Although international consensus has been reached on the implementation of open communication for children with cancer, few studies have captured the reality of their experiences of receiving explanations of their medical conditions. This study aimed to investigate the experiences of patients diagnosed with cancer during adolescence in terms of receiving explanations of their medical conditions from health-care professionals and parents, and to identify the trajectory of how adolescent children with cancer approach their treatment after receiving explanations.
Methods
Semi-structured interviews were conducted on 18 childhood cancer survivors who completed treatment between May 2024 and June 2025. The inclusion criteria included having been diagnosed with cancer between the ages of 11 and 18 years and having received an explanation of their condition. The grounded theory approach was used for the data analysis, which included a verbatim record and theoretical notes.
Results
Five categories were identified as Experiences of receiving explanations about medical conditions among adolescent children with cancer: “Receiving explanations of my medical condition”, “Mixed feelings”, “Concerns during hospitalization”, “I’ve got cancer”, and “The power to overcome treatment”.
Conclusions
The present findings suggest the need to provide psychological support during the process of explaining medical conditions to children. Furthermore, the concerns of children need to be captured in daily interactions, and practices that help them become aware of their disease and complete their treatment need to be developed.
{"title":"Experiences of receiving explanations about medical conditions among adolescent children with cancer: A qualitative study","authors":"Yuta Kogumazaka , Takako Miyamura , Tae Kawahara , Tomoko Abe , Saaya Niino , Akemi Yamazaki","doi":"10.1016/j.ejcped.2026.100486","DOIUrl":"10.1016/j.ejcped.2026.100486","url":null,"abstract":"<div><h3>Background</h3><div>Although international consensus has been reached on the implementation of open communication for children with cancer, few studies have captured the reality of their experiences of receiving explanations of their medical conditions. This study aimed to investigate the experiences of patients diagnosed with cancer during adolescence in terms of receiving explanations of their medical conditions from health-care professionals and parents, and to identify the trajectory of how adolescent children with cancer approach their treatment after receiving explanations.</div></div><div><h3>Methods</h3><div>Semi-structured interviews were conducted on 18 childhood cancer survivors who completed treatment between May 2024 and June 2025. The inclusion criteria included having been diagnosed with cancer between the ages of 11 and 18 years and having received an explanation of their condition. The grounded theory approach was used for the data analysis, which included a verbatim record and theoretical notes.</div></div><div><h3>Results</h3><div>Five categories were identified as Experiences of receiving explanations about medical conditions among adolescent children with cancer: “Receiving explanations of my medical condition”, “Mixed feelings”, “Concerns during hospitalization”, “I’ve got cancer”, and “The power to overcome treatment”.</div></div><div><h3>Conclusions</h3><div>The present findings suggest the need to provide psychological support during the process of explaining medical conditions to children. Furthermore, the concerns of children need to be captured in daily interactions, and practices that help them become aware of their disease and complete their treatment need to be developed.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"7 ","pages":"Article 100486"},"PeriodicalIF":0.0,"publicationDate":"2026-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023597","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-14DOI: 10.1016/j.ejcped.2026.100485
Natasja Dors , Martine van Grotel , Eline Zijtregtop , Nathalie van der Salm , Laura Keukens , Selma Lavrijssen , Charlotte Drykoningen , Anne Jonge Poerink , Rod Thompson , Jenneke Homan , Menco Weismuller , Wendy Nix , Hester Blufpand , Annemieke van der Wey , Daniëlle Martens , Marion Hekkelaan , Lotte Helder , Wouter Kollen , Max van Noesel , Marije P. Hennus
Background
In 2018, the Netherlands centralized all pediatric oncology care at the Prinses Máxima Center (Máxima), supported by a national network of 14 Shared Care centers. These centers deliver non-intensive treatment and supportive care closer to home, enabling a hybrid model of centralized expertise and regional accessibility. While structurally in place, little is known about how regional pediatricians experience this collaboration or which factors they consider essential to its success.
