Late effects clinics and follow-up within DCOG LATER in the Netherlands

On behalf of the Taskforce Late Effects of the Dutch Childhood Oncology Group (DCOG LATER); board: Kremer LC¹ (chair), Van Dulmen-den Broeder E³, Van den Heuvel-Eibrink MM⁴, and Tissing WJ⁵

³Department of Oncology-Haematology, Department of Paediatrics, VU University Medical Centre, Amsterdam, The Netherlands; ⁴Department of Paediatric Oncology and Haematology, Erasmus MC, Sophia Children's Hospital, Rotterdam, The Netherlands; ⁵Department of Paediatric Oncology, University Medical Centre Groningen, Groningen, The Netherlands

Major advances in medical and supportive care have contributed to a growing population of (young adult) childhood cancer survivors. With 5-year overall survival approaching 80%, most children diagnosed with cancer today are expected to become long-term survivors. It is estimated that currently in the United States one in every 250 young adults between 15 and 45 is a survivor of childhood cancer. However, improved prognosis has been accompanied by long-term treatment-related health problems. Approximately 3 out of 4 survivors will experience one or more adverse events.

In the Netherlands medical care for survivors of childhood cancer is clustered at special outpatient late effects clinics (LATER clinics). In 2010 a nation-wide evidence-based guideline was published by the DCOG LATER Taskforce with recommendations for optimal follow-up of all potential late health problems and care for 5-year childhood cancer survivors. Every Dutch hospital with a children's oncology unit, has a LATER outpatient clinic. In these expertise centres multidisciplinary patient care guided by the Dutch follow-up guidelines, is provided.

Care for childhood cancer survivors at our outpatient clinics is based on four principles: coordination of care for survivors with multiple or complex problems, early diagnosis of treatable late effects, expertise of treatment-related effects and counselling of both patients and health-care professionals.

Every 5-year survivor of childhood cancer can be stratified based on previous treatment in risk groups. Level 1: low risk survivors, i.e. surgery only patients; can be referred back to the general practitioners providing there is transition of care in a shared care model. Level 2 medium risk survivors, those survivors who are not level 1 or 3. Level 3 high risk survivors; i.e. treated with radiotherapy or high dose anthracyclines. For level 2 and 3 survivors care is coordinated by the LATER-centre, and follow-up is tailored by previous treatment. Visits to the LATER centre can be anywhere between once every 5 years or yearly.

The DCOG LATER Taskforce emphasizes the need of specialized care for childhood cancer survivors as late effects are less common, or even rare, in matching age groups in the general population.