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Contains fulltext : 291775.pdf (Publisher’s version ) (Open Access) BACKGROUND: Childhood cancer survivors (CCSs) have an increased risk of developing chronic health conditions. Evidence suggests that poor health behaviors further increase health risks. Healthcare professionals (HCPs) involved in survivorship care have a key role in providing health behavior support (HBS) but can feel limited in their ability to do so. This study aims to explore European HCPs perceived facilitators and barriers to providing HBS to CCSs. METHODS: Five focus groups with 30 HCPs from survivorship care clinics across Europe were conducted. Topic guides were informed by the Theoretical Domains Framework (TDF) to capture domains that may influence provision of HBS. Focus groups were analyzed with thematic analysis. Transcripts were inductively coded, after which axial coding was applied to organize codes into categories. Finally, categories were mapped onto the TDF domains. RESULTS: Nine TDF domains were identified in the data. The most commonly reported TDF domains were "Knowledge", "Skills", and "Environmental context and resources". HCPs indicated that their lack of knowledge of the association between late effects and health behaviors, besides time restrictions, were barriers to HBS. Facilitators for HBS included possession of skills needed to pass on health behavior information, good clinic organization, and an established network of HCPs. CONCLUSIONS: This study identified education and training of HCPs as key opportunities to improve HBS. Survivorship care clinics should work towards establishing well-integrated structured care with internal and external networks including HBS being part of routine care. Proper understanding of facilitators and barriers should lead to better survivorship care for CCSs.

Background The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. Methods The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline–based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. Conclusions The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Background: Overall, mortality beyond five years after diagnosis of childhood or adolescent cancer has dropped sharply over the last 60 years. Yet mortality in long-term survivors continues to be substantially higher than in the general population. So far, little is known about the mortality risk beyond[for full text, please go to the a.m. URL], 64. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e.V. (GMDS)

Objective: The intensive and long‐lasting experience of childhood cancer is a tremendous stressor for the parental relationship. We aimed to (1) compare civil status and partner relationship of parents of long‐term childhood cancer survivors with population‐based comparisons, (2) identify cancer‐related characteristics associated with not being married, and (3) evaluate the quality of the partner relationship. Methods: We sent questionnaires to parents of survivors aged ≤16 years at diagnosis and ≥20 years at study. Population‐based comparisons were derived from a random sample of the general population (≥1 child aged ≥20 years) and standardized by sociodemographic characteristics of survivor parents. We used logistic regression to identify cancer‐related characteristics associated with not being married. The quality of the partner relationship was evaluated using the relationship‐specific attachment scale for adults assessing the dimensions security (secure‐fearful) and dependency (dependent‐independent). Results: A total of 784 parents (58.9% mothers) of 512 survivors (response rate: 44.0%) and 471 comparison parents completed the questionnaire. Parents of survivors were less often divorced/separated (9.0% vs 17.5%, P < 0.001) and more often in a partner relationship (89.9% vs 85.0%, P = 0.010) than comparisons. Not being married was not associated with cancer‐related characteristics. Parents of survivors reported similar security (P = 0.444) but higher dependency (P = 0.032) within the partner relationship than comparisons. In both populations, fathers indicated higher security and dependency than mothers. Conclusions: Long after the diagnosis of cancer in their child, parents' relationship appears similar as in parents of the general population. The increased dependency reported by parents of survivors suggests that they managed their child's disease as a team.

Background Cisplatin and carboplatin are widely used in paediatric cancer treatment. Cisplatin especially can have long-term side effects, including sensorineural hearing loss. The aim of this study is to define the risk factors for platin-related ototoxicity. Materials and Methods As part [for full text, please go to the a.m. URL], 36. Wissenschaftliche Jahrestagung der Deutschen Gesellschaft für Phoniatrie und Pädaudiologie (DGPP)

Objective: The intensive and long‐lasting experience of childhood cancer is a tremendous stressor for the parental relationship. We aimed to (1) compare civil status and partner relationship of parents of long‐term childhood cancer survivors with population‐based comparisons, (2) identify cancer‐related characteristics associated with not being married, and (3) evaluate the quality of the partner relationship. Methods: We sent questionnaires to parents of survivors aged ≤16 years at diagnosis and ≥20 years at study. Population‐based comparisons were derived from a random sample of the general population (≥1 child aged ≥20 years) and standardized by sociodemographic characteristics of survivor parents. We used logistic regression to identify cancer‐related characteristics associated with not being married. The quality of the partner relationship was evaluated using the relationship‐specific attachment scale for adults assessing the dimensions security (secure‐fearful) and dependency (dependent‐independent). Results: A total of 784 parents (58.9% mothers) of 512 survivors (response rate: 44.0%) and 471 comparison parents completed the questionnaire. Parents of survivors were less often divorced/separated (9.0% vs 17.5%, P < 0.001) and more often in a partner relationship (89.9% vs 85.0%, P = 0.010) than comparisons. Not being married was not associated with cancer‐related characteristics. Parents of survivors reported similar security (P = 0.444) but higher dependency (P = 0.032) within the partner relationship than comparisons. In both populations, fathers indicated higher security and dependency than mothers. Conclusions: Long after the diagnosis of cancer in their child, parents' relationship appears similar as in parents of the general population. The increased dependency reported by parents of survivors suggests that they managed their child's disease as a team.

