Abstract:Background: Childhood cancer survivors are at risk for therapy-related sequelae and, therefore, require long-term follow-up. At 2 university hospitals in Germany collaborative multidisciplinary late effects clinics were installed to provide specialized care and to evaluate the current health status of these patients in a clinical setting. Patients andMethods: Every patient who visited the late effects clinics at the university hospital in Lübeck and Erlangen over a period of 3 years and met the inclusion crite… Show more
“…Lastly, our participants had been treated before the challenges of long-term survivors came to the fore of research and practice. Today’s CCS situation might be different as international consortia have been formed to improve CCS’ care and quality of life ( Hjorth et al, 2015 ) and Germany now also has specialized late effects clinics in some locations ( Gebauer et al, 2018 ).…”
As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions.
“…Lastly, our participants had been treated before the challenges of long-term survivors came to the fore of research and practice. Today’s CCS situation might be different as international consortia have been formed to improve CCS’ care and quality of life ( Hjorth et al, 2015 ) and Germany now also has specialized late effects clinics in some locations ( Gebauer et al, 2018 ).…”
As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions.
“…Therefore, all CAYA cancer survivors should receive a treatment summary and an individualized and risk-adapted follow-up care plan. A new care structure that is currently being developed for adults who had cancer in the CAYA age range involves interdisciplinary transition or follow-up consultations characterized by the close cooperation of pediatric oncologists, internal medicine specialists/hematologists, oncologists and other specialist disciplines, as well as psychosocial services [18]. This should also work together with qualified rehabilitation facilities for young adults and patients’ associations, or self-help groups.…”
Section: Procurement Sources For Results Of Long-term Surveillancementioning
confidence: 99%
“…For childhood cancer survivors in Germany, a few multidisciplinary late-effects clinics [18] as well as transition programs have already been established. However, to ensure risk-adapted, long-term follow-up care, a nationwide transition program from pediatric to adult health care should be established.…”
Section: Transition and Access To Specialized Aftercare Services For mentioning
<b><i>Background and Summary:</i></b> Thanks to increasing cure rates to currently >80%, children, adolescents, and young adults (CAYA) survive their cancer much more frequently today than decades ago. Due to their long life expectancy, CAYA cancer survivors are at a particular risk of long-term sequelae from the cancer itself or the therapy applied; this requires specific follow-up, and preventative or even therapeutic interventions. Thus, compared to the normal population, morbidity and mortality may be significantly increased. In 2 of 3 survivors, the cancer and the respective treatment can lead to late effects, even after 30 years, which require specific therapy; in about one-third of these cases, these effects are classed as severe. Applying structured follow-up could identify these late effects at an early stage and initiate immediate treatment. In 2018, a working group dealing with long-term survival after cancer detected <40 years of age was founded within the framework of the National Cancer Plan of the German Federal Ministry of Health.
“…interdisziplinäre Nachsorgesprechstunden aufgebaut. Sie sollten von einem Kinderonkologen und einem Internisten/ Allgemeinmediziner o.ä., sowie dem psychosozialen Dienst, interdisziplinär, zusammengeführt werden [7]. Dies muss jeweils individu-ell vor Ort ausgelotet werden.…”
Section: A Interdisziplinäre Nachsorgesprechstunden /-Zentren Für Kiunclassified
ZusammenfassungKrebskranke 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? Beim Vergleich mit der Normalbevölkerung ist festzustellen, dass die Morbidität und Mortalität bei den ehemaligen Patienten deutlich erhöht ist. Die Krebserkrankungen und deren Behandlungen können bei zwei von drei Überlebenden 30 Jahre später zu therapiebedürftigen Spätfolgen führen, bei etwa einem Drittel werden sie als schwer eingestuft. Mittels einer strukturierten Nachbeobachtung können diese frühzeitig erkannt und bei Bedarf behandelt werden. Ziel dieses Positionspapiers ist eine Aktualisierung des ersten Positionspapiers aus dem Jahre 2007. Hierbei werden die aktuellen Entwicklungen beschrieben und dargestellt, wie geeignete Nachsorgestrukturen und Nachsorgeeinrichtungen – unter Berücksichtigung der bestehenden Strukturen und dem steigenden Bedarf – geplant werden sollten.
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