Die Kohorte der 41.000 Langzeitüberlebenden des Deutschen Kinderkrebsregisters

Kaatsch, Peter; Trübenbach, Claudia; Kaiser, Melanie; Erdmann, Friederike; Spix, Claudia; Grabow, Desiree

doi:10.1007/s00103-022-03507-0

Cited by 9 publications

(5 citation statements)

References 24 publications

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“…Jugendalter stetig zu. Bereits seit 1980 dokumentiert das Deutsche Kinderkrebsregister (DKKR) die Daten der inzwischen etwa 41000 ehemaligen Patient*innen, die vor mindestens 5 Jahren ihre Therapie abgeschlossen haben und somit als Langzeitüberlebende gelten [4]. Durch die Möglichkeit der zentralen Datenregistrierung und Nachverfolgung dieser Patient*innengruppe konnten langfristige Auswirkungen der Krebstherapie auf den gesund-heitlichen Verlauf der Langzeitüberlebenden analysiert werden.…”

Section: Spätfolgen Einer Krebsbehandlungunclassified

Late Effects: Auf welche potentiellen Folgen einer Krebstherapie im Kindesalter müssen wir bei Erwachsenen achten?

Vachek

Gebauer

2023

Dtsch Med Wochenschr

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Was ist neu? Spätfolgen einer Krebserkrankung In den letzten Jahrzehnten hat sich das Langzeitüberleben nach einer Krebserkrankung im Kindes-/Jugendalter stetig verbessert und liegt mittlerweile entitätenübergreifend bei ca. 80%. In zahlreichen Studien konnte gezeigt werden, dass über zwei Drittel dieser Langzeitüberlebenden Jahre bis Jahrzehnte nach Ende der Krebstherapie neue Erkrankungen, sogenannte Spätfolgen, entwickeln. Um diese rechtzeitig diagnostizieren und behandeln zu können, werden risikoadaptierte Vorsorgeuntersuchungen empfohlen, die aufgrund des breiten Spektrums an möglichen Folgeerkrankungen von interdisziplinären Nachsorge-Teams angeboten werden. Neue Nachsorge-Empfehlungen Aufgrund eines erhöhten Brustkrebsrisikos sollten Patientinnen nach thorakaler Radiatio in intensivierte Vorsorgeprogramme eingeschlossen werden. Dies schließt nun auch Patientinnen ab einer Strahlendosis von 10 Gray ein. Verschiedene Krebstherapien erhöhen das Risiko für eine niedrige Knochendichte. Daher sollten diese Patient*innen frühzeitig eine Knochendichte-Messung erhalten. Psychische Erkrankungen können auch Jahre bis Jahrzehnte nach einer Krebserkrankung auftreten und sollten in der Nachsorge regelhaft adressiert werden. Wie sollte die optimale Langzeitnachsorge aussehen? Im Mittelpunkt der Nachsorge steht ein Kernteam aus Internist*innen, pädiatrischen Onkolog*innen, psychosozialen Mitarbeiter*innen und Case Manager*innen. Alle ehemaligen Patient*innen sollten spätestens nach Abschluss der regulären onkologischen Nachsorge, im Gespräch mit den betreuenden Kinderonkolog*innen über Spätfolgen und Langzeitnachsorge aufgeklärt werden, über Bedürfnisse und Bedenken zum Thema Nachsorge sprechen können und einen individuellen Nachsorgeplan nach Risikostratifizierung erhalten.

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Section: Spätfolgen Einer Krebsbehandlungunclassified

Late Effects: Auf welche potentiellen Folgen einer Krebstherapie im Kindesalter müssen wir bei Erwachsenen achten?

