Healthcare providers' expected barriers and facilitators to the implementation of person-centered long-term follow-up care for childhood cancer survivors: A PanCareFollowUp study.

Background: Childhood cancer survivors face high risks of adverse late health effects. Long-term follow-up care for childhood cancer survivors is crucial to improve their health and quality of life. However, implementation remains a challenge.

Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: A systematic review.

Background: Healthy behaviors are paramount in preventing long-term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population.

Methods: MEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16-50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis.

Asking those who know their needs best: A framework for active engagement and involvement of childhood cancer survivors and parents in the process of psychosocial research-A workshop report.

Background: Patient and public involvement and engagement (PPIE) in healthcare research is crucial for effectively addressing patients' needs and setting appropriate research priorities. However, there is a lack of awareness and adequate methods for practicing PPIE, especially for vulnerable groups like childhood cancer survivors.

Aims: This project aimed to develop and evaluate engagement methods to actively involve pediatric oncological patients, survivors, and their caregivers in developing relevant research questions and practical study designs.

Scaling up and implementing the digital Survivorship Passport tool in routine clinical care - The European multidisciplinary PanCareSurPass project.

Background: 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 organization of care in pediatric radiotherapy across SIOP Europe affiliated centers: A multicenter survey in the framework of the 'Joint Action on Rare Cancers' project.

Background/purpose: To reduce inequalities among SIOPE-affiliated countries, standard and optional levels to deliver 'Good Clinical Practice' compliant treatment in pediatric radiation oncology have been published. The aim of this project was to map the availability of pediatric radiotherapy resources across SIOPE-affiliated radiotherapy departments.

Materials/methods: An online survey with 34 questions was distributed to 246 radiotherapy departments across 35 SIOPE-affiliated countries.

European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5 years after diagnosis: a PanCare guideline.

Purpose: Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of cancer treatment throughout their lives. There is a lack of evidence-based guidelines on optimal surveillance strategies for the period from the end of treatment to 5 years after diagnosis. We aimed to address this gap by developing recommendations for short-term surveillance of health problems based on existing long-term follow-up (LTFU) care guidelines.

Have we made progress in taking care of adolescents and young adults with cancer? Results of a European multi-professional survey.

Background: It is well documented that traditional health care models do not meet the specific needs of Adolescents and Young Adults (AYA) cancer patients.

Methods: We explore a map of the development of age-specific AYA cancer care across Europe, from the perspective of healthcare professionals with an interest in AYA care, in order to understand the specific challenges and map progress over time. An on-line survey was developed by international professional cancer organisations.

The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer.

Background: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society.

A Psychosocial Support Program for Young Adult Childhood Cancer Survivors in Austria: a Qualitative Evaluation Study.

Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system, and many worry about their ability to cope with long-term sequelae, and some are even lost to follow-up. Therefore, in the present study, a targeted aftercare program was developed and evaluated with the goal of facilitating three important "life skills": (1) self-perception, (2) social interaction and conflict management, and (3) self-conscious communication of support needs.

The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers.

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.

Surviving Survival-Challenge Accepted!: Perspectives on Survivorship in Pediatric Oncology.

Surviving childhood cancer can be a lifelong challenge: up to 75% of childhood cancer survivors must deal with late effects of their cancer and treatments. Next to keeping the balance between dealing with late-effects and adapting to a life "after cancer" many childhood cancer survivors also face the reality of inadequate or nonexisting follow-up care. Because cure is not enough, patient advocates depict why it is important to #RaiseYourHands4Survivors!

TIS - Talking in Symbols. Development of a Tool for Nonverbal Communication after Language Barriers in Pediatric Oncology.

Language barriers have been reported to have a detrimental effect on various outcomes in paediatric care, such as therapy adherence, and may even cause medical treatment errors. To address this issue, we developed a set of 63 cards with which a wide range of specific messages can be conveyed nonverbally in a clinical context. The conceptualization of the tool involved multiple phases.

Recommendations for the organisation of care in paediatric radiation oncology across Europe: a SIOPE-ESTRO-PROS-CCI-Europe collaborative project in the framework of the JARC.

Disparities in survival and long-term side-effects from paediatric cancer are observed across European Society for Paediatric Oncology (SIOPE)-affiliated countries. The Joint Action on Rare Cancers (JARC) is a project supported by the European Union and member states aiming to formulate recommendations on rare cancers, including paediatric malignancies, to reduce inequalities and to improve health outcomes. Most paediatric cancers are treated by a combination of systemic agents, surgery and/or radiotherapy.

The 'Survivorship Passport' for childhood cancer survivors.

Background: Currently, there are between 300,000 and 500,000 childhood cancer survivors (CCSs) in Europe. A significant proportion is at high risk, and at least 60% of them develop adverse health-related outcomes that can appear several years after treatment completion. Many survivors are unaware of their personal risk, and there seems to be a general lack of information among healthcare providers about pathophysiology and natural history of treatment-related complications.

The European Cancer Patient's Bill of Rights, update and implementation 2016.

In this implementation phase of the European Cancer Patient's Bill of Rights (BoR), we confirm the following three patient-centred principles that underpin this initiative:The right of every European citizen to receive the most accurate information and to be proactively involved in his/her care.The right of every European citizen to optimal and timely access to a diagnosis and to appropriate specialised care, underpinned by research and innovation.The right of every European citizen to receive care in health systems that ensure the best possible cancer prevention, the earliest possible diagnosis of their cancer, improved outcomes, patient rehabilitation, best quality of life and affordable health care.

Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda.

In Europe, 6,000 young people die of cancer yearly, the commonest disease causing death beyond the age of 1 year. In addition, 300,000-500,000 European citizens are survivors of a childhood cancer and up to 30% of them have severe long-term sequelae of their treatment. Increasing both cure and quality of cure are the two goals of the European paediatric haematology/oncology community.

Towards reducing inequalities: European Standards of Care for Children with Cancer.

Despite the increase of cure rates in the treatment of children with cancer there is a significant discrepancy in the outcome within Europe. Data are showing us that there is a difference of 20% in outcomes for young people with cancer when comparing North and Western Europe with Central and Eastern Europe. One of the most important necessities, in order to be able to have comparable results and equitable outcomes about inequalities, is to have the Principle Treatment Centres, meeting a minimum level of standards and being accessible to continuously updated 'best practice'.