Pediatric Oncology In Germany Research Articles

Availability and adaption of exercise programs in pediatric oncology during the COVID-19 pandemic and beyond: a nationwide follow-up survey of providers in Germany.

The COVID-19 pandemic has presented major challenges to clinical practice and delivery of care programs throughout all health care systems. Exercise programs, that are implemented in most centers for pediatric oncology in Germany, are a relatively new care program however with high clinical impact and health benefits. The impact and consequences of the pandemic on the delivery and availability of exercise programs in Germany for pediatric cancer patients and survivors are unknown. A national survey analyzed restrictions, challenges and novel approaches of exercise program delivery and scientific research. A two-stage online survey was distributed to providers of exercise programs (acute clinics, non-clinical institutions, rehabilitation facilities) via the established Network ActiveOncoKids. Data was collected during the pandemic in 2022 and 2023 using a combination of open and closed questions. In total, n = 27 (response rate: 82%) and n = 17 (response rate: 63%) providers participated in the first and second survey, respectively. Findings pointed out restrictions in 85% of all exercise programs in 2020 and 2021, with slight reductions in 2022. During pandemic, restrictions with major impact arose within exercise offers during follow-up and declined gradually. Whereas restrictions within the setting of acute therapy had medium or minor impact but persisted beyond. Delivery of provided exercise programs necessitated adaptions, including digital methods, supervised interventions from a distance and change of locations. The findings highlight the adaptability, the demand and the potential of exercise programs in pediatric oncology. We assume that exercise professionals have used the pandemic-related challenges to review and modify existing concepts and made adaptations according to local conditions and novel tools for the provision of exercise programs. Nevertheless, a conspicuous lack of exercise-related care has become evident in certain patients and survivors. Further expansion of programs is imperative to address and accommodate all pertinent needs.

Integrative medicine during the intensive phase of chemotherapy in pediatric oncology in Germany: a randomized controlled trial with 5-year follow up

BackgroundIntegrative medicine is used frequently alongside chemotherapy treatment in pediatric oncology, but little is known about the influence on toxicity. This German, multi-center, open-label, randomized controlled trial assessed the effects of complementary treatments on toxicity related to intensive-phase chemotherapy treatment in children aged 1–18 with the primary outcome of the toxicity sum score. Secondary outcomes were chemotherapy-related toxicity, overall and event-free survival after 5 years in study patients.MethodsIntervention and control were given standard chemotherapy according to malignancy & tumor type. The intervention arm was provided with anthroposophic supportive treatment (AST); given as anthroposophic base medication (AMP), as a base medication for all patients and additional on-demand treatment tailored to the intervention malignancy groups. The control was given no AMP. The toxicity sum score (TSS) was assessed using NCI-CTC scales.ResultsData of 288 patients could be analyzed. Analysis did not reveal any statistically significant differences between the AST and the control group for the primary endpoint or the toxicity measures (secondary endpoints). Furthermore, groups did not differ significantly in the five-year overall and event-free survival follow up.DiscussionIn this trial findings showed that AST was able to be safely administered in a clinical setting, although no beneficial effects of AST between group toxicity scores, overall or event-free survival were shown.

Contributing factors and outcomes of treatment refusal in pediatric oncology in Germany.

In Germany, about 1,800 new cases of pediatric cancer under 15 years of age are diagnosed each year and survival rates approach 80%. Although treatment is covered by health insurance and is thus available for all patients at no cost, treatment refusal and treatment discontinuation have been observed. However, no data providing numbers and outcomes for developed countries have been published thus far. A questionnaire-based survey was performed among German pediatric oncology centers to ascertain the number of treatment refusals among pediatric patients who were diagnosed between January 2008 and December 2009 in Germany. Questionnaires from 70 of 73 centers were available, and of these 13 centers reported a total of 15 cases of treatment refusal or discontinuation within this 2-year period. Five of the 15 patients died, 7 of 15 were still alive, and the current status of 3 of 15 patients was unknown. Diseases were heterogeneous. Six of the 15 parents refused treatment for their children initially, 8 of 15 discontinued during the course of treatment. Five patients were treated after parental custody had been withdrawn due to the lack of compliance. All these five patients survived. Parents' reasons given for refusal or discontinuation of treatment were related to personal health beliefs and coping strategies. Although treatment refusal or discontinuation is rare, it is accompanied by a high mortality rate. Parents' personal health beliefs play a primary role in treatment refusal or discontinuation in Germany. This emphasizes the importance of sustaining a functioning and mutually communicative physician-parent-patient relationship.

