Childhood, Adolescent, And Young Adult Cancer Research Articles

Attitudes toward subsequent primary cancer prevention among survivors of childhood, adolescent, and young adult (CAYA) cancer in Japan: results of a comprehensive questionnaire survey on long-term women's health after CAYA cancer.

Prevention of subsequent primary cancer (SPC) is crucial for cancer survivors, particularly those who developed the disease during childhood, adolescence, and young adulthood (CAYA). The aim of this study was to assess the current status of SPC prevention among female CAYA cancer survivors. A survey regarding long-term health issues after cancer treatment was conducted using questionnaires that targeted women aged ≥20 years who had developed cancer before the age of 40 years. The survey assessed various health issues, and this paper focuses on the items related to the respondents' perceptions and attitudes toward SPC prevention. A total of 1,026 respondents were analyzed. Over 60% of respondents were aware of SPC and the need for screening. The percentages of respondents who underwent regular SPC screening were 68.3%, 68.4%, 49.7%, 58.6%, and 57.0% for cervical, breast, lung, and gastric cancers, respectively. After adjusting for age, type of first cancer, and current follow-up, we found that receiving recommendations for SPC screening was the most critical factor in SPC screening uptake (odds ratio=3.836; 95% confidence interval=2.281-6.451; p<0.001 by logistic regression analysis). However, only 40.4% of the respondents received recommendations for SPC screening from their physicians. Despite good awareness of SPC prevention, the uptake rate for cancer screening among cancer survivors was inadequate, indicating that preventive measures for SPC should be promoted. Because recommendations from others strongly influence SPC screening uptake, healthcare professionals should have accurate knowledge and provide guidance regarding SPC prevention.

The Prevalence of Suicidal Behaviors in Childhood, Adolescent and Young Adults Cancer Survivors: A Systematic Review and Meta-Analysis

BackgroundMany studies have shown that Childhood, adolescent and young adult cancer (CAYAC) survivors have an increased risk of late physical and mental health effects. However, comprehensive data on the risks of suicidal behaviors in CAYAC survivors are still lacking. We investigated the evidence of suicidal behaviors in CAYAC survivors. MethodsWe performed a systematic review and meta-analysis. The literature search was conducted using MEDLINE, Embase, CINAHL, PsycINFO, the Cochrane Database, and reference lists from previous relevant reviews. We summarized the characteristics of eligible studies on suicidal behavior. We performed meta-analysis with random-effect model for available data of them and calculated pooled prevalences with 95% confidence intervals (CI). ResultsWe identified 1108 articles from the search and 22 articles from previous review. We identified 38 eligible studies. 26 cohort studies and 12 cross-sectional studies were compromised. The meta-analysis showed pooled prevalence of suicide was 0.152% (95% CI: 0.103-0.209), suicide attempt was 2.2% (95%CI; 1.9-2.6) and suicidal ideation was 9.2% (95%CI: 7.8-10.6). Some studies identified specific CAYAC survivors at risk of suicide as age, type of cancer and treatments. LimitationsOutcome measures could not be identified in some studies in the meta-analysis. ConclusionsThe findings revealed prevalence of suicidal behaviors in CAYAC survivors. Greater awareness and monitoring are needed of these risks, and of issues that affect support to prevent suicidal behaviors in CAYAC survivors.

Human Papillomavirus Vaccination in Adult Survivors of Childhood, Adolescent, and Young Adult Cancers: A Missed Opportunity.

