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Purpose: Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long‐term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long‐term follow‐up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. Methods: Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14–18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. Results: Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. Conclusions: Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer‐related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development‐specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks. [ABSTRACT FROM AUTHOR]

Purpose: With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS' needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors' wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors' unmet needs. Method: In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. Results: Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS' ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment. Conclusion: In our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors' needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support. [ABSTRACT FROM AUTHOR]

Childhood cancer survivors (CCS), of whom there are about 500,000 living in Europe, are at an increased risk of developing health problems [1–6] and require lifelong Survivorship Care. There are information and knowledge gaps among CCS and healthcare providers (HCPs) about requirements for Survivorship Care [7–9] that can be addressed by the Survivorship Passport (SurPass), a digital tool providing CCS and HCPs with a comprehensive summary of past treatment and tailored recommendations for Survivorship Care. The potential of the SurPass to improve person-centred Survivorship Care has been demonstrated previously [10,11]. The EU-funded PanCareSurPass project will develop an updated version (v2.0) of the SurPass allowing for semi-automated data entry and implement it in six European countries (Austria, Belgium, Germany, Italy, Lithuania and Spain), representative of three infrastructure healthcare scenarios typically found in Europe. The implementation study will investigate the impact on person-centred care, as well as costs and processes of scaling up the SurPass. Interoperability between electronic health record systems and SurPass v2.0 will be addressed using the Health Level Seven (HL7) International interoperability standards. PanCareSurPass will deliver an interoperable digital SurPass with comprehensive evidence on person-centred outcomes, technical feasibility and health economics impacts. An Implementation Toolkit will be developed and freely shared to promote and support the future implementation of SurPass across Europe. PanCareSurPass is a novel European collaboration that will improve person-centred Survivorship Care for CCS across Europe through a robust assessment of the implementation of SurPass v2.0 in different healthcare settings. • SurPass addressing knowledge gaps regarding Survivorship Care requirements. • SurPass v2.0 will improve person-centred Survivorship Care for CCS across Europe. • SurPass v2.0 as an interoperable digital tool. • Generating evidence on person-centred outcomes, feasibility and health economics. • Promoting uptake of the SurPass via freely available Implementation Toolkit. [ABSTRACT FROM AUTHOR]

Purpose: The successful transition of childhood cancer survivors from pediatric- to adult-focused long-term follow-up care is crucial and can be a critical period. Knowledge of current transition practices, especially regarding barriers and facilitators perceived by survivors and health care professionals, is important to develop sustainable transition processes and implement them into daily clinical practice. We performed a systematic review with the aim of assessing transition practices, readiness tools, and barriers and facilitators. Methods: We searched three databases (PubMed, Embase/Ovid, CINAHL) and included studies published between January 2000 and January 2020. We performed this review according to the PRISMA guidelines and registered the study protocol on PROSPERO; two reviewers independently extracted the content of the included studies. Results: We included 26 studies: six studies described current transition practices, six assessed transition readiness tools, and 15 assessed barriers and facilitators to transition. Conclusion: The current literature describing transition practices is limited and overlooks adherence to follow-up care as a surrogate marker of transition success. However, the literature provides deep insight into barriers and facilitators to transition and theoretical considerations for the assessment of transition readiness. We showed that knowledge and education are key facilitators to transition that should be integrated into transition practices tailored to the individual needs of each survivor and the possibilities and limitations of each country's health care system. Implications for Cancer Survivors: The current knowledge on barriers and facilitators on transition should be implemented in clinical practice to support sustainable transition processes. [ABSTRACT FROM AUTHOR]

Summary: Purpose: Good news: Survival rates in childhood cancer have increased from 20% up to over 80% in Europe, depending on cancer type and country. Not so good news: This great success comes with the price that up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care. Bad news: transition from paediatric health care to adult health care still poses a great problem for childhood cancer survivors due to the lack of adequate long-term care structures for adult survivors of childhood cancer. Patients and methods: Ongoing initiatives and projects driven forward jointly by survivors, parents and health care professionals tackle this gap: Childhood Cancer International Europe (CCI-E) and its Survivors Network (CCI-ESN), the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) and the European Society for Paediatric Oncology (SIOP Europe) are working on and advocating for better long-term follow-up care structures across Europe. Results: Three ongoing best practice projects are presented—each reflecting one important element in the delivery and provision of comprehensive long-term follow-up care: The PanCareFollowUp Project, the Survivorship-Passport and the ZONE-project. Conclusion: The Childhood Cancer International Europe Survivors Network call for action: We need the support of politicians and our health care systems to make sure that every single survivor gets the long-term care that they need. So #RaiseYourHands4Survivors and help us close the gap! [ABSTRACT FROM AUTHOR]

Evidence-based clinical practice guidelines are essential to ensure that childhood cancer survivors at risk of chronic health conditions receive effective long-term follow-up care. However, adult survivors of childhood cancer are not always engaged in recommended health promotion and follow-up practices, as many centres do not have a formal transition programme that prepares survivors and their families for successful transfer from child-centred to adult-oriented healthcare. The need for a specific pan-European guideline for the transition of care for childhood cancer survivors has been recognised. The first step is to define the concept of transition of care for survivors of childhood cancer based on existing evidence. [ABSTRACT FROM AUTHOR]