Improving quality of survival after childhood cancer by developing, implementing and evaluating care

Abstract

Survival after childhood cancer has improved significantly over the past decades. Unfortunately, many survivors of childhood cancer experience late effects due to their disease or treatment. It is important to prevent late effects, where possible, or to detect and treat them as early as possible. The PhD thesis “Improving quality of survival after childhood cancer by developing, implementing and evaluating care” consists of three parts, aiming to improve the quality of care and survival in pediatric oncology. Part one describes the PanCareFollowUp project, a European collaboration led by the Princess Máxima Center for pediatric oncology. The PanCareFollowUp Care Intervention is a person-centered model for long-term care that can be flexibly implemented in different care settings. The PanCareFollowUp Recommendations describe which survivors are at risk of which late effects and present appropriate surveillance strategies. The PanCareFollowUp Care Study describes the outcomes of implementing the PanCareFollowUp Care Intervention in four European countries. Part two focuses on the potential pulmonary toxic effects of cyclophosphamide. In a national LATER study including more than 800 survivors we concluded that cyclophosphamide does not cause clinically relevant pulmonary dysfunction. Part three highlights the importance of evaluation of care. In collaboration with 400 international experts and survivors, we developed the International Childhood Cancer Core Outcome Set. Using 24 physical, psychosocial and neurocognitive outcomes, the Princess Máxima Center and other hospitals can measure their progress in improving quality of survival and benchmark their outcomes with each other.