Parental informed consent in pediatric cancer trials: A population‐based survey in Germany

Ensuring adequate parental consent is a key issue of ethical practice in pediatric oncology. In Germany, however, knowledge about parental comprehension and satisfaction with the informed consent procedure is limited, and representative data on parents' perspectives are still missing. Based on data collected by means of a population-based survey, we evaluated the parental recall of the informed consent process for pediatric clinical trials, and how they rated the consent process retrospectively. A standardized survey was carried out among 1,465 parents whose children were first diagnosed in 2005 with a disease defined by ICCC-3 in the German Childhood Cancer Registry (response: 55.1%). The survey's primary objective was to assess how well parents were able to recall of the informed consent process. To evaluate the results, we set up a second survey among 581 parents who had given consent recently for their child's participation in a clinical trial (response: 53.5%). Approximately 81% of the parents in the population-based survey correctly remembered whether or not their child had been enrolled in a clinical trial or treated off-trial. The ability to recall accurately is significantly lower if the parents have a migration background or if their child was not a trial participant. However, parents who recalled the child's trial participation status incorrectly felt as adequately informed as parents who recalled it correctly. Our results identified weak points and vulnerable subgroups in the parental consent process in pediatric oncology in Germany.

Use of homeopathy in pediatric oncology in Germany.

Homeopathy is a frequently used complementary and alternative medicine (CAM) treatment. We present results comparing responses of homeopathy users (HUs) and users of other forms of CAM (NHUs) in pediatric oncology (PO) in Germany. Differences between these two groups (usage, associated demographic characteristics, previous experience with CAM) are investigated. 186 (45.2%) of the 367 CAM users were exposed to homeopathy. The treatment duration amounted to a median of 601 days for HUs and 282 days for NHUs. Parents with p (127; 76.5%) also used homeopathy for their child's cancer. Nonmedical practitioners played a considerably greater role as source of information than did treating physician. In the majority HUs received their prescriptions from nonmedical practitioners (56%; 29.4% of NHUs). HUs communicate more frequently with their physicians about the CAM-use (77.7% versus 65.2%) and recommend CAM more often than NHUs (94% versus 85.6%). Homeopathy is the most frequently used CAM treatment in PO in Germany. HUs sustain treatment and therapies considerably longer than NHUs. Most families who had used homeopathy before their child was diagnosed with cancer also used homeopathy for the treatment of their child's cancer. Compared to other CAM treatments, patient satisfaction with homeopathy appears to be very high.

Safety of anthroposophic supportive treatment in children with medulloblastoma receiving first-line therapy

Background The use of anthroposophic medicine (AM) is popular in Central Europe, especially in German-speaking countries. A survey regarding AM use in pediatric oncology in Germany estimates its prevalence among CAM users to be about 30%. Although these therapies are judged to be beneficial by many patients, there exist no data concerning safety and efficacy in this population. Several theoretical concerns have been published regarding tumor enhancement or promotion of metastatic dissemination. To test the safety of supportive anthroposophic treatment accompanying the first-line treatment in children with medulloblastoma, we performed a retrospective matched pair analysis of 17 patients with medulloblastoma treated concomitantly with a panel of anthroposophic medicines (AM) including mistletoe. All patients were treated according to the treatment protocols of the German HIT study group. Methods There were 12 male patients and 5 female patients, with a median age of 6.2 years (interquartile 4.1–7.3, range 1.8–15.7). The supportive anthroposophic treatment was given by pediatricians with specialized training in anthroposophic medicine. All patients underwent tumor resection followed by postoperative radiation and chemotherapy. The patients with AM were matched in a 1:2 ratio with 34 patients from the database of the German HIT study group with regard to the criteria diagnosis, age, status of metastatic dissemination, resection status and first-line therapy. Results The overall survival after 10 years was 58.33% for the AM group and 57.14% for the control group, i.e. showing only a marginal non-significant difference (stratified Cox regression, p =0.6023). Six medulloblastoma patients with AM had local tumor recurrences and 3 died due to tumor progression. In the control group 8 medulloblastoma patients had a local tumor recurrence and 7 patients died due to tumor progression. Event-free survival (including metastases) also did not differ between the groups (stratified Cox regression, p =0.4275). Conclusions Anthroposophic medicine consisting of different combinations of specific pharmacological and non-pharmacological interventions appears to be safe with respect to the first-line therapy. There is no evidence regarding tumor enhancement. The effectiveness of the supportive AM cannot be assessed based on these data.

Elternbefragung zur Anwendung alternativer und komplementärer Behandlungsmethoden in der Kinderonkologie in Deutschland

There are no published data on the use of complementary and alternative medicine (CAM) in pediatric oncology in Germany. All parents of children, who where diagnosed a disease registered in the German Childhood Registry in 2001 were sent a questionnaire to evaluate possible CAM-use. 1 602 questionnaires were sent to the families, from whom 1 063 sent the questionnaire back to us. They reported a 35 % CAM-use-rate. The probability to use CAM was positively influenced by preexisting experience with CAM, higher social level and poor prognosis. 71 % of the users discussed the CAM-use with a physician. The reason for CAM-use seldom was missing trust in conventional medicine. 89 % of the CAM-users would recommend CAM-use to other parents in a comparable situation. The reported CAM-use rate of 35 % in pediatric oncology in Germany is as reported in the international literature for other European countries. Essential parts of CAM-advise and -prescription are done by non-professionals, so that there is a need to get competence in CAM in pediatric oncology in Germany.