Methods
This national qualitative multiple case study explored interprofessional collaboration between the Máxima and its Shared Care partners, from the perspective of pediatricians in all 14 regional centers. Semi-structured interviews were conducted, transcribed, and analyzed inductively using ATLAS.ti. Analysis was informed by Kaats & Opheij’s collaboration framework, encompassing shared ambition, mutual interests, interpersonal relationships, structured collaboration, and meaningful processes. Peer debriefing was used to enhance trustworthiness and ensure clinical relevance.
Results
Participants emphasized that close collaboration is indispensable for delivering safe, high-quality pediatric oncology care. Enabling factors included mutual trust, personal familiarity, timely and clear communication, and professional recognition. Challenges were identified in areas such as inconsistent policy implementation, opaque decision-making, and insufficient acknowledgment of local expertise. Many called for differentiated, context-sensitive care agreements rather than one-size-fits-all approaches.
Conclusion
Effective shared care requires more than structural alignment: it demands investment in professional relationships, shared goals, and adaptive processes. These findings offer actionable insights to improve collaboration within the Dutch model and provide transferable lessons for other countries navigating centralized care in highcomplex, low-volume pediatric specialties.
{"title":"Making shared care work: A national qualitative case study on collaborative practice in pediatric oncology","authors":"Natasja Dors , Martine van Grotel , Eline Zijtregtop , Nathalie van der Salm , Laura Keukens , Selma Lavrijssen , Charlotte Drykoningen , Anne Jonge Poerink , Rod Thompson , Jenneke Homan , Menco Weismuller , Wendy Nix , Hester Blufpand , Annemieke van der Wey , Daniëlle Martens , Marion Hekkelaan , Lotte Helder , Wouter Kollen , Max van Noesel , Marije P. Hennus","doi":"10.1016/j.ejcped.2026.100485","DOIUrl":"10.1016/j.ejcped.2026.100485","url":null,"abstract":"<div><h3>Background</h3><div>In 2018, the Netherlands centralized all pediatric oncology care at the Prinses Máxima Center (Máxima), supported by a national network of 14 Shared Care centers. These centers deliver non-intensive treatment and supportive care closer to home, enabling a hybrid model of centralized expertise and regional accessibility. While structurally in place, little is known about how regional pediatricians experience this collaboration or which factors they consider essential to its success.</div></div><div><h3>Methods</h3><div>This national qualitative multiple case study explored interprofessional collaboration between the Máxima and its Shared Care partners, from the perspective of pediatricians in all 14 regional centers. Semi-structured interviews were conducted, transcribed, and analyzed inductively using ATLAS.ti. Analysis was informed by Kaats & Opheij’s collaboration framework, encompassing shared ambition, mutual interests, interpersonal relationships, structured collaboration, and meaningful processes. Peer debriefing was used to enhance trustworthiness and ensure clinical relevance.</div></div><div><h3>Results</h3><div>Participants emphasized that close collaboration is indispensable for delivering safe, high-quality pediatric oncology care. Enabling factors included mutual trust, personal familiarity, timely and clear communication, and professional recognition. Challenges were identified in areas such as inconsistent policy implementation, opaque decision-making, and insufficient acknowledgment of local expertise. Many called for differentiated, context-sensitive care agreements rather than one-size-fits-all approaches.</div></div><div><h3>Conclusion</h3><div>Effective shared care requires more than structural alignment: it demands investment in professional relationships, shared goals, and adaptive processes. These findings offer actionable insights to improve collaboration within the Dutch model and provide transferable lessons for other countries navigating centralized care in highcomplex, low-volume pediatric specialties.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"7 ","pages":"Article 100485"},"PeriodicalIF":0.0,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146023598","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-13DOI: 10.1016/j.ejcped.2026.100484
Kim P.J. Schellekens , Andrea Ferrari , Michael T. Meister , C. Michel Zwaan , Susanne A. Gatz , Max M. van Noesel , Michela Casanova , Reineke A. Schoot
Neoadjuvant systemic treatment for paediatric patients with soft tissue sarcomas (STS) consists of conventional chemotherapy, predominantly ifosfamide and doxorubicin, with a limited role for innovative therapies. Many multi-tyrosine kinase inhibitors (mTKIs) have been developed in the past decades for the treatment of various types of malignancies. Over a decade ago, the mTKI pazopanib was authorized by the EMA and FDA for the treatment of adults with STS. Paediatric development of innovative treatments often follows years after the first marketing authorisations in adults has been obtained. To date, a series of clinical trials have been conducted investigating the value of mTKIs in paediatric patients with STS. Nevertheless, the positioning of mTKIs in the treatment of paediatric STS remains unclear and selection of mTKIs for clinical trials is more often made on grounds of availability rather than on mechanism of action, efficacy data, or toxicity profile. In this manuscript, we provide an overview of studies evaluating mTKIs in paediatric, adolescent, and adult STS patients, aiming to assist in prioritization of future clinical trials in paediatric STS. We performed a systematic literature review with the purpose of collecting data on activity and safety. The results of 107 relevant clinical trials, including 23 trials conducted in the paediatric population and 84 trials in the adult population, were critically assessed and summarized (Appendix 1). Accelerating the development of innovative treatments in patients with such ultra-rare diseases will require innovative clinical trial designs, and international collaboration is necessary. Considering the age distribution of STS, collaboration between paediatric oncologists and medical oncologists should be considered.
