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The implementation of standardized long-term follow-up care for childhood cancer survivors is crucial for ensuring their well-being. In this paper, we focus on the integration of the Survivorship Passport into the German healthcare system, particularly through collaboration between the University Hospital Schleswig-Holstein and the German Childhood...
Background: Childhood, adolescent, and young adult cancer survivors (CAYACS) face significant long-term health risks, yet adherence to long-term follow-up (LTFU) care remains inconsistent. This study explores the concept of akrasia (i.e., acting against one’s better judgment by engaging in behaviors known to be harmful or counterproductive) to unde...
Introduction
Evidence is accumulating that not all children with cancer have benefitted equally from diagnostic and therapeutic improvements and that socioeconomic conditions are also associated with prognosis - even in high-income countries where equal access to healthcare is presumed. We investigated the association between area-based socioeconom...
The Survivorship Passport (SurPass) for childhood cancer survivors provides a personalized treatment summary together with a care plan for long-term screening of possible late effects. HL7 FHIR connectivity of Electronic Health Record (EHR) systems with the SurPass has been proposed to reduce the burden of collecting and organizing the relevant inf...
Innovation in cancer therapy has increased childhood cancer survival rates. However, survivors are still at risk of developing late effects. In the digital transformation of the health sector, the Survivorship Passport (SurPass) can support long-term follow-up care plans. Gaps in seamless connectivity among hospital departments, primary care, combi...
Background
To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care ce...
Background
Tumors of the central nervous system (CNS) are the second most common type of pediatric cancer in Germany. We aimed to describe registration practice, incidence, and survival patterns for childhood CNS tumors in Germany for the past 40 years.
Procedure
Including all CNS tumor cases in children diagnosed at ages 0–14 years registered at...
Purpose: The Short Form-36 (SF-36) is widely used in many research contexts and cultures to assess health-related quality of life (HRQOL). We investigated the measurement properties of the SF-36 in a large cohort study among childhood cancer survivors living in 5 European countries.
Methods: The PanCareLIFE project includes adult survivors of child...
Background
Childhood cancer survivors are at risk of subsequent gliomas and meningiomas, but the risks beyond age 40 years are uncertain. We quantified these risks in the largest ever cohort.
Methods
Using data from 69,460 5-year childhood cancer survivors (diagnosed 1940–2008), across Europe, standardized incidence ratios (SIRs) and cumulative in...
Purpose
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 5 years after diagnosis. We aimed to address this...
Purpose
To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe.
Methods
Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six onlin...
Purpose
Auditory complications are potential side effects from childhood cancer treatment. Yet, limited evidence exists about the impact of auditory complications—particularly tinnitus—on health-related quality of life (HRQoL) among childhood cancer survivors (CCS). We determined the prevalence of hearing loss and tinnitus in the European PanCareLI...
The impact of the temporal sequence by which cranial radiotherapy (CRT) and platin‐based chemotherapy (PCth) are administered on sensorineural hearing loss (SNHL) in pediatric and adolescent central nervous system (CNS) and head‐and‐neck (HN) cancer patients has not yet been studied in detail. We examined the ototoxic effects of sequentially applie...
Background:
Timely diagnosis of treatment-related chronic health conditions in childhood cancer survivors (CCS) may result in reduced long-term morbidity and mortality. Evidence-based guidelines serve as a tool to implement risk-adapted screening examinations in long-term follow-up (LTFU) of CCS.
Summary:
New international LTFU guidelines from t...
Purpose
Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures....
Purpose: Childhood cancer survivors (CCS) are at risk for increased morbidity and reduced quality of life associated with treatment-related late effects. In Germany, however, only a few of the more than 40,000 CCS registered in the German Childhood Cancer Registry (GCCR) currently benefit from adequate clinical long-term follow-up (LTFU) structures...
Background:
Childhood and adolescent cancer constitutes only a very small fraction of the cancer cases in Germany and throughout the world, but it is the most frequent cause of disease-related death in children. The diagnostic spectrum differs markedly from that of adults. More than 90% of all cases of childhood and adolescent cancer in Germany ar...
BACKGROUND
To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care ce...
Purpose:
Radiation to the bone and exposure to alkylating agents increases the risk of bone cancer among survivors of childhood cancer, but there is uncertainty regarding the risks of bone tissue radiation doses below 10 Gy and the dose-response relationship for specific types of chemotherapy.
