary (survivorship passport) and follow-up recommendations.

Abstract Background Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. Methods We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O’Malley’s six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. Discussion This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects. Systematic review registration Open Science Framework (osf/io/yc4wt)

The field of pediatric exercise oncology explores the relationships between physical activity (PA), including exercise, and a range of outcomes among children and adolescents affected by cancer. Although PA is safe and beneficial for this population, several important gaps in knowledge and practice remain. In this article, we describe research and innovation needs that were developed with a team of international experts and relevant literature, a series of online surveys, and an in-person meeting. Addressing these needs will contribute valuable knowledge and practice outputs to advance this field, ultimately enabling a greater number of children and adolescents affected by cancer to realize the benefits of moving more.

Background: Since pediatric cancer drug development is a global enterprise, we sought to provide an overview of the landscape of intercontinental clinical trials in pediatric oncology opened over the last decade. Methods: ClinicalTrials.gov was systematically searched to identify all clinical therapeutic trials which opened between 2010 and 2020 and recruited pediatric patients (<18 years) with cancer. Results: Over the last 10 years, 295 (8.7%) of 3383 therapeutic pediatric cancer trials were international and 182 (5.4%) were intercontinental. Most intercontinental trials were phase‐1 or 2, with 25% late‐phase, 65% were sponsored by industry, and North America was involved in 92%. Industry‐sponsored proportionally more phase‐1 trials than academia (41% vs. 25%); conversely, academia sponsored more phase‐2 and late‐phase trials (39% and 31% vs. 36% and 21%, respectively) (p = 0.020). North America–Europe collaboration was predominantly industry sponsored as opposed to North America–Oceania and Europe–Oceania collaboration, more frequently academic (p < 0.0001). Most late‐phase trials (18/20, 90%) focusing on pediatric malignancies were conducted by academic sponsors and 10 of these were conducted by Children's Oncology Group (COG)/National Cancer Institute in the United States and Oceania. There was no significant increase over time of intercontinental trials and a trend for a reduction in academic trials. Conclusions: Despite the relative rarity of childhood malignancies, especially within molecular subtypes, only 5.4% of pediatric cancer trials were intercontinental. The number of intercontinental trials remains small, with no significant increase over the last decade. The ACCELERATE International Collaboration Working Group aims to identify existing hurdles and propose solutions to improve intercontinental collaboration in clinical research for the benefit of children and adolescents with cancer. [ABSTRACT FROM AUTHOR]

Objective: Adolescents' cancer‐related distress is more complex, severe, and long‐lasting than that of children and adults. Parents adopt an active role in supporting their adolescent, reporting that adolescent cancer‐related distress is the most problematic symptom parents experience. Research has predominantly focused on exploring adolescents' experiences of cancer‐related distress, with little attention to how their parents experience their adolescent's cancer‐related distress. Therefore, we aimed to explore parents' experiences of distress within the context of parenting an adolescent with cancer‐related distress during or immediately subsequent to active treatment. Methods: A total of 21 semi‐structured interviews were conducted face‐to‐face or via telephone, with parents of adolescents aged 12–18 years from south‐west England. Inductive reflexive thematic analysis was used to analyse the data. Results: Three themes were generated: "The contagion of distress", "Navigating breaking point" and "Developmental disruption". Parental distress transcended from adolescent cancer‐related distress, eliciting uncertainty and challenging parenting limits. Parental distress was perpetuated by feelings that their adolescent had missed out on "normal" adolescence during and just after active treatment. Conclusion: Parental distress reflected the multi‐faceted nature of their adolescent's cancer‐related distress. Findings advocate the importance of providing a parental voice within adolescent oncology populations. Developing tailored interventions to address parental distress are suggested. [ABSTRACT FROM AUTHOR]