{"title":"Multi-tyrosine kinase inhibitors in paediatric soft tissue sarcoma – A review","authors":"Kim P.J. Schellekens , Andrea Ferrari , Michael T. Meister , C. Michel Zwaan , Susanne A. Gatz , Max M. van Noesel , Michela Casanova , Reineke A. Schoot","doi":"10.1016/j.ejcped.2026.100484","DOIUrl":"10.1016/j.ejcped.2026.100484","url":null,"abstract":"<div><div>Neoadjuvant systemic treatment for paediatric patients with soft tissue sarcomas (STS) consists of conventional chemotherapy, predominantly ifosfamide and doxorubicin, with a limited role for innovative therapies. Many multi-tyrosine kinase inhibitors (mTKIs) have been developed in the past decades for the treatment of various types of malignancies. Over a decade ago, the mTKI pazopanib was authorized by the EMA and FDA for the treatment of adults with STS. Paediatric development of innovative treatments often follows years after the first marketing authorisations in adults has been obtained. To date, a series of clinical trials have been conducted investigating the value of mTKIs in paediatric patients with STS. Nevertheless, the positioning of mTKIs in the treatment of paediatric STS remains unclear and selection of mTKIs for clinical trials is more often made on grounds of availability rather than on mechanism of action, efficacy data, or toxicity profile. In this manuscript, we provide an overview of studies evaluating mTKIs in paediatric, adolescent, and adult STS patients, aiming to assist in prioritization of future clinical trials in paediatric STS. We performed a systematic literature review with the purpose of collecting data on activity and safety. The results of 107 relevant clinical trials, including 23 trials conducted in the paediatric population and 84 trials in the adult population, were critically assessed and summarized (Appendix 1). Accelerating the development of innovative treatments in patients with such ultra-rare diseases will require innovative clinical trial designs, and international collaboration is necessary. Considering the age distribution of STS, collaboration between paediatric oncologists and medical oncologists should be considered.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"7 ","pages":"Article 100484"},"PeriodicalIF":0.0,"publicationDate":"2026-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145978274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-09DOI: 10.1016/j.ejcped.2026.100482
Dorine Poelmans , Jaques van Heerden
Purpose
The survival rate for paediatric hematological malignancies has improved significantly, shifting focus to Health Related Quality of Life (HRQOL). The objectives of this study was to investigate the impact of infection prevention lifestyle adjustments on HRQOL and to determine whether these adjustments were feasible and applicable in practice.
Methodology
A prospective quantitative cross-sectional study was done, in which 21 children between 6 and 18 years old, treated for an hematological malignancy at the University Hospital Antwerp were interviewed. The questionnaire was developed in accordance with PedsQL™, consisting of 27, five-point Likert scale questions.
