Monica Muraca

Background: Person‐centred follow‐up care based on evidence‐based clinical practice guidelines and providing individualised information should help to inform and reassure survivors about their medical and psychosocial situation and provide treatment and support where needed. Aims: To describe changes in mental health and resilience in survivors before and after a person‐centred follow‐up care intervention and analyse associations of mental health improvements with socio‐demographic and clinical characteristics. Methods: We implemented the novel person‐centred PanCareFollowUp Care Intervention in four clinics across Europe. Survivors aged 16+ years (cancer diagnosed at age < 19 years, 5+ years after diagnosis) completed the Brief Symptom Inventory‐18 (BSI‐18; somatisation, depression, anxiety, overall distress), Post‐traumatic Stress Disorder Checklist and the Connor‐Davidson Resilience Scale before (T1) and 6 months after (T2) the clinic visit. We calculated a change score for resilience and a reliable change index for BSI‐18 scales and post‐traumatic stress symptoms. Results: In total, 798 survivors participated (51.4% males, mean age = 30.3 years [range: 16–60]). Mental health significantly improved, with lower scores for depression (mean change = 0.89, p = 0.001), anxiety (mean change = 0.68, p = 0.025), overall distress (mean change = 0.99, p = 0.004) and post‐traumatic stress symptoms (mean change = 1.09, p = 0.004) at T2 as compared to T1. Around one‐third of survivors reported significant distress (no change: p = 0.659). Socio‐demographic or clinical characteristics were not associated with changes in resilience or overall distress. A reliable reduction of post‐traumatic stress symptoms was more likely in those single ( p = 0.020), unemployed or in education/studying ( p = 0.003) and with poor physical health ( p = 0.004). Conclusion: Mental health improved after the person‐centred PanCareFollowUp Care Intervention. Inclusion in regular follow‐up care may help to decrease survivors’ distress in the long‐term. Trial Registration : Netherlands Trial Register numbers: NL8918, NL‐OMON21449

Background/purpose: As the population of childhood cancer survivors (CCS) continues to grow, personalized long-term follow-up (LTFU) care has become essential for ensuring optimal quality of life. The Survivorship Passport (SurPass) was developed to support efficient delivery of high-quality LTFU care, with the provision of treatment summaries and personalized follow-up recommendations. Updates to SurPass, from version v1.1 to v2.0, were made possible through two complementary European-funded projects: PanCareFollowUp and PanCareSurPass. Methods: Within PanCareFollowUp, SurPass was updated with new variables and algorithms based on International Guideline Harmonization Group/PanCare guidelines (v1.2) and tested in one clinic. During PanCareSurPass, the platform was updated to v2.0, featuring certification as Medical Device (MD) and interoperability with Electronic Health Information Systems, and deployed across clinical sites in six European countries. Results: The current SurPass v2.0 includes 242 variables and 47 algorithms for generation of the Standardized Care Plan. It is certified as MD and supports both manual and semi-automatic data entry through the adoption of Health Level Seven International Fast Healthcare Interoperability Resources (HL7-FHIR). The preliminary experience with SurPass delivered to 207 CCS in Italy within the PanCareFollowUp is reported. Conclusion: Interoperability via HL7-FHIR and the MD certification of the SurPass allow its use in clinical practice, and a reduction in time needed to generate the document providing homogeneous and personalized LTFU care for European CCS. Cost of interoperability through HL7-FHIR is offset by savings due to time reduction for TS generation. Experience in one clinic document the satisfaction of survivors who shared the document with their family doctors. Implications for Cancer Survivors: The Survivorship Passport (SurPass) provides childhood cancer survivors with a standardized, personalized summary of their cancer treatment and individualized follow-up recommendations based on international guidelines. Its implementation across multiple European countries demonstrates the feasibility of delivering consistent survivorship information that can support long-term follow-up, facilitate communication between survivors and healthcare providers, and promote informed engagement in survivorship care.

