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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. To establish a comprehensive knowledge base on CCS' long-term health in Germany, a database was developed in cooperation with the GCCR. Following a first evaluation phase at two German university centres, this database will be implemented more widely within Germany allowing longitudinal documentation of clinical LTFU data. Methods: The feasibility study cohort comprised 208 CCS aged 18 or older whose medical, mental and psychosocial health data were collected during routine LTFU or first clinic visits in adult care. CCS were enrolled from 04/2021 to 12/2022, and data entry was completed by 03/2023. Descriptive data analysis was conducted. All CCS were stratified into three risk groups (RG) based on their individual risk for developing late effects resulting from their respective diagnoses and treatments. Results: Chronic health conditions of various organ systems associated with late and long-term effects of cancer therapy affected CCS in all RG supporting the clinical relevance of risk-adapted LTFU. Enrolment into the database was feasible and broadly accepted amongst CCS. Conclusion: Implementation of a clinical follow-up care infrastructure and database in Germany will pave the way to collect clinically evaluated and regularly updated health data of potentially over 40,000 German CCS and facilitate future national and international cooperation. [ABSTRACT FROM AUTHOR]

The growing population of long‐term childhood cancer survivors is at increased risk for severe, therapy‐related late effects and premature mortality. The cardiac and vascular late sequelae in long‐term survivors of childhood cancer (CVSS) study is a cohort of patients from Germany diagnosed with a neoplasia prior to 15 years of age in the time period 1980 to 1990. Late mortality was evaluated in a total of 4505 individuals who survived 5 years or more after the initial diagnosis (5‐year survivors). Survivors with a second primary tumor were excluded. Standardized mortality ratios (SMRs) were calculated. By December 2014, 400 patients had died. Available cause of death information from 188 individuals was used to estimate cause‐specific mortality for all deceased persons. Compared to the population of (former) West Germany, we observed an excess overall mortality risk (SMR = 9.53, 95% confidence interval [CI] = 8.62‐10.51). After correcting for missing cause of death information, an increased cancer mortality (SMR = 43.50, 95% CI = 25.79‐73.50) in the 5‐year survivors was detected. Cardiac death was ascertained in 14 individuals, resulting in an SMR of 10.85 (95% CI = 2.80‐32.02) after correcting for missing values. In conclusion, childhood cancer survivors diagnosed in Germany in 1980 to 1990 have a higher mortality risk overall and an elevated risk of dying from cancer and cardiac causes in particular. The results are consistent with those of international cohort studies. However, the reported results are based on few cases and individuals with secondary cancers were excluded. What's new? Since the 1970s, significant improvements have been made in the survival of patients diagnosed with childhood malignancies. Long‐term survivors of childhood cancer, however, have elevated risks for late‐developing therapy‐related effects, including premature mortality. The present study examined long‐term survival specifically within a cohort of 5‐year survivors of childhood cancer in Germany. An excess long‐term overall mortality risk was observed among individuals who experienced childhood malignancies. Cancer and cardiac sequelae were the primary causes of death. Cardiac mortality was noticeably elevated in females. The findings emphasize the importance of monitoring and managing long‐term health in childhood cancer survivors. [ABSTRACT FROM AUTHOR]

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 Mortalität und einem erhöhten Risiko einer Folgekrebserkrankung. In der Kinderonkologie gibt es Bemühungen, eine systematische Langzeitnachsorge aufzubauen. Childhood Cancer is rare. Currently 82% survive their diagnosis 15 years or more. In Germany almost all cases are registered at the German Childhood Cancer Registry, ca. 2100 cases p.a. under 18. Most frequent diagnoses in childhood are leukaemias, lymphomas and brain-tumours. Late effects present as long-term increased mortality and an increased risk of subsequent neoplasms. In pediatric oncology, currently an emphasis is on developing structures for long-term care. [ABSTRACT FROM AUTHOR]

Due to improvements in diagnostics and treatment options in hematology and oncology, and thus increasing chances of survival, the number of long-term survivors living with and after a cancer disease in Germany is constantly rising. Although the existing German healthcare system provides multifaceted healthcare offers that are available to long-term survivors, the healthcare situation of this population is not satisfactory. Thus, orientation guides for long-term survivors as well as new and innovative survivorship programs should be developed. This paper provides an overview of the complex of problems, defines relevant concepts, and devises central topics for the development of survivorship programs for long-term cancer survivors., (© 2022. The Author(s).)