Methods:
Twelve European countries contributed 228 c...
Childhood cancer is the leading disease‐related cause of death among under 15 year olds in Europe. Since primary preventive measures are lacking, improving survival probabilities and long‐term well‐being remain primary goals. With this report, we provide the first long‐term assessment and interpretation of patterns in childhood cancer survival in G...
Auditory complications are potential side effects from childhood cancer treatment. Yet, limited evidence exists about the impact of auditory complications—particularly tinnitus—on health–related quality of life (HRQoL) among childhood cancer survivors (CCS). We determined the prevalence of hearing loss and tinnitus in the large European PanCareLIFE...
Purpose:
Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport (SurPass) is a digital tool which can aid in the delivery of adequate LTFU care. During the European PanCareSurPass (PCSP) project, the SurPass v2.0 will be implemented and evaluated a...
Hintergrund: Krebs im Kindes-und Jugendalter stellt nur einen sehr geringen Anteil der Krebserkrankungen in Deutschland und weltweit dar, allerdings sind sie bei Kindern die häufigste krankheitsbedingte Todesursache. Das Diagnosespektrum ist vollkommen anders als bei Erwachsenen. Mehr als 90 % aller Erkrankungen von Krebs im Kindes-und Jugendalter...
[This corrects the article DOI: 10.3389/fonc.2022.963223.].
Background
Survivors of Hodgkin lymphoma (HL) are at risk of developing non‐Hodgkin lymphoma (NHL) after treatment; however, the risks of developing subsequent primary lymphomas (SPLs), including HL and NHL, after different types of childhood cancer are unknown. The authors quantified the risk of SPLs using the largest cohort of childhood cancer su...
Background
Survivors of childhood cancer are at risk of subsequent primary malignant neoplasms (SPNs), but the risk for rarer types of SPNs, such as oral cancer, is uncertain. Previous studies included few oral SPNs, hence large-scale cohorts are required to identify groups at risk s .
Methods
The PanCareSurFup cohort includes 69,460 5-year surviv...
Background
Improved treatments for childhood cancer result in a growing number of long-term childhood cancer survivors (CCS). The diagnosis and the prevalence of comorbidities may, however, influence their lifestyle later in life. Nonetheless, little is known about differences in late effects between CCS of a first primary neoplasm (FPN) in childho...
Background:
Data on late mortality from pediatric germ cell tumors (GCTs) are limited to small case series. Our population-based study aimed to investigate excess risk of death in survivors of GCT in childhood and adolescence, whether long-term mortality changed over time and by period of diagnosis.
Methods:
The PanCare Childhood and Adolescent...
Background
Pediatric CML is very rare. Before the introduction of tyrosine kinase inhibitors (TKIs), allogeneic hematopoietic stem cell transplantation (HSCT) from a donor -if available- was the standard cure attempt. Data on the long-term outcome and health-related quality of life (HRQOL) in former pediatric CML patients undergoing HSCT are lackin...
PURPOSE
Heart failure (HF) is a potentially life-threatening complication of treatment for childhood cancer. We evaluated the risk and risk factors for HF in a large European study of long-term survivors. Little is known of the effects of low doses of treatment, which is needed to improve current treatment protocols and surveillance guidelines.
ME...
Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims to capture key health data about the survivors and their treatment, as well as personalized r...
Background
Hematopoietic stem cell transplantation (HSCT) is associated with severe medical complications and variable outcome depending on the recipient's disease stage and health condition. Biomarkers predicting outcome may have therapeutic relevance in pediatric cancer care. Insulin like growth factor 1 (IGF 1) is a mitogenic and anabolic peptid...
Zusammenfassung
Hintergrund und Ziel
Ein Drittel der Langzeitüberlebenden nach Krebs im Kindes- und Jugendalter leidet unter schweren Spätfolgen (z. B. Zweittumoren, kardiale Probleme). Am Deutschen Kinderkrebsregister (DKKR) sind ca. 70.000 inzidente Erkrankungsfälle dokumentiert, von denen sich über 41.000 in Langzeitbeobachtung befinden und für...
jats:title>Abstract Background The etiology and most risk factors for a sporadic first primary neoplasm in childhood or subsequent second primary neoplasms are still unknown. One established causal factor for therapy-associated second primary neoplasms is the exposure to ionizing radiation during radiation therapy as a mainstay of cancer treatment....