Results
The impact of lifestyle modifications to avoid infections on the HRQOL was assessed using a physical, social, emotional and school domain, of which the median was 3.2 [IQR 2.6; 3.7], 3.5 [IQR 3; 4], 3.5 [IQR 2.9; 4.6] and 3.7 [IQR 3.3; 4.3] respectively. These corresponded to 'rarely to sometimes' having difficulty complying with these rules. The feasibility and applicability of complying in practice was tested in the physical, social and school domain, of which the median was 1.2 [IQR 1; 1.5], 1 [IQR 1; 1.5] and 1 [IQR 1; 1] respectively. These corresponded to 'always' being feasible and applicable.
Conclusion
The first study showed that HRQOL was impacted by lifestyle modifications to avoid infections and influenced in every domain, especially the physical domain. Although children and/or their proxy indicated that the guidelines were feasible and applicable in practice the evidence of these recommendations must be evaluated.
{"title":"Evaluation of the impact of adherence to infection prevention measures on the quality of life in children with hematologic malignancies","authors":"Dorine Poelmans , Jaques van Heerden","doi":"10.1016/j.ejcped.2026.100482","DOIUrl":"10.1016/j.ejcped.2026.100482","url":null,"abstract":"<div><h3>Purpose</h3><div>The survival rate for paediatric hematological malignancies has improved significantly, shifting focus to Health Related Quality of Life (HRQOL). The objectives of this study was to investigate the impact of infection prevention lifestyle adjustments on HRQOL and to determine whether these adjustments were feasible and applicable in practice.</div></div><div><h3>Methodology</h3><div>A prospective quantitative cross-sectional study was done, in which 21 children between 6 and 18 years old, treated for an hematological malignancy at the University Hospital Antwerp were interviewed. The questionnaire was developed in accordance with PedsQL™, consisting of 27, five-point Likert scale questions.</div></div><div><h3>Results</h3><div>The impact of lifestyle modifications to avoid infections on the HRQOL was assessed using a physical, social, emotional and school domain, of which the median was 3.2 [IQR 2.6; 3.7], 3.5 [IQR 3; 4], 3.5 [IQR 2.9; 4.6] and 3.7 [IQR 3.3; 4.3] respectively. These corresponded to 'rarely to sometimes' having difficulty complying with these rules. The feasibility and applicability of complying in practice was tested in the physical, social and school domain, of which the median was 1.2 [IQR 1; 1.5], 1 [IQR 1; 1.5] and 1 [IQR 1; 1] respectively. These corresponded to 'always' being feasible and applicable.</div></div><div><h3>Conclusion</h3><div>The first study showed that HRQOL was impacted by lifestyle modifications to avoid infections and influenced in every domain, especially the physical domain. Although children and/or their proxy indicated that the guidelines were feasible and applicable in practice the evidence of these recommendations must be evaluated.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"7 ","pages":"Article 100482"},"PeriodicalIF":0.0,"publicationDate":"2026-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145978275","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-16DOI: 10.1016/j.ejcped.2025.100481
Eva-Maria Wild , Gianluca Piccolo , Eleni Syrimi , Rahel Kasteler , Bob Philips , Gilles Vassal , Ciara Sheehan , Lejla Kameric , Theodora Armenkova , Katrin Scheinemann , Maria Otth
Background
Childhood cancer survival rates have improved over the last decades. Nevertheless, childhood cancer treatment is associated with painful interventions needed for disease monitoring or treatment. It is therefore crucial to ensure appropriate pain control for painful interventions. This European survey aims to map the approaches to manage such interventions in children and adolescents with cancer.
Methods
An online survey was sent to members of the European Society of Paediatric Oncology, asking the way potentially painful interventions are being managed. Interventions included lumbar puncture, bone marrow aspiration and biopsy, removal of drainages, insertion and removal of central venous lines, puncture of porth-a-cath or Ommaya reservoir, tumour biopsy, and insertion of nasogastric tube. Proposed approaches to pain management included local analgesia, systemic analgesia alone, systemic analgesia with sedation administrated by paediatric oncologists or anaesthesiologists, distraction techniques, and other methods. We further asked about drugs used and types of distraction.
Results
A total of 326 health care professionals responded, representing 37 countries. The proportion of participants reporting that an intervention is performed without any pain management ranged from one participant each for bone marrow aspiration/biopsy and tumor biopsy (0,3 %), to 101 participants (31 %) for nasogastric tube insertion. The intensity of analgesia or depth of sedation per intervention is heterogeneous, so are the drugs used.