Introduction Studies assessing human papillomavirus (HPV) vaccination uptake in survivors of childhood, adolescent, and young adult (CAYA) cancers are sparse. We examined HPV vaccine uptake between survivors of CAYA cancer aged 18-35 and 18-35-year-old respondents without a cancer diagnosis in the United States. Methods We used the 2017-2018 National Health Interview Survey, a national, annual cross-sectional national dataset that monitors health-related information on the non-institutionalized civilian population in the United States. Outcome variables included: 1) self-reported initiation of the HPV vaccine, defined as having received ≥1 dose, and 2) self-reported completion of the HPV vaccine, defined as having received ≥3 doses. The exposure variable was cancer survivorship, dichotomized as CAYA cancer survivors (those diagnosed with cancer during childhood, adolescence, or young adulthood) versus non-cancer survivors (no cancer diagnosis). -Weighted multivariable logistic regression models estimated the association between cancer survivorship and HPV vaccine initiation and completion, adjusting for socioeconomic covariates and factors related to healthcare access. Results A total of 2677 respondents were included in the study, of which 177 (5.3%) were CAYA cancer survivors. Overall, 28.0% of the study cohort initiated and 17.1% completed the HPV vaccine series. When stratified by cancer survivorship, initiation of the HPV vaccine (27.1%) and completion of the vaccine series (20.3%) among CAYA cancer survivors were comparable to respondents without cancer diagnosis (initiation: 28.1%, completion: 16.9%). After we controlled for covariates, cancer survivorship had neither a significant association with initiation of HPV vaccine (aOR=1.12; 95% CI, 0.71-1.79; P=0.6242) nor completion of HPV vaccine (aOR=1.37; 95% CI, 0.84-2.22; P=0.2055). Conclusions There was low HPV vaccination initiation and completion among both cohorts. CAYA may benefit the most from HPV vaccination, given that they are at a higher risk of developing secondary HPV-related cancer.

Serum Carnitine Concentrations and Cardiac Function in Pediatric, Adolescent and Young Adult Oncology Patients Receiving High-Dose Anthracyclines

OBJECTIVE Anthracycline chemotherapy agents have significant dose-dependent cardiotoxic effects. ­Carnitine, a non-essential amino acid, is involved in long chain fatty acid oxidation, and carnitine deficiency can result in cardiomyopathy and cardiac arrhythmias. If administered concurrently with chemotherapy, carnitine supplementation could be a potential strategy to prevent cardiotoxicity. However, the association between serum carnitine concentrations and anthracycline cardiotoxicity during cancer treatment in the childhood, adolescent, and young adult (CAYA) age range has not been established. METHODS This prospective pilot cohort study characterized changes in serum carnitine concentrations and cardiac function before, during, and approximately 1 year after large-dose anthracycline therapy in newly diagnosed CAYA cancer patients. RESULTS Among 21 patients with a mean cumulative anthracycline dose exposure of 409 mg/m2 of ­doxorubicin equivalents, left ventricular ejection fraction and relative wall thickness decreased, indicating an overall decline in cardiac function. A reversible decrease in serum carnitine concentrations was also observed. A non-statistically significant positive correlation was observed; for every 1 mmol/L decrease in serum carnitine concentration, there was a 0.09% decrease in LVEF (p = 0.2). CONCLUSIONS These findings from this small pilot study suggest that there may be a relationship between serum carnitine concentrations and cardiac function after anthracycline therapy that should be evaluated in larger studies.

From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors

BackgroundHaving sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). MethodsThe PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. ResultsIn total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. ConclusionsThe PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.

Protocol for the 'Supporting Young Cancer Survivors who Smoke' study (PRISM): Informing the development of a smoking cessation intervention for childhood, adolescent and young adult cancer survivors in England.