Late mortality of European 5‐year survivors of childhood or adolescent cancer has dropped over the last 60 years, but excess mortality persists. There is little information concerning secular trends in cause‐specific mortality among older European survivors. PanCareSurFup pooled data from 12 cancer registries and clinics in 11 European countries fr...
Major advances in the treatment of paediatric malignancies have resulted in significant and impressive results, with the overall 5-year survival rate exceeding 80%. Childhood cancer survivors (CCSs), though being cured of cancer, often experience late effects, both physical and psychological, secondary to their cancer or its treatment. Many survivo...
Background:
Female childhood cancer survivors (CCSs) carry a risk of therapy-related gonadal dysfunction. Alkylating agents (AA) are well-established risk factors, yet inter-individual variability in ovarian function is observed. Polymorphisms in CYP450 enzymes may explain this variability in AA-induced ovarian damage. We aimed to evaluate associa...
Background
The indirect impact of the COVID-19 pandemic on cancer care and timely diagnosis is of increasing concern. We investigated the impact of the COVID-19 pandemic on incidence, time of diagnosis and delivery of healthcare among paediatric oncology patients in Germany in 2020.
Methods
We analysed incident paediatric cancer cases diagnosed in...
In children with cancer, the heterogeneity in ototoxicity occurrence after similar treatment suggests a role for genetic susceptibility. Using a genome-wide association study (GWAS) approach, we identified a genetic variant in TCERG1L (rs893507) to be associated with hearing loss in 390 non-cranial irradiated, cisplatin-treated children with cancer...
Background:
The aetiology of childhood leukaemia is largely unknown. Analyses of geographical differences may enhance aetiologic insights. The reunification of Germany in 1990 provides a unique opportunity to evaluate incidence patterns and time trends in two merging countries with substantial lifestyle, social and socioeconomic differences. With...
Objectives:
Long-term survivors of childhood cancer are at increased risk for sequelae such as poor mental health (MH) or impaired health-related quality of life (HrQoL). We aimed to evaluate early adverse effects on MH and HrQoL in young childhood cancer survivors (YCCS) before school entry.
Methods:
In a nationwide prospective cohort study, ch...
Cancer among children and adolescents is rare and represents a heterogeneous group of malignancies. On average, approximately 2200 incident cases in children and adolescents below the age of 18 years are reported annually to the German Childhood Cancer Registry. Incidence rates are highest in children below the age of 5 years. Boys are usually diag...
PanCareLIFE brought together European partners and is the largest study to have evaluated the issues of fertility impairment, hearing loss, and health-related quality of life in survivors of childhood and adolescent cancer. Successful delivery of the project aims did not evolve solely from scientific qualities. Organizational structure and careful...
STUDY QUESTION
Which chemotherapeutic agents and body site-specific radiation fields are dose-dependently associated with an increased risk of fertility impairment in long-term female childhood, adolescent and young adulthood (CAYA) cancer survivors?
SUMMARY ANSWER
Busulfan, lower abdominal radiotherapy (RT) and total body irradiation (TBI) seem t...
STUDY QUESTION
Do genetic variations in the DNA damage response pathway modify the adverse effect of alkylating agents on ovarian function in female childhood cancer survivors (CCS)?
SUMMARY ANSWER
Female CCS carrying a common BR serine/threonine kinase 1 (BRSK1) gene variant appear to be at 2.5-fold increased odds of reduced ovarian function afte...
Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCa...
Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effec...
Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fer...
Background
Survival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors’ health-related quality of life (HRQoL).
Objective...
Background:
Irreversible sensorineural hearing loss is a common side effect of platinum treatment with the potential to significantly impair the neurocognitive, social and educational development of childhood cancer survivors. Genetic association studies suggest a genetic predisposition for cisplatin-induced ototoxicity. Among other candidate gene...
Objective
In this report, we determine the cumulative incidence of symptomatic cardiac ischaemia and its risk factors among European 5-year childhood cancer survivors (CCS) participating in the PanCareSurFup study.
Methods
Eight data providers (France, Hungary, Italy (two cohorts), the Netherlands, Slovenia, Switzerland and the UK) participating i...