Conclusion
The heterogenous results in use of analgesia or sedation during procedures indicate an unmet need. These results highlight the need for guidelines and their implementation in clinical practice. No child or adolescent undergoing cancer treatment should suffer from procedure-related pain.
{"title":"Pain management during interventions in paediatric oncology in Europe – Results from a pan-European survey","authors":"Eva-Maria Wild , Gianluca Piccolo , Eleni Syrimi , Rahel Kasteler , Bob Philips , Gilles Vassal , Ciara Sheehan , Lejla Kameric , Theodora Armenkova , Katrin Scheinemann , Maria Otth","doi":"10.1016/j.ejcped.2025.100481","DOIUrl":"10.1016/j.ejcped.2025.100481","url":null,"abstract":"<div><h3>Background</h3><div>Childhood cancer survival rates have improved over the last decades. Nevertheless, childhood cancer treatment is associated with painful interventions needed for disease monitoring or treatment. It is therefore crucial to ensure appropriate pain control for painful interventions. This European survey aims to map the approaches to manage such interventions in children and adolescents with cancer.</div></div><div><h3>Methods</h3><div>An online survey was sent to members of the European Society of Paediatric Oncology, asking the way potentially painful interventions are being managed. Interventions included lumbar puncture, bone marrow aspiration and biopsy, removal of drainages, insertion and removal of central venous lines, puncture of porth-a-cath or Ommaya reservoir, tumour biopsy, and insertion of nasogastric tube. Proposed approaches to pain management included local analgesia, systemic analgesia alone, systemic analgesia with sedation administrated by paediatric oncologists or anaesthesiologists, distraction techniques, and other methods. We further asked about drugs used and types of distraction.</div></div><div><h3>Results</h3><div>A total of 326 health care professionals responded, representing 37 countries. The proportion of participants reporting that an intervention is performed without any pain management ranged from one participant each for bone marrow aspiration/biopsy and tumor biopsy (0,3 %), to 101 participants (31 %) for nasogastric tube insertion. The intensity of analgesia or depth of sedation per intervention is heterogeneous, so are the drugs used.</div></div><div><h3>Conclusion</h3><div>The heterogenous results in use of analgesia or sedation during procedures indicate an unmet need. These results highlight the need for guidelines and their implementation in clinical practice. No child or adolescent undergoing cancer treatment should suffer from procedure-related pain.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"7 ","pages":"Article 100481"},"PeriodicalIF":0.0,"publicationDate":"2025-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145765800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.1016/j.ejcped.2025.100479
Jikke Wams , Jaap den Hartogh , Cherine Mathot , Jeroen te Dorsthorst , Marie-Therese Gubi , Kerstin Krottendorfer , Ulrike Leiss , Esther Lasheras Soria , Begonya Nafria Escalera , Urška Košir , Katie Rizvi , Carina Schneider , Barbara Brunmair , Ismay de Beijer , Renée L. Mulder , Leontien C.M. Kremer , Helena J.H. van der Pal , on behalf of the EU-CAYAS-NET consortium
Background
A successful transition from child-centred to adult-oriented healthcare for survivors of childhood and adolescent cancer is essential to help them engage in lifelong surveillance in survivorship care. Information on their needs and preferences for the transition process is needed to identify key components for a successful transition.
Objective
To describe the transition needs and preferences of young cancer survivors, their parents, and healthcare providers.
Methods
Three in-person peer visits to best-practice long-term follow-up care centres in Europe were conducted. In these visits, the needs and preferences of young cancer survivors, their parents, and healthcare providers were collected through interactive sessions and structured documentation. The outcomes were analysed inductively using thematic analysis, resulting in a list of unique needs and preferences.
Results
Sixty-five participants, including 32 survivors, six parents, 21 healthcare providers, and six researchers, shared 188 needs and preferences, leading to the identification of 58 distinct transition needs and preferences. Participants stressed the need for structured, patient-centred transition processes with clear coordination and planning, following a holistic approach. Key support needs include lifestyle, psychosocial, and employment assistance. Improved access to reliable information, tailored education, and readiness-based transfers were emphasised.