Background: Cancer diagnosis in childhood or adolescence impacts significantly on school attendance, experience and educational outcomes. While there is longstanding recognition in clinical practice that these effects span the whole illness trajectory and continue beyond treatment completion, further clarity is required on the specific barriers and facilitators to education during cancer treatment and beyond, as well as on the experiences of children and adolescents across the full range of education settings (hospital, home, virtual, original school of enrolment), in order to determine which interventions are successful in improving access and experience from their perspective. The aim of this review is to identify what is known from the existing literature about access to and experience of education for children and adolescents with cancer during and post treatment. Methods: We have planned a scoping literature review searching the following databases from inception onwards: MEDLINE (Ovid), Embase and Embase Classic, Web of Science Core Collection, Education Resources Index, Sociological Abstracts, APA PsycINFO, SCOPUS, CINAHL Plus, Emcare and The Cochrane Library. In addition, DARE, conference abstracts, key journals, and institutional websites will be searched. Arksey and O'Malley's six-step process will be followed, including a consultation exercise. Studies, reports and policies from any country providing care and treatment for children and adolescents with cancer published in English will be considered eligible for inclusion. Two reviewers will independently screen all citations, full-text articles and abstract data. A narrative summary of findings will be conducted. Data analysis will involve quantitative (e.g., frequencies) and qualitative (e.g., content and thematic analysis) methods. Discussion: This is a timely examination given the increased incidence of childhood cancer, more intensive treatment regimens and improved survival rates for childhood cancer. The inclusion of a substantive consultation exercise with families and professionals will provide an important opportunity to examine the scoping review outputs. Findings will assist the childhood cancer community in developing a comprehensive evidence-based understanding of a significant associated bio-psychosocial impact of cancer diagnosis and treatment and will form the first step towards developing effective interventions and policies to mitigate identified detrimental effects. Systematic review registration: Open Science Framework (osf/io/yc4wt) [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to disclose the variability of pathways currently taken in the treatment of adolescent patients from diagnosis to final follow-up with a view to developing a more homogenous system. Patients & methods: A cross-sectional, observational and retrospective study of the cancer diagnosis and assignment to medical care teams in adolescent patients (12-20 years) from January 2008 to December 2018 was conducted. A total of 345 adolescent patients aged between 12 and 20 years, diagnosed with cancer and treated at Hospital Clinico Universitario Virgen de la Arrixaca were included. Results: CNS tumors, followed by leukemia were the most frequent tumors. At the time of diagnosis, the highest incidences of patients were assisted in the pediatrics service adult oncology service (21.7%) and hematology (11%). Conclusion: Our aim is to highlight the need for a better transition for patients from pediatric to adult oncology and hematology services. [ABSTRACT FROM AUTHOR]

Purpose: Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors' unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship. Methods: Semi-structured interviews (45–60 min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review. Results: Participants (N = 25) averaged 29 years old (SD = 6.2; range, 15–39) were primarily White and well educated, and averaged 5.81 years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed. Conclusion: Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources. [ABSTRACT FROM AUTHOR]

Rhabdoid tumor predisposition syndrome (RTPS) is a rare disorder associated with malignant rhabdoid tumor of the kidney (RTK), atypical teratoid rhabdoid tumor (ATRT), and/or other extracranial, extrarenal rhabdoid tumors (EERT), and these pediatric malignancies are difficult to treat. Presently, most of the information regarding clinical manifestations, treatment, and outcomes of rhabdoid tumors comes from large data registries and case series. Our current understanding of treatments for patients with rhabdoid tumors may inform how we approach patients with RTPS. In this manuscript, we review the genetic and clinical features of RTPS and, using known registry data and clinical reports, review associated tumor types ATRT, RTK, and EERT, closing with potential new approaches to treatment. We propose collaborative international efforts to study the use of SMARC (SWI/SNF-related, matrix-associated, actin-dependent regulator of chromatin)-targeting agents, high-dose consolidative therapy, and age-based irradiation of disease sites in RTPS., (© 2024 Wiley Periodicals LLC.)

IntroductionCancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes.MethodsIndividuals diagnosed in 2007-08 and age 15-39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed.Results525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p

The field of pediatric exercise oncology explores the relationships between physical activity (PA), including exercise, and a range of outcomes among children and adolescents affected by cancer. Although PA is safe and beneficial for this population, several important gaps in knowledge and practice remain. In this article, we describe research and innovation needs that were developed with a team of international experts and relevant literature, a series of online surveys, and an in-person meeting. Addressing these needs will contribute valuable knowledge and practice outputs to advance this field, ultimately enabling a greater number of children and adolescents affected by cancer to realize the benefits of moving more. [ABSTRACT FROM AUTHOR]

Objective: With improving survival rates, it is becoming increasingly important to understand the psychological aspect and needs of young cancer patients and survivors. Our goal was to describe the self‐reported levels of psychological distress, subjective illness experience and needs of young Slovenian cancer patients and survivors. Methods: Seventy‐nine participants, aged 19–39 years, answered questionnaires about anxiety, depression, mental defeat, cancer worry and their experience of learning the diagnosis and being treated. We used visualisations to demonstrate the relationship between anxiety and depression. The qualitative responses were summarised using a content analysis approach. Results: Twenty‐eight (35%) participants scored in the clinical range for anxiety and fifteen (19%) for depression. Cancer‐related worry was common (85% reported at least one worry). Mental defeat was positively associated with measures of psychological distress. Those who felt negative about learning their diagnosis emphasised the need for more time, empathy and dignity. Psychological support during illness was seen as crucial. Conclusion: Anxiety and depression remain a problem for a subset of patients. Medical professionals working with young people with cancer should encourage a warm atmosphere as they attend to patients' needs and concerns. [ABSTRACT FROM AUTHOR]