Childhood, adolescent and young adult (CAYA) cancer survivors are vulnerable to adverse late-effects. For CAYA cancer survivors, tobacco smoking is the most important preventable cause of ill-health and early death. Yet, effective strategies to support smoking cessation in this group are lacking. The PRISM study aims to undertake multi-method formative research to explore the need for, and if appropriate, inform the future development of an evidence-based and theory-informed tobacco smoking cessation intervention for CAYA cancer survivors. PRISM involves three phases of: 1) an environmental scan using multiple strategies to identify and examine a) smoking cessation interventions for CAYA cancer survivors that are published in the international literature and b) current smoking cessation services in England that may be available to, or tailorable to, CAYA cancer survivors; 2) a qualitative study involving semi-structured interviews with CAYA cancer survivors (aged 16-29 years and who are current or recent ex-smokers and/or current vapers) to explore their views and experiences of smoking, smoking cessation and vaping; and 3) stakeholder workshops with survivors, healthcare professionals and other stakeholders to consider the potential for a smoking cessation intervention for CAYA cancer survivors and what such an intervention would need to target and change. Findings will be disseminated to patient groups, healthcare professionals and researchers, through conference presentations, journal papers, plain English summaries and social media. PRISM will explore current delivery of, perceived need for, and barriers and facilitators to, smoking cessation advice and support to CAYA cancer survivors from the perspective of both survivors and healthcare professionals. A key strength of PRISM is the user involvement throughout the study and the additional exploration of survivors' views on vaping, a behaviour which often co-occurs with smoking. PRISM is the first step in the development of a person-centred, evidence- and theory-based smoking cessation intervention for CAYA cancer survivors who smoke, which if effective, will reduce morbidity and mortality in the CAYA cancer survivor population.

European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5years after diagnosis: a PanCare guideline.

Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of cancer treatment throughout their lives. There is a lack of evidence-based guidelines on optimal surveillance strategies for the period from the end of treatment to 5years after diagnosis. We aimed to address this gap by developing recommendations for short-term surveillance of health problems based on existing long-term follow-up (LTFU) care guidelines. The guideline working group, consisting of healthcare professionals, parents and survivor representatives from 10 countries, worked together to identify relevant health problems that may occur in survivors between the end of treatment and 5years after diagnosis and to develop recommendations for short-term surveillance of health problems. The recommendations were drawn from existing LTFU guidelines and adapted where necessary based on clinical expertise. The working group developed 44 recommendations for short-term surveillance of health problems, which were divided into four categories based on the level of surveillance required: awareness only (n = 11), awareness, history and/or physical examination without surveillance test (n = 15), awareness, history and/or physical examination with potential surveillance test (n = 1) and awareness, history and/or physical examination with surveillance test (n = 17). The development of a guideline for short-term surveillance of health problems fills a critical gap in survivorship care for CAYA cancer survivors, providing much-needed support immediately after treatment up to 5years after diagnosis. This guideline will support healthcare professionals to provide appropriate follow-up care and improve the quality of life of CAYA cancer survivors.

A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.

Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence‐based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence‐based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment‐related late adverse effects for survivors of CAYA cancers.Lay Summary A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer.On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.

Hypothalamic-Pituitary and Other Endocrine Surveillance Among Childhood Cancer Survivors.

Endocrine disorders in survivors of childhood, adolescent, and young adult (CAYA) cancers are associated with substantial adverse physical and psychosocial effects. To improve appropriate and timely endocrine screening and referral to a specialist, the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) aims to develop evidence and expert consensus-based guidelines for healthcare providers that harmonize recommendations for surveillance of endocrine disorders in CAYA cancer survivors. Existing IGHG surveillance recommendations for premature ovarian insufficiency, gonadotoxicity in males, fertility preservation, and thyroid cancer are summarized. For hypothalamic-pituitary (HP) dysfunction, new surveillance recommendations were formulated by a guideline panel consisting of 42 interdisciplinary international experts. A systematic literature search was performed in MEDLINE (through PubMed) for clinically relevant questions concerning HP dysfunction. Literature was screened for eligibility. Recommendations were formulated by drawing conclusions from quality assessment of all evidence, considering the potential benefits of early detection and appropriate management. Healthcare providers should be aware that CAYA cancer survivors have an increased risk for endocrine disorders, including HP dysfunction. Regular surveillance with clinical history, anthropomorphic measures, physical examination, and laboratory measurements is recommended in at-risk survivors. When endocrine disorders are suspected, healthcare providers should proceed with timely referrals to specialized services. These international evidence-based recommendations for surveillance of endocrine disorders in CAYA cancer survivors inform healthcare providers and highlight the need for long-term endocrine follow-up care in subgroups of survivors and elucidate opportunities for further research.