Towards shared patient records: An architecture for using routine data for nationwide research

Ubiquitous information is currently one of the most challenging slogans in medical informatics research. An adequate architecture for shared electronic patient records is needed which can use data for multiple purposes and which is extensible for new research questions. We introduce eardap as architecture for using routine data for nationwide clinical research in a multihospital environment. eardap can be characterized as terminology-based. Main advantage of our approach is the extensibility by new items and new research questions. Once the definition of items for a research question is finished, a consistent, corresponding database can be created without any informatics skills. Our experiences in pediatric oncology in Germany have shown the applicability of eardap. The functions of our core system were in routine clinical use in several hospitals. We validated the terminology management system (TMS) and the module generation tool with the basic data set of pediatric oncology. The multiple usability depends mainly on the quality of item planning in the TMS. High quality harmonization will lead to a higher amount of multiply used data. When using eardap, special emphasis is to be placed on interfaces to local hospital information systems and data security issues.

P1.23: Parental survey on the usage of alternative and complementary treatment methods in pediatric oncology in Germany ‐ a pilot study

Biometrical JournalVolume 46, Issue S1 p. 107-107 Poster Sessions Abstracts P1.23: Parental survey on the usage of alternative and complementary treatment methods in pediatric oncology in Germany - a pilot study Claudia Spix, Claudia Spix spix@imbei.uni-mainz.de Search for more papers by this authorAlfred Längler, Alfred LänglerSearch for more papers by this authorIrene Jung, Irene JungSearch for more papers by this authorPeter Kaatsch, Peter KaatschSearch for more papers by this author Claudia Spix, Claudia Spix spix@imbei.uni-mainz.de Search for more papers by this authorAlfred Längler, Alfred LänglerSearch for more papers by this authorIrene Jung, Irene JungSearch for more papers by this authorPeter Kaatsch, Peter KaatschSearch for more papers by this author First published: 17 March 2004 https://doi.org/10.1002/bimj.200490010AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Volume46, IssueS1Supplement: Abstracts of the Joint Meeting of the IBS-DR and the DAEMarch 2004Pages 107-107 RelatedInformation

A Meta-Model of Chemotherapy Planning in the Multi-Hospital/Multi-Trial-Center-Environment of Pediatric Oncology

Chemotherapy planning in pediatric oncology is complex and time-consuming. The correctness of the calculation according to state-of-the-art research is crucial for curing the child. Computer-assistance can be of great value. The objective of our research was to work out a meta-model of chemotherapy planning based on the Unified Modeling Language (UML). The meta-model is used for the development of an application system which serves as a knowledge-acquisition tool for chemotherapy protocols in pediatric oncology as well as for providing protocol-based care. We applied evolutionary prototyping, software reengineering techniques and grounded theory, a qualitative method in social research. We repeated the following steps several times over the years: Based on a requirements analysis (i) a meta-model was developed or adapted, respectively (ii). The meta-model served as a basis for implementing evolutionary prototypes (iii). Further requirements were identified (i) from clinical use of the systems. We developed a comprehensive UML-based meta-model for chemotherapy planning in pediatric oncology (chemoMM). We implemented it and introduced evolutionary prototypes (CATIPO and DOSPO) in several medical centers. Systematic validation of the prototypes enabled us to derive a final meta-model which covers the requirements that have turned out to be necessary in clinical routine. We have developed an application system that fits well into clinical routine of pediatric oncology in Germany. Validation results have shown that the implementation of the meta-model chemoMM can adequately support the knowledge acquisition process for protocol-based care.

Computer-assisted documentation and therapy planning in pediatric oncology--introduction of a nationwide solution

In Pediatric Oncology in Germany, 90% of the patients are treated according to multicenter clinical trials, which means an enormous effort for documentation in the participating clinics. In order to enable multiple use of data for patient records as well as for clinical trials a computer-based documentation system for pediatric oncology (DOSPO) is being developed, which can be used nationwide. DOSPO currently comprises a minimum basic data set, which represents the common core of all multicenter trials and which has been approved by the German Society for Pediatric Oncology and Hematology (GPOH). It is intended to enhance the documentation by specific items of each clinical trial. Functions for computer-aided chemotherapy planning and medical report writing have already been implemented in the documentation system. Various centers in Germany are currently validating the system in routine use.

History and present organization of pediatric oncology in Germany.

Click to increase image sizeClick to decrease image sizeKey Words: Germanhistoryoncologyorganizationpediatrics