Background: Because of the global spread of coronavirus disease 2019 (COVID-19), oncology departments across the world have rapidly adapted their cancer care protocols to balance the risk of delaying cancer treatments and the risk of COVID-19 exposure. COVID-19 and associated changes may have an impact on the psychosocial functioning of patients with cancer and survivors. This study was designed to determine the impact of the COVID-19 pandemic on young people living with and beyond cancer.Methods: In this cross-sectional study, 177 individuals, aged 18 to 39 years, were surveyed about the impact of COVID-19 on their cancer care and psychological well-being. Participants also reported their information needs with respect to COVID-19. Responses were summarized with a content analysis approach.Results: This was the first study to examine the psychological functioning of young patients and survivors during the first weeks of the COVID-19 pandemic. A third of the respondents reported increased levels of psychological distress, and as many as 60% reported feeling more anxious than they did before COVID-19. More than half also wanted more information tailored to them as young patients with cancer.Conclusions: The COVID-19 pandemic is rapidly evolving and changing the landscape of cancer care. Young people living with cancer are a unique population and might be more vulnerable during this time in comparison with their healthy peers. There is a need to screen for psychological distress and attend to young people whose cancer care has been delayed. As the lockdown begins to ease, the guidelines about cancer care should be updated according to this population's needs. [ABSTRACT FROM AUTHOR]

Abstract Background Transforming spatial data from one scale to another is a challenge in geographic analysis. As part of a larger, primary study to determine a possible association between travel barriers to pediatric cancer facilities and adolescent cancer mortality across the United States, we examined methods to estimate mortality within zones at varying distances from these facilities: (1) geographic centroid assignment, (2) population-weighted centroid assignment, (3) simple areal weighting, (4) combined population and areal weighting, and (5) geostatistical areal interpolation. For the primary study, we used county mortality counts from the National Center for Health Statistics (NCHS) and population data by census tract for the United States to estimate zone mortality. In this paper, to evaluate the five mortality estimation methods, we employed address-level mortality data from the state of Georgia in conjunction with census data. Our objective here is to identify the simplest method that returns accurate mortality estimates. Results The distribution of Georgia county adolescent cancer mortality counts mirrors the Poisson distribution of the NCHS counts for the U.S. Likewise, zone value patterns, along with the error measures of hierarchy and fit, are similar for the state and the nation. Therefore, Georgia data are suitable for methods testing. The mean absolute value arithmetic differences between the observed counts for Georgia and the five methods were 5.50, 5.00, 4.17, 2.74, and 3.43, respectively. Comparing the methods through paired t-tests of absolute value arithmetic differences showed no statistical difference among the methods. However, we found a strong positive correlation (r = 0.63) between estimated Georgia mortality rates and combined weighting rates at zone level. Most importantly, Bland–Altman plots indicated acceptable agreement between paired arithmetic differences of Georgia rates and combined population and areal weighting rates. Conclusions This research contributes to the literature on areal interpolation, demonstrating that combined population and areal weighting, compared to other tested methods, returns the most accurate estimates of mortality in transforming small counts by county to aggregated counts for large, non-standard study zones. This conceptually simple cartographic method should be of interest to public health practitioners and researchers limited to analysis of data for relatively large enumeration units.

To measure parental attitudes toward fertility preservation (FP) in female adolescent cancer patients in a Middle Eastern country to understand barriers to decision-making and decisional conflicts. A questionnaire was distributed to parents of all female adolescents at a tertiary care center from February 2018 to September 2018. A total of 70 families. None. Parental attitudes toward FP. The educational level of parents was associated with the knowledge about the side effects of treatment (P <.001). FP options were not offered to parents in 60/70 (85.6%) of cases. Oocyte cryopreservation was an acceptable option for 23/70 (32.9%) of interviewed parents who agreed on collecting the oocytes using vaginal ultrasound. The fear of disrupting the hymen was the main reason for disapproval in 20/70 (28.6%) of cases. The religious preference of the family was a significant factor in the acceptance of vaginal ultrasound and vaginal oocyte retrieval. The educational level of parents, the monthly income, and the current employment status were not linearly associated with their acceptance to approve their daughters' undergoing oocyte cryopreservation through the vaginal route (χ2 = 100.651; P <.001). Parents are not aware of the effect of cancer treatment on future fertility of their daughters. Ethical, social, and religious barriers affect the decision-making for FP. However, a major interest exists among parents for FP, highlighting the importance of development of an oncofertility program, involving a multidisciplinary team to initiate proper counseling and guidance. [ABSTRACT FROM AUTHOR]