Coronary artery disease surveillance among childhood, adolescent and young adult cancer survivors: A systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group

BackgroundCoronary artery disease (CAD) is a concerning late outcome for cancer survivors. However, uniform surveillance guidelines are lacking. AimTo harmonise international recommendations for CAD surveillance for survivors of childhood, adolescent and young adult (CAYA) cancers. MethodsA systematic literature review was performed and evidence graded using the Grading of Recommendations, Assessment, Development and Evaluation criteria. Eligibility included English language studies, a minimum of 20 off-therapy cancer survivors assessed for CAD, and 75% diagnosed prior to age 35 years. All study designs were included, and a multidisciplinary guideline panel formulated and graded recommendations. Results32 of 522 identified articles met eligibility criteria. The prevalence of CAD ranged from 0 to 72% and was significantly increased compared to control populations. The risk of CAD was increased among survivors who received radiotherapy exposing the heart, especially at doses ≥15 Gy (moderate-quality evidence). The guideline panel agreed that healthcare providers and CAYA cancer survivors treated with radiotherapy exposing the heart should be counselled about the increased risk for premature CAD. While the evidence is insufficient to support primary screening, monitoring and early management of modifiable cardiovascular risk factors are recommended. Initiation and frequency of surveillance should be based on the intensity of treatment exposures, family history, and presence of co-morbidities but at least by age 40 years and at a minimum of every 5 years. All were strong recommendations. ConclusionThese systematically assessed and harmonised recommendations for CAD surveillance will inform care and guide research concerning this critical outcome for CAYA cancer survivors.

European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

BackgroundLong-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. MethodsThe PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. ResultsTwenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). ConclusionsThe PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020–funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.

Surveillance for subsequent neoplasms of the CNS for childhood, adolescent, and young adult cancer survivors: a systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Exposure to cranial radiotherapy is associated with an increased risk of subsequent CNS neoplasms among childhood, adolescent, and young adult (CAYA) cancer survivors. Surveillance for subsequent neoplasms can translate into early diagnoses and interventions that could improve cancer survivors' health and quality of life. The practice guideline presented here by the International Late Effects of Childhood Cancer Guideline Harmonization Group was developed with an evidence-based method that entailed the gathering and appraisal of published evidence associated with subsequent CNS neoplasms among CAYA cancer survivors. The preparation of these guidelines showed a paucity of high-quality evidence and highlighted the need for additional research to inform survivorship care. The recommendations are based on careful consideration of the evidence supporting the benefits, risks, and harms of the surveillance interventions, clinical judgment regarding individual patient circumstances, and the need to maintain flexibility of application across different health-care systems. Currently, there is insufficient evidence to establish whether early detection of subsequent CNS neoplasms reduces morbidity and mortality, and therefore no recommendation can be formulated for or against routine MRI surveillance. The decision to start surveillance should be made by the CAYA cancer survivor and health-care provider after careful consideration of the potential harms and benefits of surveillance for CNS neoplasms, including meningioma.

Accelerated Aging as a Paradigm to Understand the Late Effects of Cancer Therapies.

Long-term childhood adolescent and young adult (CAYA) cancer survivors may develop health conditions that often coexist at young adulthood or middle age and that normally occur in persons aged 65 years and older, including cardiovascular and musculoskeletal diseases, metabolic syndrome, and secondary malignancies, suggesting that a process of accelerated aging occurs. This chapter summarizes epidemiological evidence and physiological mechanisms of accelerated aging, and possible preventive measures to delay the process of accelerated aging in CAYA cancer survivors. Evidence is mounting that in addition to a high prevalence of specific and multiple aging-related chronic diseases (multimorbidity), CAYA cancer survivors seem to also have a higher risk of other aging phenotypes, including frailty, poor physical performance, and changes in body composition (low muscle and high fat mass). Risk factors for these aging phenotypes include treatment-related factors (cranial-spinal radiotherapy, anthracyclines), sociodemographic factors (higher age, female sex, low socioeconomic status), and unhealthy lifestyle factors (i.e., physical inactivity, obesity, smoking, excess alcohol consumption). The process of accelerated aging may be prevented or delayed by adopting and maintaining a healthy lifestyle, so that CAYA cancer survivors may live a life with optimal quality of life after cancer.