Background The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. Methods The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline–based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. Conclusions The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Background The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. Methods The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline–based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. Conclusions The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions., + ID der Publikation: unilu_54299 + Sprache: Englisch + Bemerkungen: doi: 10.1016/j.ejca.2021.05.030 + Letzte Aktualisierung: 2021-07-08 09:47:43

Background Platinum compounds such as cisplatin or carboplatin are potent antineoplastic agents widely used for a variety of cancer types. Unfortunately, their use leads to dose-limiting side effects such as ototoxicity. Our study aimed at investigating the predictive value of 11 candidate genetic[for full text, please go to the a.m. URL], 36. Wissenschaftliche Jahrestagung der Deutschen Gesellschaft für Phoniatrie und Pädaudiologie (DGPP)

Objective: The intensive and long‐lasting experience of childhood cancer is a tremendous stressor for the parental relationship. We aimed to (1) compare civil status and partner relationship of parents of long‐term childhood cancer survivors with population‐based comparisons, (2) identify cancer‐related characteristics associated with not being married, and (3) evaluate the quality of the partner relationship. Methods: We sent questionnaires to parents of survivors aged ≤16 years at diagnosis and ≥20 years at study. Population‐based comparisons were derived from a random sample of the general population (≥1 child aged ≥20 years) and standardized by sociodemographic characteristics of survivor parents. We used logistic regression to identify cancer‐related characteristics associated with not being married. The quality of the partner relationship was evaluated using the relationship‐specific attachment scale for adults assessing the dimensions security (secure‐fearful) and dependency (dependent‐independent). Results: A total of 784 parents (58.9% mothers) of 512 survivors (response rate: 44.0%) and 471 comparison parents completed the questionnaire. Parents of survivors were less often divorced/separated (9.0% vs 17.5%, P < 0.001) and more often in a partner relationship (89.9% vs 85.0%, P = 0.010) than comparisons. Not being married was not associated with cancer‐related characteristics. Parents of survivors reported similar security (P = 0.444) but higher dependency (P = 0.032) within the partner relationship than comparisons. In both populations, fathers indicated higher security and dependency than mothers. Conclusions: Long after the diagnosis of cancer in their child, parents' relationship appears similar as in parents of the general population. The increased dependency reported by parents of survivors suggests that they managed their child's disease as a team., + ID der Publikation: unilu_35894 + Sprache: Englisch + Publisher's Statement: This is the peer reviewed version of the following article: Relationship status and quality of the partner relationship in parents of long-term childhood cancer survivors: the Swiss Childhood Cancer Survivor Study - Parents, which has been published in final form at https://onlinelibrary.wiley.com/doi/10.1002/pon.4941. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.+ Letzte Aktualisierung: 2020-01-21 13:57:48

BACKGROUND Second malignant neoplasms and cardiotoxicity are among the most serious and frequent adverse health outcomes experienced by childhood and adolescent cancer survivors (CCSs) and contribute significantly to their increased risk of premature mortality. Owing to differences in health-care systems, language and culture across the continent, Europe has had limited success in establishing multi-country collaborations needed to assemble the numbers of survivors required to clarify the health issues arising after successful cancer treatment. PanCareSurFup (PCSF) is the first pan-European project to evaluate some of the serious long-term health risks faced by survivors. This article sets out the overall rationale, methods and preliminary results of PCSF. METHODS The PCSF consortium pooled data from 13 cancer registries and hospitals in 12 European countries to evaluate subsequent primary malignancies, cardiac disease and late mortality in survivors diagnosed between ages 0 and 20 years. In addition, PCSF integrated radiation dosimetry to sites of second malignancies and to the heart, developed evidence-based guidelines for long-term care and for transition services, and disseminated results to survivors and the public. RESULTS We identified 115,596 individuals diagnosed with cancer, of whom 83,333 were 5-year survivors and diagnosed from 1940 to 2011. This single data set forms the basis for cohort analyses of subsequent malignancies, cardiac disease and late mortality and case-control studies of subsequent malignancies and cardiac disease in 5-year survivors. CONCLUSIONS PCSF delivered specific estimates of risk and comprehensive guidelines to help survivors and care-givers. The expected benefit is to provide every European CCS with improved access to care and better long-term health.