Conclusion
Our findings highlight the need for personalised and ongoing coordination and support for survivors and their families during transition. Strengthening informational and educational transition resources are crucial to address gaps experienced by patients and caregivers. These insights will be implemented into the evidence-based European transition guideline from the EU-CAYAS-NET project.
{"title":"Transition needs and preferences identified during peer visits to three European best-practice CAYA cancer Long-Term Follow-Up care centres: An EU-CAYAS-NET project","authors":"Jikke Wams , Jaap den Hartogh , Cherine Mathot , Jeroen te Dorsthorst , Marie-Therese Gubi , Kerstin Krottendorfer , Ulrike Leiss , Esther Lasheras Soria , Begonya Nafria Escalera , Urška Košir , Katie Rizvi , Carina Schneider , Barbara Brunmair , Ismay de Beijer , Renée L. Mulder , Leontien C.M. Kremer , Helena J.H. van der Pal , on behalf of the EU-CAYAS-NET consortium","doi":"10.1016/j.ejcped.2025.100479","DOIUrl":"10.1016/j.ejcped.2025.100479","url":null,"abstract":"<div><h3>Background</h3><div>A successful transition from child-centred to adult-oriented healthcare for survivors of childhood and adolescent cancer is essential to help them engage in lifelong surveillance in survivorship care. Information on their needs and preferences for the transition process is needed to identify key components for a successful transition.</div></div><div><h3>Objective</h3><div>To describe the transition needs and preferences of young cancer survivors, their parents, and healthcare providers.</div></div><div><h3>Methods</h3><div>Three in-person peer visits to best-practice long-term follow-up care centres in Europe were conducted. In these visits, the needs and preferences of young cancer survivors, their parents, and healthcare providers were collected through interactive sessions and structured documentation. The outcomes were analysed inductively using thematic analysis, resulting in a list of unique needs and preferences.</div></div><div><h3>Results</h3><div>Sixty-five participants, including 32 survivors, six parents, 21 healthcare providers, and six researchers, shared 188 needs and preferences, leading to the identification of 58 distinct transition needs and preferences. Participants stressed the need for structured, patient-centred transition processes with clear coordination and planning, following a holistic approach. Key support needs include lifestyle, psychosocial, and employment assistance. Improved access to reliable information, tailored education, and readiness-based transfers were emphasised.</div></div><div><h3>Conclusion</h3><div>Our findings highlight the need for personalised and ongoing coordination and support for survivors and their families during transition. Strengthening informational and educational transition resources are crucial to address gaps experienced by patients and caregivers. These insights will be implemented into the evidence-based European transition guideline from the EU-CAYAS-NET project.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"6 ","pages":"Article 100479"},"PeriodicalIF":0.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145623419","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.1016/j.ejcped.2025.100480
Ekaterina Aleshchenko , Pietro Trocchi , Christian Apfelbacher , Katja Baust , Gabriele Calaminus , Patrik Droege , Dirk Horenkamp-Sonntag , Peter Ihle , Melanie Klein , Jutta Kuepper-Nybelen , Thorsten Langer , Christian Luepkes , Ursula Marschall , Hiltrud Merzenich , Thomas Ruhnke , Claudia Spix , Enno Swart , Cecile Ronckers
Background
As survival rates for childhood cancer improve, understanding long-term outcomes and healthcare needs of childhood cancer survivors (CCS) is essential. In Germany, such data have been limited.
Objective
This study aimed to describe demographic and clinical characteristics of a long-term CCS cohort and assess healthcare utilisation patterns based on cancer registry and statutory health insurance (SHI) claims data.
Methods
The VersKiK study linked GCCR data with claims from 13 SHI providers, covering 69 % of the German statutorily insured population. The analysis of healthcare utilisation included 11,863 CCS diagnosed since 1991–2011, known to be alive in 01/2017 and maintained uninterrupted statutory health insurance coverage during 2017–2021.Healthcare utilisation was compared to a 1:3-matched comparison group (matching factors insurance duration, sex, birth year, and region).