Background and Objectives: One-third of childhood cancer long-term survivors suffer from severe late effects (e.g., secondary cancer and cardiovascular diseases). The German Childhood Cancer Registry (GCCR) holds approximately 70,000 registered cancer cases, of which more than 41,000 are long-term survivors, with recent follow-up and contact information that can be used for scientific studies on late effects. The characteristics of this cohort are presented, previous late effects studies with the support of the GCCR are described, and the respective participation rates are reported., Methods: For all patients who developed cancer between 1980 and 2019 and were in long-term observation at the GCCR, the distribution of diagnoses, current age, observation time, and number of secondary cancers as of 16 July 2021 was determined. The rates of patients who responded to history queries were computed. The influence of determinants on the participation rate were calculated using generalized estimating equations., Results: The cohort comprises 41,466 long-term survivors. Of these, 10% are older than 40 years and 40% had their cancer diagnosis more than 20 years ago. The participation rates range between 30 and 60% and depend on age at diagnosis, the complexity of the study, and the number of previously conducted surveys. A time interval of at least four years between two consecutive contacts seems optimal., Conclusions: Our unique cohort enables population-based research on late effects after childhood cancer. To define a sensible time interval for contacting survivors is essential. In order to ensure that survivors are not contacted too frequently, the number of survivors included in research projects should be as small as possible., (© 2022. The Author(s).)

Purpose: To give a first description of the perception of late effects among long-term survivors after Allogeneic Haematopoietic Stem Cell Transplantation (HSCT) and to validate the German Brief Illness Perception Questionnaire (BIPQ)., Methods: This is a secondary analysis of data from the cross-sectional, mixed-method PROVIVO study, which included 376 survivors from two Swiss HSCT-centres. First, we analysed the sample characteristics and the distribution for each BIPQ item. Secondly, we tested three validity types following the American Educational Research Association (AERA)Standards: content validity indices (CVIs) were assessed based on an expert survey (n = 9). A confirmatory factor analysis (CFA) explored the internal structure, and correlations tested the validity in relations to other variables including data from the Hospital Anxiety and Depression Scale (HADS), the number and burden of late effects and clinical variables., Results: In total, 319 HSCT recipients returned completed BIPQs. For this sample, the most feared threat for post-transplant life was long lasting late effects (median = 8/10). The expert-survey revealed an overall acceptable CVI (0.82), three items-on personal control, treatment control and causal representation-yielded low CVIs (<.78). The CFA confirmed that the BIPQ fits the underlying construct, the Common-Sense Model (CSM) (χ 2 (df) = 956.321, p = 0.00). The HADS-scores correlated strongly with the item emotional representation (r = 0.648; r = 0.656)., Conclusion: According to its overall content validity, the German BIPQ is a promising instrument to gain deeper insights into patients' perceptions of HSCT late effects. However, as three items revealed potential problems, improvements and adaptions in translation are therefore required. Following these revisions, validity evidence should be re-examined through an in-depth patient survey., (Copyright © 2017 Elsevier Ltd. All rights reserved.)

Background: Stereotactic radiosurgery is widely applied to deliver additional dose to head and neck tumors. However, its safety and efficacy remains equivocal., Methods: One hundred eighty-four patients with primary head and neck cancers treated between January 1990 and August 2012 with Gamma Knife stereotactic radiosurgery were retrospectively reviewed., Results: Two hundred fifteen sites were treated with Gamma Knife stereotactic radiosurgery among 184 patients. Fifty-one percent of patients received concurrent external beam radiotherapy (EBRT), 72% had prior surgery, and 46% received chemotherapy. Most (44%) had squamous cell carcinoma and most patients (65%) were treated for recurrent disease. With a median follow-up of 17.3 months, 12-month local control was 82%. Late effects occurred in 59 patients with the most common being temporal lobe necrosis (15 patients)., Conclusion: Radiosurgery can provide tumor control for patients with head and neck cancers involving the skull base. Long-term follow-up is important in survivors to identify late effects., (© 2014 Wiley Periodicals, Inc.)

Purpose: The aim of this sequential mixed methods study was to develop a PRO-CTCAE (Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events)-based measure of the symptom experience of late effects in German speaking long-term survivors of allogeneic stem cell transplantation (SCT), and to examine its content validity., Methods: The US National Cancer Institute's PRO-CTAE item library was translated into German and linguistically validated. PRO-CTCAE symptoms prevalent in ≥50% of survivors (n = 15) and recognized in its importance by SCT experts (n = 9) were identified. Additional concepts relevant to the symptom experience and its consequences were elicited. Content validity of the PROVIVO (Patient-Reported Outcomes of long-term survivors after allogeneic SCT) instrument was assessed through an additional round of cognitive debriefing in 15 patients, and item and scale content validity indices by 9 experts., Results: PROVIVO is comprised of a total of 49 items capturing the experience of physical, emotional and cognitive symptoms. To improve the instrument's utility for clinical decision-making, questions soliciting limitations in activities of daily living, frequent infections, and overall well-being were added. Cognitive debriefings demonstrated that items were well understood and relevant to the SCT survivor experience. Scale Content Validity Index (CVI) (0.94) and item CVI (median = 1; range 0.75-1) were very high., Conclusions: Qualitative and quantitative data provide preliminary evidence supporting the content validity of PROVIVO and identify a PRO-CTCAE item bundle for use in SCT survivors. A study to evaluate the measurement properties of PROVIVO and to examine its capacity to improve survivorship care planning is underway., (Copyright © 2014 Elsevier Ltd. All rights reserved.)