Original ResearchTransition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork
Section snippets
The need for transition of care for childhood cancer survivors
In recent years, transition from child-centred to adult-oriented healthcare for childhood cancer survivors has become an increasingly important issue. Childhood cancer survivors are a growing population of individuals who are at high risk for premature morbidity and mortality due to their previous treatment and the cancer itself [1], [2], [3], [4]. In an effort to reduce morbidity and mortality, several national and international initiatives have started to target childhood cancer survivors for
The need for a specific transition of care guideline for childhood cancer survivors
Transition, independent of health status and age, takes place in our everyday lives, for example starting school, puberty, developing relationships, seeking employment. A major transition period is adolescence. It is a distinct phase of development characterised by a time of physical, sexual, psychological, emotional, cognitive and social changes and the establishment of self-identity. Decisions about lifestyle and vocation become important, and for many adolescents, relationships start to
The need for an appropriate definition of transition of care for childhood cancer survivors
The important first step in the development of transition of care guidelines is to define the concept of transition for childhood cancer survivors. Therefore, an international multidisciplinary working group was convened, representing all relevant disciplines, including paediatric oncologists, survivorship care providers, psychologists, guideline methodologists and epidemiologists. Systematic literature searches in MEDLINE (PubMed) covering the time period from 1990 were performed in November
Conclusions
Childhood cancer survivors have an increased risk of chronic health problems. Given their rapidly expanding population, it is important that efforts should focus on the transition of childhood cancer survivors from paediatric to adult LTFU care. To improve the quality of care and thereby the quality of life of this vulnerable patient population, PCSF is developing pan-European guidelines for the transition of childhood cancer survivors. Based on a systematic literature review we defined the
Conflict of interest statement
None declared.
Acknowledgements
The authors thank Micol Gianinazzi for identifying studies for this manuscript. This study is supported by the 7th Framework Programme of the EU, PanCareSurFup (257505).
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European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer
2021, European Journal of CancerThe European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers
2021, European Journal of CancerCitation Excerpt :It may support survivors as they transition from treatment to follow-up, from childhood to adolescence and from paediatric to adult healthcare settings. Thus, they may be able to navigate the complexity of various specialists being involved in adult healthcare and take responsibility for their own health [17]. Implementation of survivorship care, however, has proven challenging across the globe [18].
Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE)
2021, ESMO OpenCitation Excerpt :Late effect/survivorship clinics and primary health care engagement.68-70 Transition programmes (from childhood to AYA or adult services).71 Genetic counselling and access to genetic testing for hereditary cancer syndromes.
ESGO–SIOPE guidelines for the management of adolescents and young adults with non-epithelial ovarian cancers
2020, The Lancet OncologyCitation Excerpt :The presence of these germline genetic alterations makes these patients, as well as family members with germline mutations, at considerable risk of developing other disorders, which are part of the particular predisposition syndrome. Long-term follow-up well beyond the end of the AYA age is crucial.34,35 Studies to identify the best psychosocial and long-term follow-up care, including prevention and screening for early detection of late side-effects, should be included in clinical research programmes in AYA patients.36
Current and coming challenges in the management of the survivorship population
2020, Seminars in OncologyCitation Excerpt :In countries with national healthcare systems, guidelines may also be disseminated through governmental healthcare delivery systems. Additionally, some of the groups have developed materials specifically designed for the lay audience of survivors and their families [66-68]. The COG, in collaboration with Baylor College of Medicine, has also implemented an electronic, web-based tool that generates personalized survivorship guidelines based on the COG Long-Term Follow-Up Guidelines [69].
The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer
2018, European Journal of CancerCitation Excerpt :In collaboration with IGHG, five guidelines have been published so far, concerning surveillance for breast cancer, cardiomyopathy, premature ovarian insufficiency, male gonadotoxicity and thyroid cancer [24–28,5]. In addition to new guidelines for second CNS tumours, pituitary dysfunction, metabolic syndrome, cardiac vasculopathy and others, PCSF is working on guidelines for care delivery, the first of which concerns transition from paediatric to adult care [29]. A handbook from the guidelines group outlines the methodology involved in production of guidelines for surveillance of late effects [31].