Optimizing survivorship care

Abstract

Each year, 400,000 children and adolescents up to the age of 19 are diagnosed with cancer worldwide. In high-income countries, more than 80% of these patients survive, thanks to advancements in treatment. However, many survivors face long-term health problems. These problems can include, for example, heart disease, fertility problems, and the development of secondary cancers. Within 30 years of their initial diagnosis, 75% of survivors will experience at least one chronic condition, with 25% of these being severe or life-threatening. This underscores the critical importance of high-quality follow-up care for childhood cancer survivors. Unfortunately, such care is often inadequate globally, hindered by gaps in knowledge, awareness, and a lack of standardized long-term care protocols. This thesis offers four solutions to optimize survivorship care: 1. More knowledge: Our research shows that survivors have three times more health problems than their siblings without cancer. Hormone problems are especially common. This indicates that long-term, specialised care is needed. 2. New guidelines: We have developed European guidelines to better monitor survivors for health problems after their treatment up to 5 years after cancer diagnosis. 3. SurPass: This digital care plan provides personalized care and is designed to improve long-term survivorship care in Europe. The research in this thesis showed how implementation could be improved, for example through access to medical records and more time for preparation. 4. Healthy behaviors: Finally, a systematic review in preparation for a health promotion guideline shows that many survivors struggle with adopting and maintaining healthy behaviours, such as sufficient physical activity and a healthy diet. Barriers such as fatigue and time constraints require targeted support and guidance. The findings of this thesis are helping to optimize the long-term care of survivors. This thesis provides more knowledge, better guidelines and digital tools. All this contributes to a better quality of life for survivors, in the Netherlands and abroad.