Results
Long-term CCS had significantly higher healthcare utilisation across all metrics. They experienced 1.1–5.1 times more outpatient visits, hospital stays, medication prescriptions, and episodes of work incapacity than the control group. Utilisation varied considerably by cancer type, age at diagnosis, sex, and region. Survivors of CNS tumours, bone tumours, and soft tissue sarcomas showed the highest service use. Differences in utilisation between survivors and controls were greater among younger than older survivors.
Conclusions
This large, population-based record linkage study highlights significant differences in healthcare use between CCS and the general population, emphasising the need for evidence-based policies and tailored clinical care models. Further detailed analyses of claims data in this context can guide improvements in long-term care access, coordination, and outcomes for survivors.
{"title":"Characterising childhood cancer survivors in Germany: A retrospective observational study on demographic, clinical, and healthcare utilisation patterns","authors":"Ekaterina Aleshchenko , Pietro Trocchi , Christian Apfelbacher , Katja Baust , Gabriele Calaminus , Patrik Droege , Dirk Horenkamp-Sonntag , Peter Ihle , Melanie Klein , Jutta Kuepper-Nybelen , Thorsten Langer , Christian Luepkes , Ursula Marschall , Hiltrud Merzenich , Thomas Ruhnke , Claudia Spix , Enno Swart , Cecile Ronckers","doi":"10.1016/j.ejcped.2025.100480","DOIUrl":"10.1016/j.ejcped.2025.100480","url":null,"abstract":"<div><h3>Background</h3><div>As survival rates for childhood cancer improve, understanding long-term outcomes and healthcare needs of childhood cancer survivors (CCS) is essential. In Germany, such data have been limited.</div></div><div><h3>Objective</h3><div>This study aimed to describe demographic and clinical characteristics of a long-term CCS cohort and assess healthcare utilisation patterns based on cancer registry and statutory health insurance (SHI) claims data.</div></div><div><h3>Methods</h3><div>The VersKiK study linked GCCR data with claims from 13 SHI providers, covering 69 % of the German statutorily insured population. The analysis of healthcare utilisation included 11,863 CCS diagnosed since 1991–2011, known to be alive in 01/2017 and maintained uninterrupted statutory health insurance coverage during 2017–2021.Healthcare utilisation was compared to a 1:3-matched comparison group (matching factors insurance duration, sex, birth year, and region).</div></div><div><h3>Results</h3><div>Long-term CCS had significantly higher healthcare utilisation across all metrics. They experienced 1.1–5.1 times more outpatient visits, hospital stays, medication prescriptions, and episodes of work incapacity than the control group. Utilisation varied considerably by cancer type, age at diagnosis, sex, and region. Survivors of CNS tumours, bone tumours, and soft tissue sarcomas showed the highest service use. Differences in utilisation between survivors and controls were greater among younger than older survivors.</div></div><div><h3>Conclusions</h3><div>This large, population-based record linkage study highlights significant differences in healthcare use between CCS and the general population, emphasising the need for evidence-based policies and tailored clinical care models. Further detailed analyses of claims data in this context can guide improvements in long-term care access, coordination, and outcomes for survivors.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"6 ","pages":"Article 100480"},"PeriodicalIF":0.0,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145623297","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-08DOI: 10.1016/j.ejcped.2025.100478
Caroline Atkinson , Alvin Kamili , Carole M. Tactacan , Nisitha Jayatilleke , Sebastian P.A. Rosser , Federica Saletta , Christine C. Gana , Philipp Graber , Amanda Wanninayaka , Rosa Mistica C. Ignacio , Maria Kavallaris , Andrew J. Gifford , Richard B. Lock , Murray D. Norris , Michelle Haber , Chelsea Mayoh , Christa E. Nath , Toby N. Trahair , Jamie I. Fletcher
Background
Half of all children with high-risk neuroblastoma progress or relapse. We identified ABCB1, encoding for the ATP binding cassette transporter P-glycoprotein (P-gp), as a candidate drug resistance mechanism based on differential expression in survivors and non-survivors and investigated whether P-gp expression limits the effectiveness of chemotherapy.