Genetic association studies suggest a genetic predisposition for cisplatin-induced ototoxicity. Among other candidate genes, thiopurine methyltransferase (TPMT) is considered a critical gene for susceptibility to cisplatin-induced hearing loss in a pharmacogenetic guideline. The PanCareLIFE cross-sectional cohort study evaluated the genetic associa...
BACKGROUND
Survival after childhood cancer has improved to more than 80% during the last years, leading to an increased number of childhood cancer survivors. Cancer itself or its treatment may cause chronic health conditions, including somatic and mental sequelae, which may impact survivors’ Health related Quality of Life (HRQoL).
OBJECTIVE
The pr...
Ototoxicity is a common side effect of platinum treatment and manifests as irreversible, high-frequency sensorineural hearing loss. Genetic association studies have suggested a role for SNPs in genes related to the disposition of cisplatin or deafness. In this study, 429 pediatric patients that were treated with cisplatin were genotyped for 10 cand...
Background:
Even though the survival of childhood cancer has improved over the last decades, there are still children dying shortly after diagnosis. The aim of the study is to add to understanding of the reasons for deaths shortly after date of diagnosis.
Methods:
Using data of the population-based German Childhood Cancer Registry (cancer below...
Background:
Many childhood cancer survivors develop treatment-associated late effects emerging years or even decades after the end of treatment. Evidence-based guidelines recommend risk-adapted screening, facilitating early diagnosis and management of these sequelae. Long-term follow-up (LTFU) in specialized late effects clinics is devised to impl...
Zusammenfassung
Krebs bei Kindern ist selten. Die 15-Jahresprognose ist mit 82% sehr gut. In Deutschland werden weitgehend alle Fälle am Deutschen Kinderkrebsregister erfasst, ca. 2100 Erkrankungen p.a. unter 18 Jahren. Häufige Diagnosen bei Kindern sind Leukämien, Lymphome und Hirntumore. Langzeitfolgen sind erkennbar an langfristig erhöhter Morta...
Dank verbesserter Therapiemöglichkeiten haben sich die Langzeitüberlebensraten der Patienten mit einer Krebserkrankung im Kindes- und Jugendalter in den letzten Jahrzehnten deutlich verbessert. Durch die zur Heilung der Krebserkrankung eingesetzten Therapien können jedoch Folgeerkrankungen bestehen bleiben oder auch viele Jahre nach Therapieende no...
Zusammenfassung
Krebskranke Kinder und Jugendliche überleben heute dank Heilungsraten von über 80% viel häufiger ihre Krebserkrankung als vor 40 Jahren. Etwa 33 000 geheilte ehemalige krebskranke Kinder und Jugendliche sind in der Langzeitbeobachtung über das Deutsche Kinderkrebsregister (DKKR) bundesweit erfasst. Heißt geheilt aber auch gesund? Be...
Purpose:
The number of persons who have successfully completed treatment for a cancer diagnosed during childhood and who have entered adulthood is increasing over time, and former patients will become aging citizens.
Methods:
Ten years ago, an expert panel met in Erice, Italy, to produce a set of principles concerning the cure and care of surviv...
Aims:
Survival after cancer diagnosed during childhood or adolescence continues to improve with new treatments and supportive therapies. Optimal long-term care requires that risks to vulnerable organs are clearly defined and translated into guidelines that are implemented into practice. PanCareLIFE is a pan-European consortium that addresses survi...
Background
Improved risk stratification, more effective therapy and better supportive care have resulted in survival rates after childhood cancer of around 80% in developed countries. Treatment however can be harsh, and three in every four childhood cancer survivors (CCS) develop at least one late effect, such as gonadal impairment. Gonadal impairm...
Erratum zu: Der Onkologe 2018 10.1007/s00761-018-0449-1 Im vorletzten Abschnitt zur Überschrift „Projekte PanCareSurFup und PanCareLIFE“ muss es korrekt heißen (Ergänzung in kursiv): … Von den 25 datenbereitstellenden Einrichtungen wurden demografische, klinische (z. B. zur …
BACKGROUND
Survival rates after childhood cancer now reach nearly 80% in developed countries. However, the treatment leading to this improved survival can cause serious adverse effects that have life-long negative impacts on survivor’s quality of life. Hearing impairment is a common adverse effect in children treated with cisplatin-based chemothera...
Background
Survival rates after childhood cancer now reach nearly 80% in developed countries. However, treatments that lead to survival and cure can cause serious adverse effects with lifelong negative impacts on survivor quality of life. Hearing impairment is a common adverse effect in children treated with cisplatin-based chemotherapy or cranial...
Background:
Because of improvements in cancer treatment, more than 80% of all children with cancer now survive at least five years from the time of diagnosis. As a result, late sequelae of cancer and its treatment have become more common, particularly second malignancies. We studied the current incidence of second malignancies among childhood canc...
Background:
Despite 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-rep...
BACKGROUND
Despite 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-repor...
Childhood cancer survivors face risks from a variety of late effects, including cardiac events, second cancers, and late mortality. The aim of the pan-European PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies (PanCareSurFup) Consortium was to collect data on incidence and risk factors for these late effects among childhoo...
Introduction:
We investigate the risks of subsequent primary bone cancers after childhood and adolescent cancer in 12 European countries. For the first time, we satisfactorily address the risks beyond 40 years from diagnosis and beyond 40 years of age among all survivors.
Methods:
This largest-ever assembled cohort comprises 69 460 five-year sur...
Background:
Childhood cancer survivors are at risk of subsequent primary soft-tissue sarcomas (STS), but the risks of specific STS histological subtypes are unknown. We quantified the risk of STS histological subtypes after specific types of childhood cancer.
Methods:
We pooled data from 13 European cohorts, yielding a cohort of 69 460 five-year...
Background and aim:
Childhood cancer survivors are at high risk of long-term adverse effects of cancer and its treatment, including cardiac events. The pan-European PanCareSurFup study determined the incidence and risk factors for cardiac events among childhood cancer survivors. The aim of this article is to describe the methodology of the cardiac...
Data collection form chemotherapy.
(DOC)
Due to the considerably improved prognosis of childhood cancer, research regarding the long-term consequences has become highly valuable. The population-based German Childhood Cancer Registry forms the basis of the long-term follow-up of these patients. The cohort comprises over 25,000 patients (with malignant diseases before their 15th birthday) w...
Mit der deutlich verbesserten Prognose von Krebserkrankungen im Kindesalter hat die Spätfolgenforschung einen hohen Stellenwert erhalten. Das bevölkerungsbezogene Deutsche Kinderkrebsregister stellt die Basis für die Langzeitnachbeobachtung dieser Patienten dar. Die Kohorte umfasst über 25.000 Patienten (maligne Erkrankung vor dem 15. Geburtstag),...
Survivors of pediatric cancer are at increased risk for medical and psychosocial late effects. This study retrospectively investigated the utilization of oncological and psychosocial care by former adolescent cancer patients (≥ 5 years since cancer diagnosis) in Germany.
Based on data of the German Childhood Cancer Registry (N=1 876 survivors of ca...
The objective of this paper is to provide information about the quality (e.g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR).
The GCCR contacts parents or patients to collect and update information on a minimal set of...
To compare the general and health-related life satisfaction (LS) in long-term survivors of adolescent cancer with a community sample and to identify medical and psychosocial factors associated with LS.
LS of 820 survivors (age M = 30.4 ± 6.0 years; time since diagnosis M = 13.7 ± 6.0 years) was assessed with the Questions on Life Satisfaction (FLZ(...
Adolescence involves graduating from school and preparing one's professional career. The accomplishment of these tasks may be hampered by the experience of cancer. This study investigates the educational and professional achievements of German long-term survivors of adolescent cancer.
Adult survivors of cancer during adolescence (n = 820, age at on...
The study investigates psychosexual and family outcomes among German long-term survivors of adolescent cancer.
Survivors of cancer during adolescence (n = 820; age at onset of disease: M = 15.8 years, SD = 0.9, age at follow-up: M = 30.4, SD = 6.0 years) completed questionnaires on their family life and their psychosexual and autonomy development....
To determine the prevalence of posttraumatic stress, depression and anxiety in adults who have survived cancer (5 years) diagnosed in adolescence, as compared to healthy controls.
Survivors (n=820) of cancer during adolescence (age M=30.4+/-6.0 years; M=13.7+/-6.0 years since diagnosis) and 1027 matched controls without history of cancer (age M=31....