The Concept of Cancer Survivorship and Models for Long-Term Follow-Up.

With improved survival of childhood, adolescent, and young adult (CAYA) cancer, the European survivor population of 300,000-500,000 continues to expand. Most survivors will experience at least one and often multiple cancer- and treatment-related late effects throughout their lives, including endocrine toxicities. Besides affecting their physical and psychosocial health status, these might reduce life expectancy and quality of life. Prevalent endocrine complications include hypothalamic-pituitary dysfunction, central precocious puberty, primary thyroid, male or female gonadal dysfunction, metabolic syndrome, and low bone mineral density. Long-term follow-up (LTFU) care, including education, risk-based prevention, and surveillance strategies, is essential to reduce the burden of endocrine complications and to allow for timely interventions. To integrate scientific expert knowledge, evidence-based clinical practice guidelines have been developed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) and PanCare. These guide LTFU care by describing risk populations and preferred surveillance modalities. Moreover, consensus-based recommendations have been developed by PanCareFollowUp where evidence-based guidance is still awaited. The PanCareSurFup models of care guidelines recommend multidisciplinary team care at or under guidance of a cancer survivorship expert center, so CAYA cancer survivors receive appropriate care and support to optimize health.

Guidance regarding COVID-19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Childhood, adolescent, and young adult (CAYA) cancer survivors may be at risk for a severe course of COVID‐19. Little is known about the clinical course of COVID‐19 in CAYA cancer survivors, or if additional preventive measures are warranted. We established a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) to summarize existing evidence and worldwide recommendations regarding evidence about factors/conditions associated with risk for a severe course of COVID‐19 in CAYA cancer survivors, and to develop a consensus statement to provide guidance for healthcare practitioners and CAYA cancer survivors regarding COVID‐19.

Variations in screening and management practices for subsequent asymptomatic meningiomas in childhood, adolescent and young adult cancer survivors

Childhood, adolescent and young adult (CAYA) cancer survivors treated with cranial radiotherapy are at risk for developing subsequent meningiomas. There is insufficient evidence concerning the benefits and harms of screening for subsequent meningiomas, and uncertainty about the most appropriate clinical management of asymptomatic meningiomas. Data describing current clinical decision-making is essential to formulate surveillance recommendations. We created an online survey to identify the current international clinical practice regarding screening for and management of subsequent asymptomatic meningiomas among CAYA cancer survivors. Fifty-nine physicians from North America and Europe with expertise relevant to meningiomas were invited to participate. Thirty-four physicians (58%) completed the survey. The reported number of CAYA cancer survivors that physicians are willing to screen to detect one meningioma varied widely from 0 to 750 (median 50). Physicians expressed concerns regarding harms from MRI screening, including risks of unnecessary interventions (n = 25, 73%) and overdiagnosis (n = 19, 56%). Growth pattern (n = 33, 97%), location (n = 31, 91%) and size (n = 29, 85%) were endorsed as the most important factors influencing the decision to treat asymptomatic meningiomas. A challenging location (n = 14, 52%), indolent tumor growth pattern (n = 13, 48%), and absence of symptoms (n = 12, 44%) were endorsed as the main reasons to monitor without intervention. There is international variation in opinions and clinical practice regarding screening for subsequent asymptomatic meningiomas among at risk CAYA cancer survivors. Decision-making regarding interventions of asymptomatic meningiomas are largely driven by clinical characteristics. These valuable insights into current clinical practice will inform surveillance guidelines for CAYA cancer survivors.

Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group

To facilitate the implementation of long-term follow-up (LTFU) care and improve equality of care for childhood, adolescent, and young adult (CAYA) cancer survivors, the PanCareSurFup Guidelines Working Group developed evidence-based recommendations for the organization of LTFU. We established an international multidisciplinary guideline panel. A systematic review of the literature published from 1999 to 2017 was completed to answer six clinical questions. The guideline panel reviewed the identified studies, developed evidence summaries, appraised the quality of the body of evidence, and formulated recommendations based on the evidence, expert opinions, and the need to maintain flexibility of application across different healthcare systems. We provide strong recommendations based on low level evidence and expert opinions, regarding organization of LTFU care, personnel involved in LTFU care, components of LTFU care and start of LTFU care. We recommend that risk-adapted LTFU care provided under the guidance of a cancer survivorship expert service or cancer centre should be available and accessible for all CAYA cancer survivors throughout their lifespan. Despite the weak levels of evidence, successful and effective implementation of these recommendations should improve LTFU, thereby leading to better access to appropriate healthcare services and an improvement in health outcomes for CAYA cancer survivors. To improve health outcomes and quality of survivorship of current and future survivors, continued age-adapted education of survivors about the cancer, its treatment, risk of late effects, importance of health behaviours, and necessity of LTFU is important along the cancer and survivorship trajectory.

Recommendations for ototoxicity surveillance for childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCare Consortium.

Childhood, adolescent, and young adult (CAYA) cancer survivors treated with platinum-based drugs, head or brain radiotherapy, or both have an increased risk of ototoxicity (hearing loss, tinnitus, or both). To ensure optimal care and reduce consequent problems-such as speech and language, social-emotional development, and learning difficulties-for these CAYA cancer survivors, clinical practice guidelines for monitoring ototoxicity are essential. The implementation of surveillance across clinical settings is hindered by differences in definitions of hearing loss, recommendations for surveillance modalities, and remediation. To address these deficiencies, the International Guideline Harmonization Group organised an international multidisciplinary panel, including 32 experts from ten countries, to evaluate the quality of evidence for ototoxicity following platinum-based chemotherapy and head or brain radiotherapy, and formulate and harmonise ototoxicity surveillance recommendations for CAYA cancer survivors.

Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE).

BackgroundDespite a significant number of studies on female fertility following childhood, adolescent, and young adult (CAYA) cancer, studies establishing precise (dose-related) estimates of treatment-related risks are still scarce. Previous studies have been underpowered, did not include detailed treatment information, or were based on self-report only without any hormonal assessments. More precise assessments of who is at risk for sub- or infertility are needed.ObjectiveThe objective of our study is to describe the design and methods of 2 studies on female fertility (a cohort study and a nested case-control study) among female survivors of CAYA cancer performed within the European PanCareLIFE project.MethodsFor the cohort study, which aims to evaluate the overall risk of fertility impairment, as well as the risk for specific subgroups of female CAYA cancer survivors, 13 institutions from 9 countries provide data on fertility impairment. Survivors are defined as being fertility impaired if they meet at least one of 8 different criteria based on self-reported and hormonal data. For the nested case-control study, which aims to identify specific treatment-related risk factors associated with fertility impairment in addition to possible dose-response relationships, cases (fertility impaired survivors) are selected from the cohort study and matched to controls (survivors without fertility impairment) on a 1:2 basis.ResultsOf the 10,964 survivors invited for the cohort study, data are available from 6619 survivors, either questionnaire-based only (n=4979), hormonal-based only (n=72), or both (n=1568). For the nested case-control study, a total of 450 cases and 882 controls are identified.ConclusionsResults of both PanCareLIFE fertility studies will provide detailed insight into the risk of fertility impairment following CAYA cancer and diagnostic- or treatment-related factors associated with an increased risk. This will help clinicians to adequately counsel both girls and young women, who are about to start anticancer treatment, as well as adult female CAYA cancer survivors, concerning future parenthood and to timely refer them for fertility preservation. Ultimately, we aim to empower patients and survivors and improve their quality of life.Registered Report IdentifierRR1-10.2196/10824