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2.
J Cancer Surviv ; 2023 Nov 28.
Article En | MEDLINE | ID: mdl-38015382

PURPOSE: To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe. METHODS: Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated. RESULTS: The study identified 115 barriers and 159 facilitators. The main barriers included the lack of standardised LTFU care in centres and network cooperation, uncertainty about SurPass accessibility, and uncertainty about how to integrate SurPass into electronic health information systems. The main facilitators included standardised and coordinated LTFU care in centres, allowing CCSs to conceal sensitive information in SurPass and (semi)automatic data transfer and filing. CONCLUSIONS: Key barriers to SurPass implementation were identified in the areas of care, ethical considerations, and information & IT. To address these barriers and facilitate the implementation on SurPass, we have formulated 27 recommendations. Key recommendations include using the internationally developed protocols and guidelines to implement LTFU care, making clear decisions about which parties have access to SurPass data in accordance with CCSs, and facilitating (semi)automated data transfer and filing using Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR). IMPLICATIONS FOR CANCER SURVIVORS: The findings of this study can help to implement SurPass and to ensure that cancer survivors receive high-quality LTFU care with access to the necessary information to manage their health effectively.

3.
Cancer Med ; 12(11): 12749-12764, 2023 06.
Article En | MEDLINE | ID: mdl-37029537

BACKGROUND: Healthy behaviors, that is, engaging in regular physical activities, maintaining a healthy diet, limiting alcohol consumption, and avoiding tobacco and drug use, decrease the risk of developing late adverse health conditions in childhood cancer survivors. However, childhood cancer survivors may experience barriers to adopting and maintaining healthy behaviors. This study aimed to assess these barriers and facilitators to health behavior adoption and maintenance in childhood cancer survivors. METHODS: A focus group ( n = 12) and semi-structured telephone interviews ( n = 20) were conducted with a selected sample of European and Dutch childhood cancer survivors, respectively. The Theoretical Domains Framework (TDF) was used to inform the topic guide and analysis. Inductive thematic analysis was applied to identify categories relating to barriers and facilitators of health behavior adoption and maintenance, after which they were deductively mapped onto the TDF. RESULTS: Ten TDF domains were identified in the data of which "Knowledge," "Beliefs about consequences," "Environmental context and resources," and "Social influences" were most commonly reported. Childhood cancer survivors expressed a need for knowledge on the importance of healthy behaviors, possibly provided by healthcare professionals. They indicated physical and long-term benefits of healthy behaviors, available professional support, and a supporting and health-consciously minded work and social environment to be facilitators. Barriers were mostly related to a lack of available time and an unhealthy environment. Lastly, (social) media was perceived as both a barrier and a facilitator to healthy behaviors. CONCLUSION: This study has identified education and available professional support in health behaviors and the relevance of healthy behaviors for childhood cancer survivors as key opportunities for stimulating health behavior adoption in childhood cancer survivors. Incorporating health behavior support and interventions for this population should therefore be a high priority.


Cancer Survivors , Neoplasms , Humans , Child , Neoplasms/epidemiology , Neoplasms/therapy , Health Behavior , Qualitative Research , Focus Groups
4.
Cancer Med ; 12(6): 7414-7426, 2023 03.
Article En | MEDLINE | ID: mdl-36397667

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.


Health Behavior , Health Personnel , Humans , Child , Health Personnel/education , Qualitative Research , Focus Groups , Delivery of Health Care
5.
Pediatr Blood Cancer ; 44(5): 478-86, 2005 May.
Article En | MEDLINE | ID: mdl-15918215

BACKGROUND: Omitting radiotherapy for central nervous system (CNS) prophylaxis has improved the overall quality of life for long-term survivors of childhood acute lymphoblastic leukemia (ALL). However, recent reports suggest minor cognitive impairment in survivors who received chemotherapy only. PROCEDURE: This study focused on attentional functioning and speed of information processing in 23 children previously treated for ALL according to EORTC 58881 and EORTC 58951 protocol. Patients received intrathecal methotrexate combined with high doses intravenous methotrexate as CNS prophylaxis. Cognitive functioning was assessed with the Amsterdam Neuropsychological Tasks, a computerized attention assessment program. Variables of both speed and accuracy of the patients were compared with those obtained from 23 age- and sex-matched control children. RESULTS: Patients were equal to control children concerning baseline speed, sustained attention, response inhibition, and response organization. However, they were significantly slower than controls in three tasks: encoding, memory search letters, and focused attention 4-letters. Interactions with the difficulty of the task were found. There were no differences in number or type of errors between groups on all tasks. CONCLUSIONS: ALL survivors treated with chemotherapy have specific information processing difficulties. They process information slower than control children, especially when more information has to be processed or when attention has to be focused precisely. In spite of being slower, patients are equally accurate compared to control children.


Antineoplastic Agents/therapeutic use , Attention , Central Nervous System Neoplasms/prevention & control , Mental Processes , Precursor Cell Lymphoblastic Leukemia-Lymphoma/drug therapy , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Survivors , Child , Cognition Disorders/etiology , Cognition Disorders/prevention & control , Contraindications , Female , Humans , Injections, Spinal , Male , Methotrexate/administration & dosage , Precursor Cell Lymphoblastic Leukemia-Lymphoma/complications , Psychological Tests , Radiotherapy
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