Methods
P-gp/ABCB1 expression and regulation were assessed in tumours, PDX models in NSG mice, and cell lines by RNA-sequencing, immunohistochemistry, western blotting and through publicly available ChIP-Seq and RNA-Seq data. Response to standard-of-care induction therapies and targeted agents was assessed in vitro and in vivo using cell line and PDX models with genetic and pharmacological P-gp inhibition.
Results
P-gp expression is common in high-risk neuroblastoma and elevated compared to other cancers. High relative expression at diagnosis is associated with poorer outcome, consistent with drug efflux. Pharmacological or genetic targeting of P-gp partially restores sensitivity of neuroblastoma cells to vincristine, doxorubicin, etoposide, and some targeted agents, but not to the ALK inhibitors crizotinib, ceritinib, alectinib and lorlatinib and sensitizes neuroblastoma xenografts to vincristine, extending survival.
Conclusions
P-gp is a clinically relevant drug resistance mechanism for high-risk neuroblastoma. Tumour P-gp levels could inform treatment options for individual patients to avoid ineffective treatments and unnecessary toxicities.
{"title":"P-glycoprotein as a chemotherapy resistance mechanism and biomarker of poor response in high-risk neuroblastoma","authors":"Caroline Atkinson , Alvin Kamili , Carole M. Tactacan , Nisitha Jayatilleke , Sebastian P.A. Rosser , Federica Saletta , Christine C. Gana , Philipp Graber , Amanda Wanninayaka , Rosa Mistica C. Ignacio , Maria Kavallaris , Andrew J. Gifford , Richard B. Lock , Murray D. Norris , Michelle Haber , Chelsea Mayoh , Christa E. Nath , Toby N. Trahair , Jamie I. Fletcher","doi":"10.1016/j.ejcped.2025.100478","DOIUrl":"10.1016/j.ejcped.2025.100478","url":null,"abstract":"<div><h3>Background</h3><div>Half of all children with high-risk neuroblastoma progress or relapse. We identified <em>ABCB1,</em> encoding for the ATP binding cassette transporter P-glycoprotein (P-gp), as a candidate drug resistance mechanism based on differential expression in survivors and non-survivors and investigated whether P-gp expression limits the effectiveness of chemotherapy.</div></div><div><h3>Methods</h3><div>P-gp/<em>ABCB1</em> expression and regulation were assessed in tumours, PDX models in NSG mice, and cell lines by RNA-sequencing, immunohistochemistry, western blotting and through publicly available ChIP-Seq and RNA-Seq data. Response to standard-of-care induction therapies and targeted agents was assessed <em>in vitro</em> and <em>in vivo</em> using cell line and PDX models with genetic and pharmacological P-gp inhibition.</div></div><div><h3>Results</h3><div>P-gp expression is common in high-risk neuroblastoma and elevated compared to other cancers. High relative expression at diagnosis is associated with poorer outcome, consistent with drug efflux. Pharmacological or genetic targeting of P-gp partially restores sensitivity of neuroblastoma cells to vincristine, doxorubicin, etoposide, and some targeted agents, but not to the ALK inhibitors crizotinib, ceritinib, alectinib and lorlatinib and sensitizes neuroblastoma xenografts to vincristine, extending survival.</div></div><div><h3>Conclusions</h3><div>P-gp is a clinically relevant drug resistance mechanism for high-risk neuroblastoma. Tumour P-gp levels could inform treatment options for individual patients to avoid ineffective treatments and unnecessary toxicities.</div></div>","PeriodicalId":94314,"journal":{"name":"EJC paediatric oncology","volume":"6 ","pages":"Article 100478"},"PeriodicalIF":0.0,"publicationDate":"2025-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145527989","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-04DOI: 10.1016/j.ejcped.2025.100331
Patrycja Fryzik, Li-Ting Chen, Evelyn S. Hanemaaijer, Ireen J. Kal, Tito Candelli, Brigit M. te Pas, Nina Epskamp, Valerie de Haas, Marijn Scheijde-Vermeulen, Wim J. de Jonge, Thanasis Margaritis, Mirjam Belderbos
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