‘Unfortunately, the improvement in survival rates for children with cancer in recent decades has a downside. Children and adults treated for childhood cancer have a high risk of health problems. Health problems that occur about 20-30 years earlier than in the general population,' says Leontien Kremer. ‘In one of our earlier studies in Amsterdam, we showed that 75% of people who survive childhood cancer have some kind of late effect. So far, we have not seen a decrease in the incidence of late effects over time. So attention to health problems later in life, the so-called late effects, is urgently needed now and in the future. We have to get it right now, LATER is too late.’
The main physical health problems are the development of secondary tumors, organ dysfunction, including fertility problems. Kremer: ‘It's estimated that one in ten survivors treated with a certain type of chemotherapy and also radiation will develop heart failure at an average age of 50. That is a very high number of survivors. Another example is the development of stroke: Nearly one in ten survivors treated with radiation to the chest, neck or head develops a stroke within 40 years of cancer diagnosis. Proper treatment of other risk factors, such as high blood pressure or high cholesterol, is very important in this group. In addition to physical health problems, severe fatigue is common among childhood cancer survivors. Survivors may also experience psychosocial and neurocognitive problems. In summary, the magnitude of late effects is great, and that's not good news.
Individualized care plan
Leontien Kremer: ‘Together with global experts in late effects of childhood cancer and the Cochrane Childhood Cancer Group, we have developed methods for a new international guideline development. We are synthesizing the evidence; who is at risk for what late effect? How can we best detect them? And what treatment can we start early? Finally, we make recommendations about who should receive what tests and care. I am very pleased that we received a grant from ZonMW to develop an individualized care plan. In it, data managers and caregivers summarize the pediatric cancer treatment that survivors have received, and we describe the LATER care needed for that specific survivor: a personalized care plan, five years after diagnosis. A plan that summarizes the cancer treatment with recommendations based on their personalized risk for late effects and the LATER guideline. We are now working on an automated system where treatments are linked to the guideline, resulting in a digital personalized care plan. This is the basis for each survivor's own direction, but the plan can also provide clarity for other health care providers, such as the primary care physician.’
Future Knowledge Center
In her inaugural lecture, Leontien Kremer expressed her ambition to establish a Knowledge Center for long-term care after childhood cancer. This could bridge the gap between the hospital and the real world that many survivors experience. Kremer: ‘Survivors need support beyond what doctors and psychologists can offer. It's about education, work, insurance, finances and participation in daily life. Through training, consultation, and networking, the Knowledge Center could play a leading role in providing good LATER care for survivors outside the hospital.’