Purpose: Survivors of childhood, adolescent, and young adult (CAYA) cancer face lifelong risks of treatment-related late effects, emphasizing the need for innovative, person-centred survivorship care. The PanCareFollowUp (PCFU) Care intervention, based on person-centred care (PCC), prioritizes survivors' values and needs. This paper describes the evaluation of experiences of healthcare professionals’ (HCPs) and supporting staff’s experiences with the training package that was developed for implementation of PCC in the PCFU Care. Methods: To support PCC delivery, a training package, including a training presentation with voice-over and a workshop, was developed. Healthcare professionals (HCPs) and supporting staff from four European survivorship clinics evaluated the training package through questionnaires measuring readiness to apply PCC, knowledge, confidence, perceived utility, and tool-related experiences. Results: Eighteen HCPs evaluated the training presentation. Readiness to apply PCC increased from 68% pre-training to 89% post-training, while confidence declined from 78% to 68%. Most participants reported improved knowledge, with 94% indicating at least some increase. Frameworks such as Ekman’s pillars, the seven steps for a PCC consultation, and shared decision-making questions were rated highly useful. Twenty-eight HCPs evaluated the workshop; 82% found it useful and 82% reported an overall favourable impression. Participants valued open discussion, multidisciplinary perspectives, and survivor involvement. The workshop’s short duration and more broadly, limited time, staff shortages, and digital infrastructure were identified as barriers to PCC implementation. Conclusion: This multi-country evaluation shows that even brief PCC training can enhance HCPs’ readiness to deliver person-centred survivorship care. The findings highlight both the potential of concise educational interventions and the importance of delivery format and organizational context for the sustainable implementation of PCC across survivorship care settings.

Immune dysregulation in Inborn Errors of Immunity (IEI) shows a broad phenotype, including autoimmune disorders, benign lymphoproliferation, and malignancies, driven by an increasing number of implicated genes. Recent findings suggest that childhood cancer survivors (CCSs) may exhibit immunological abnormalities potentially linked to an underlying IEI, along with a well-known increased risk of subsequent malignancies due to prior cancer treatments. We describe a patient with two composite heterozygous pathogenic variants in the interleukin-2-inducible T-cell kinase (ITK) gene and a history of multiple tumors, including recurrent Epstein–Barr virus (EBV)-related nodular sclerosis and Hodgkin’s lymphoma (NSHL), associated with unresponsive multiple hand warts, immune thrombocytopenia, and an impaired immunological profile (CD4+ lymphocytopenia, memory B-cell deficiency, reduction in regulatory T-cells, and B-cell- and T-cell-activated profiles). In our case, ITK-related immune dysregulation and prior exposure to oncological treatments seem to have simultaneously intervened in the same individual, leading to the development of a unique clinical profile. It is essential to raise awareness of the two-way association between immune dysregulation disorders and multiple tumors.

Nerve sheath myxoma (NSM) is a rare benign peripheral nerve sheath tumor that affects young adults. NSMs are asymptomatic, slow-growing swellings located in the upper extremities, more rarely in the lower extremities. Given the high risk of recurrence, it is recommended to perform a complete exeresis. To our knowledge, the evolution and management of NMS during pregnancy have not been described yet. We report the first case of recurrent pretibial NSM in a pregnant girl and its follow-up and outcome during and after pregnancy. NSM is difficult to diagnose clinically or using imaging. The final diagnosis remains histopathological. It is known how various types of benign and malignant skin tumors can develop or change during pregnancy. With our case, however, we documented that pregnancy does not affect the growth and evolution of NSM. Given the benign nature of the lesions and their tendency to grow slowly, during pregnancy, follow-up of NSMs can be conducted through ultrasonography and surgical treatment postponed after delivery. Our case highlights the importance of careful monitoring and individualized decision making, especially in rare scenarios such as NSM, where data on the progression of benign lesions are limited. Our case highlights the importance of a careful monitoring and a tailored treatment in rare scenarios such as NSM, where data on the progression of benign lesions are limited. Considering the benign nature of the lesions and their tendency to grow slowly, follow-up of NSMs during pregnancy can be conducted through ultrasonography, and surgical treatment can be postponed after delivery.

Background: To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany. Objective: We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity. Methods: IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs. Results: In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios. Conclusions: This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs.