The views of European clinicians on guidelines for long‐term follow‐up of childhood cancer survivors

Abstract

Background Evidence‐based guidelines are needed to guide effective long‐term follow‐up (LTFU) of childhood cancer survivors (CCS) at risk of late adverse effects (LAEs). We aimed to ascertain the use of LTFU guidelines throughout Europe, and seek views on the need for pan‐European LTFU guidelines. Procedures One expert clinician from each of 44 European countries was invited to participate in an online survey. Information was sought regarding the use and content of LTFU guidelines in the respondent's centre and country, and their views about developing pan‐European LTFU guidelines. Results Thirty‐one countries (70%) responded, including 24 of 26 full EU countries (92%). LTFU guidelines were implemented nationally in 17 countries (55%). All guidelines included recommendations about physical LAEs, specific risk groups and frequency of surveillance, and the majority about psychosocial LAEs (70%), and healthy lifestyle promotion (65%). A minority of guidelines described recommendations about transition to age‐appropriate LTFU services (22%), where LTFU should be performed (22%) and by whom (30%). Most respondents (94%) agreed on the need for pan‐European LTFU guidelines, specifically including recommendations about surveillance for specific physical LAEs (97%), action to be taken if a specific LAE is detected (90%), minimum requirements for LTFU (93%), transition and health promotion (both 87%). Conclusions Guidelines are not universally used throughout Europe. However, there is strong support for developing pan‐European LTFU guidelines for CCS. PanCareSurFup (http://www.pancare.eu) will collaborate with partners to develop such guidelines, including recommendations for hitherto relatively neglected topics, such as minimum LTFU requirements, transition and health promotion. Pediatr Blood Cancer 2015;62:322–328. © 2014 Wiley Periodicals, Inc.

Lifestyle advice provision to teenage and young adult cancer patients: the perspective of health professionals in the UK

“…Such resources have the potential to support professionals to successfully integrate health behaviour promotion into usual care routines. As previously highlighted, the inclusion of specific information about lifestyle and health behaviour within long-term follow-up guidelines for TYA cancer survivors would be a positive first step [35].…”

The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer

“…Guidelines in use include recommendations regarding physical LAEs (late adverse effects) for which surveillance should be performed (n=22, 96%), the specific groups of survivors at risk of the specified LAEs, and also the frequency at which surveillance of these LEAs should be carried out (both n=23, 100%). The survey highlighted the absence of recommendations in existing guidelines for many aspects of LTFU and revealed widespread recognition of the need for pan-European LTFU guidelines that include aspects of service delivery as well as the actual content of LTFU care [21].…”

Screening and management of adverse endocrine outcomes in adult survivors of childhood and adolescent cancer

“…14 Many other groups developed recom mendations for childhood cancer survivors mainly based on the recommendations of the COG and UKCCSG guidelines. 105 The present guidelines have been produced within different groups and different methods, leading to duplication in investigations and a high variation in the recommendations for the same health problems in survivors of childhood cancer. 13 …”

“…121,122 As noted, many country-specific guidelines for the long-term follow-up of childhood cancer have been developed; 13,15–17,104 a continuing international harmonisation effort will unify and clarify these recommendations. 18,105,123 Therefore, continued enhancements to survivorship care via the survivorship care plan, the Survivorship Passport work of the European Network for Cancer Research in Children and Adolescents, 120 and the harmonised guidelines 18,105,123 should result in improvements in care for survivors of childhood cancer. Nonetheless, cancer therapy, long-term follow-up recommendations, and individual provider and patient needs might be substantially heterogeneous.…”