Abstract Purpose The patient–provider relationship has been understudied in adolescents with cancer. The current study describes an exploratory factor analysis of a patient–provider relationship self-report measure developed for use in adolescent oncology. Methods A self-report measure was included in an iPad/tablet survey delivered to 102 adolescent cancer patients (diagnosed between the ages of 10 and 20). Principal factor analysis with promax rotation and a three-factor structure was specified. Results The final solution identified three underlying dimensions of the patient–provider relationship—Supporting Independence (69.7% variance explained; Cronbach's α =.89), Family-Centered Com munication (50.0% variance explained; Cronbach's α =.73), and Respectful Relationships (40.1% variance; Cronbach's α =.66). Discussion The current measure highlights the unique developmental place of adolescent cancer patients in their preference for aspects of both patient-centered and family-centered care. The current analysis begins to fill the need for adolescent-tailored measurement to assess the patient–provider relationship in this population. [ABSTRACT FROM AUTHOR]

Objectives: A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care.Methods: A sample of 101 adolescent cancer patients (diagnosed 10-20 years) completed survey items concerning patient engagement, dimensions of the patient-provider relationship, cognitive development, transitional readiness, and demographic characteristics using an iPad/tablet during a routine clinic visit.Results: Patient engagement was not significantly associated with perceived quality of care (b = .02, 95% CI: -0.06, 0.11). Instead, adolescents with providers that supported their independence (b = .34, 95% CI: 0.17, 0.52) were significantly more likely to perceive higher quality care.Conclusion: Supportive patient-provider relationships are an integral part of adolescents' perceptions of quality of care. Adolescents are still gaining important skills for navigating the medical system, and the patient-provider relationship may provide an important scaffolding relationship to help adolescents build independence in their treatment experience.Practice Implications: Identifying potential mechanisms through which adolescents can provide their opinion, ask questions, and participate in their treatment plan will help in supporting adolescent independence and improve quality of care. [ABSTRACT FROM AUTHOR]

In this article, we discuss a study we conducted to examine the effects of cancer on romantic partners (i.e., boyfriends and girlfriends, social/romantic/ intimate partners) of adolescents and young adults experiencing, or who have experienced, cancer. In this hermeneutic study, we interviewed partners who were involved with an adolescent/young adult with cancer, a cancer survivor who was in a relationship during his treatment, and two healthcare professionals who have worked with these couples and witnessed many other situations of impact, effect, and repercussion. Out of this study, we suggest that partners are affected in many ways that can vary from estrangement, to termination of the relationship, to premature decisions about remaining in the relationship, to family disregard of the partner, and to disregard of the family due to influence of, or relationship with, the partner. We discuss these findings within the context of the larger picture of the psychosocial relational impact of cancer on members beyond those in the immediate and biological family. [ABSTRACT FROM AUTHOR]

The purpose of this study is to improve comprehension about how adolescents and young adults (AYA) diagnosed with cancer use the Internet and social networks to seek information about their illness and to establish relationships between them. A group of 20 AYA patients and survivors of cancer (ages 14 to 29) were interviewed from a qualitative approach. Most of the respondents (N = 16) sought information about their disease on the Internet. They looked for information using search engines (mainly Google) and general concepts as their own cancer name. In general, they did not share the information obtained with their parents or professional healthcare providers. The interviewees think that the information is difficult to understand because of jargon and that it is not aimed at a young audience. All (N = 20) have presence in social networking sites. AYAs with cancer are starting to create content themselves: three started a blog in order to explain their experience to others like them. The study shows that is necessary to increase efforts on adapting content to these age groups in order to help them learn more about their own disease. This may contribute to increment their adherence to treatment and to maintain surveillance of potential consequences and health problems post-treatment. [ABSTRACT FROM AUTHOR]

