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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. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. We developed the key components of the PanCareFollowUp Care Intervention : a PanCareFollowUp Survivor Questionnaire , Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being. • Long-term follow-up care is essential for the health of childhood cancer survivors. • PanCareFollowUp Care Intervention is suitable for all health care systems. • Treatment summary, Survivorship Care Plan, recommendations and health information. • Evaluation of feasibility and effectiveness of Care Intervention in four European countries. • Replication manual for implementation at institutions will be available postproject. [ABSTRACT FROM AUTHOR]

Purpose: Given childhood cancer survivors' risk of treatment-induced late effects, long-term follow-up care is recommended. We explored experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood malignant lymphoma in Norway.Methods: We conducted five focus group interviews with 34 survivors (19 females; 21 Hodgkin/13 non-Hodgkin lymphoma survivors; mean age 39 years; mean time from diagnosis 26 years). Data was analyzed using principles of thematic analysis.Results: Two main themes were identified: (1) the survivors' experiences with late effects-related care and (2) their preferences for long-term follow-up care. Most of the survivors were dissatisfied with their late effects-related care due to perceptions of poor coordination of healthcare needs in a fragmented system, combined with a perceived lack of knowledge of late effects among themselves and general practitioners (GPs). All survivors valued long-term follow-up care. Oncologists were the preferred care providers, but GPs were considered acceptable providers if they had sufficient knowledge of late effects and routine examinations, short waiting times, and improved GP-oncologist collaboration.Conclusions: Our results suggest that a shared care model of long-term follow-up care involving specialists, GPs, and the survivors themselves is likely to fulfill several of the currently unmet needs among adult survivors of childhood cancers. Improved patient education about late effects and follow-up care would aid self-management. The survivors' concerns regarding lack of sufficient knowledge of late effects among GPs suggest a need for improving access to, and dissemination of, information of late effects. [ABSTRACT FROM AUTHOR]

Aims This study describes alcohol consumption among adult survivors of pediatric cancer compared to sibling controls and a national sample of healthy peers. Risk factors for heavy drinking among survivors are described. Design, setting and participants Cross-sectional data were utilized from the Childhood Cancer Survivor Study including adult survivors of pediatric cancer ( n = 10 398) and a sibling cohort ( n = 3034). Comparison data were drawn from the National Alcohol Survey ( n = 4774). Measurement Alcohol consumption, demographic, cancer diagnosis, treatment and psychosocial factors were measured. Findings Compared to peers, survivors were slightly less likely to be risky [adjusted odds ratio (ORadj) = 0.9; confidence interval (CI) 0.8–1.0] and heavy drinkers (ORadj = 0.8; CI 0.7–0.9) and more likely to be current drinkers. Compared to siblings, survivors were less likely to be current, risky and heavy drinkers. Risk factors for survivors' heavy drinking included being age 18–21 years (ORadj = 2.0; 95% CI 1.5–2.6), male (ORadj = 2.1; 95% CI 1.8–2.6), having high school education or less (ORadj = 3.4; 95% CI 2.7–4.4) and drinking initiation before age 14 (ORadj = 6.9; 95% CI 4.4–10.8). Among survivors, symptoms of depression, anxiety or somatization, fair or poor self-assessed health, activity limitations and anxiety about cancer were associated with heavy drinking. Cognitively compromising treatment, brain tumors and older age at diagnosis were protective. Conclusions Adult survivors of childhood cancer show only a modest reduction in alcohol consumption compared to peers despite their more vulnerable health status. Distress and poorer health are associated with survivor heavy drinking. Screening for alcohol consumption should be instituted in long-term follow-up care and interventions among survivors and siblings should be established to reduce risk for early drinking. [ABSTRACT FROM AUTHOR]