Vachek

Gebauer

2023

Dtsch Med Wochenschr

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“…During the last decades, cancer survival rates have improved considerably for most entities resulting in a growing number of cancer survivors worldwide (Siegel et al 2022 ; Kaatsch et al 2022 ). Whereas in the beginning, the aim of cancer therapy was primarily to optimize the overall survival, in recent years, the focus has shifted more and more to living beyond cancer.…”

Section: Introductionmentioning

confidence: 99%

Proposal of a diagnostic algorithm for radiation-induced dropped head syndrome in long-term childhood cancer survivors based on a prospective study in a specialized clinical setting and a review of the literature

Rieken,

Kronziel,

Langer

et al. 2023

J Cancer Res Clin Oncol

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Purpose To prospectively assess the incidence of Dropped Head Syndrome (DHS) in childhood cancer survivors (CCS) and to develop and evaluate a diagnostic algorithm for DHS. Methods A systematic literature search for DHS in combination with neck radiotherapy (RT) exposure was performed. Analyses and a combination of the most common examination methods were integrated into a diagnostic algorithm. Almost all CCSs visiting the local late effects clinic between May 2020 and April 2022 were included in the study. CCS exposed to neck RT with doses ≥ 19 Gy received standardized clinical and neurological assessment and, in case of abnormal results, an MRI scan to confirm muscle atrophy. Results Two hundred and five CCS were included of whom 41 received RT to the neck with ≥ 19 Gy. In the entire cohort and in the subgroup receiving RT, 2.4% and 12% of CCS were affected by DHS, respectively. Results of clinical and neurological assessment correlated well with MRI results. Neck circumference and neck/thigh ratio were lower after neck RT. Over 50% of CCS experienced neck disability and pain. Conclusions A relevant proportion of CCS exposed to neck RT is affected by DHS. High concordance of MRI results with the neurological examination supports the clinical value of the diagnostic algorithm. Measurement of neck circumference might be an easy tool for assessment of neck muscle atrophy in survivors at risk. Implications for cancer survivors Integration of a diagnostic algorithm for DHS in standard long-term follow-up care facilitates diagnosis as well as initiation of early treatment and obviates the need for invasive examinations.

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“…In Germany, since 1980, childhood cancer-related data of all children and adolescents with cancer have been routinely collected by the German Childhood Cancer Registry (GCCR), embedded in the Division of Childhood Cancer Epidemiology (EpiKiK) at the University Medical Centre of Mainz of Johannes Gutenberg University. The GCCRbased cohort now exceeds 40,000 5-year CCS (Kaatsch et al 2022). At least every 5 years, the GCCR carries out questionnaire-based follow-up on relapses and subsequent neoplasms as part of mandated duties (Kaatsch et al 2022;Erdmann et al 2020;Grabow et al 2011;Langer et al 2018).…”

Section: Introductionmentioning

confidence: 99%

“…The GCCRbased cohort now exceeds 40,000 5-year CCS (Kaatsch et al 2022). At least every 5 years, the GCCR carries out questionnaire-based follow-up on relapses and subsequent neoplasms as part of mandated duties (Kaatsch et al 2022;Erdmann et al 2020;Grabow et al 2011;Langer et al 2018). In addition, EpiKiK/GCCR-affiliated investigators have initiated and collaborated on numerous (inter)national studies on long-term health-related outcomes (Kaatsch et al 2022;Byrne et al 2022;van den Oever et al 2023;Kaatsch et al 2021;Aleshchenko et al 2022;Botta et al 2022).…”

Section: Introductionmentioning

confidence: 99%

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics

Sleimann,

Balcerek,

Cytera

et al. 2023

J Cancer Res Clin Oncol

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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.

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Die Kohorte der 41.000 Langzeitüberlebenden des Deutschen Kinderkrebsregisters

Cited by 9 publications

References 24 publications

Late Effects: Auf welche potentiellen Folgen einer Krebstherapie im Kindesalter müssen wir bei Erwachsenen achten?

Late Effects: Auf welche potentiellen Folgen einer Krebstherapie im Kindesalter müssen wir bei Erwachsenen achten?

Proposal of a diagnostic algorithm for radiation-induced dropped head syndrome in long-term childhood cancer survivors based on a prospective study in a specialized clinical setting and a review of the literature

Implementation of a clinical long-term follow-up database for adult childhood cancer survivors in Germany: a feasibility study at two specialised late effects clinics

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