Background: Transforming spatial data from one scale to another is a challenge in geographic analysis. As part of a larger, primary study to determine a possible association between travel barriers to pediatric cancer facilities and adolescent cancer mortality across the United States, we examined methods to estimate mortality within zones at varying distances from these facilities: (1) geographic centroid assignment, (2) population-weighted centroid assignment, (3) simple areal weighting, (4) combined population and areal weighting, and (5) geostatistical areal interpolation. For the primary study, we used county mortality counts from the National Center for Health Statistics (NCHS) and population data by census tract for the United States to estimate zone mortality. In this paper, to evaluate the five mortality estimation methods, we employed address-level mortality data from the state of Georgia in conjunction with census data. Our objective here is to identify the simplest method that returns accurate mortality estimates. Results: The distribution of Georgia county adolescent cancer mortality counts mirrors the Poisson distribution of the NCHS counts for the U.S. Likewise, zone value patterns, along with the error measures of hierarchy and fit, are similar for the state and the nation. Therefore, Georgia data are suitable for methods testing. The mean absolute value arithmetic differences between the observed counts for Georgia and the five methods were 5.50, 5.00, 4.17, 2.74, and 3.43, respectively. Comparing the methods through paired t-tests of absolute value arithmetic differences showed no statistical difference among the methods. However, we found a strong positive correlation (r = 0.63) between estimated Georgia mortality rates and combined weighting rates at zone level. Most importantly, Bland--Altman plots indicated acceptable agreement between paired arithmetic differences of Georgia rates and combined population and areal weighting rates. Conclusions: This research contributes to the literature on areal interpolation, demonstrating that combined population and areal weighting, compared to other tested methods, returns the most accurate estimates of mortality in transforming small counts by county to aggregated counts for large, non-standard study zones. This conceptually simple cartographic method should be of interest to public health practitioners and researchers limited to analysis of data for relatively large enumeration units. [ABSTRACT FROM AUTHOR]

Background Childhood and adolescent cancers are uncommon, but they have important economic and health impacts on patients, families, and health care systems. Few studies have measured the economic burden of care for childhood and adolescent cancers. Objectives To estimate costs of cancer care in population-based cohorts of children and adolescents from the public payer perspective. Methods We identified patients with cancer, aged 91 days to 19 years, diagnosed from 1995 to 2009 using cancer registry data, and matched each to three noncancer controls. Using linked administrative health care records, we estimated total and net resource-specific costs (in 2012 Canadian dollars) during 90 days prediagnosis and 1 year postdiagnosis. Results Children (≤14 years old) numbered 4,396: 36% had leukemia, 21% central nervous system tumors, 10% lymphoma, and 33% other cancers. Adolescents (15–19 years old) numbered 2,329: 28.9% had lymphoma. Bone and soft tissue sarcoma, germ cell tumor, and thyroid carcinoma each comprised 12% to 13%. Mean net prediagnosis costs were $5,810 and $1,127 and mean net postdiagnosis costs were $136,413 and $62,326 for children and adolescents, respectively; the highest were for leukemia ($157,764 for children and $172,034 for adolescents). In both cohorts, costs were much higher for patients who died within 1 year of diagnosis. Inpatient hospitalization represented 69% to 74% of postdiagnosis costs. Conclusions Treating children with cancer is costly, more costly than treating adolescents or adults. Substantial survival gains in children mean that treatment may still be very cost-effective. Comprehensive age-specific population-based cost estimates are essential to reliably assess the cost-effectiveness of cancer care for children and adolescents, and measure health system performance. [ABSTRACT FROM AUTHOR]

An increasing number of adolescents and young adults (AYA) are becoming cancer survivors and are dealing with long-term effects of the disease and its treatment. We aimed to collect detailed self-reported information about the areas of work, education, and the financial situation of AYA survivors after acute treatment. We further examined sources of support that were perceived as particular helpful. We conducted semi-structured interviews with a sample of 11 AYA cancer survivors (on average 5 years from diagnosis; mean age at diagnosis = 25.7 years) that had been recruited for the AYA-Leipzig longitudinal study. Interviews were transcribed and data were analysed using qualitative content analysis. The following themes emerged as relevant: (1) career modifications and job loss, (2) career interruptions and delays, (3) uncertainty in the return-to-work process, (4) reduced work ability, (5) discrimination at the workplace, (6) changes in the personal importance of work and (7) financial burdens. Sources of considerable support included relatives as well as German social security institutions. Health care providers should address the specific risk of a financial burden and the somewhat complex social legal situation of young adult survivors after cancer diagnosis. AYA cancer survivors need age-specific comprehensive cancer survivorship support programs. These should accompany them in the long term and be targeted to the individual need for career modification or reorientation - even after the completion of cancer treatment and rehabilitation. • AYA survivors of cancer often experience consequences regarding work, education and financial situation. • As relevant emerged: career modifications; uncertainty; reduced work ability and importance; ; and financial burdens. • Sources of considerable support included relatives as well as support from German social security institutions. • The AYA financial and social legal situation should be addressed. • It is helpful to involve close relatives into AYA survivorship concepts. [ABSTRACT FROM AUTHOR]