Prof. Martha Grootenhuis is not only head of psycho-oncological care, but also group leader at the Princess Máxima Center. Her research group studies the psychological effects and quality of life of children with cancer and their families. ‘At first glance, quality of life is quite a subjective topic. That is why we use questionnaires in the KLIK (‘Mapping Quality of Life’) portal. Just asking how things are going is not enough – we need a broad perspective of the child. The care and research in the field of quality of life focuses on four topics: how is the child doing physically, socially, emotionally and cognitively?
Mapping quality of life
KLIK stands for Kwaliteit van Leven in Kaart, ‘Mapping Quality of Life’. Grootenhuis developed the method during her time at the Emma Children's Hospital in Amsterdam. She says: 'We ask everyone who comes in here – children with cancer, parents and survivors – to tell us how they are doing using KLIK. This systematic attention to quality of life is extremely important and truly unique to the Máxima. During the treatment, parents and child complete a questionnaire approximately every three months, and less often afterwards. The answers to the questionnaire are discussed with the pediatric oncologist or nurse specialist; just like other test results such as blood tests. By paying quality of life active and systematic attention, it is easier to identify any problems. This creates scope for tailored help for children and their families. So it’s very important that every completed questionnaire is discussed!’
Basis for research
The questionnaires to monitor quality of life are primarily intended for the consulting room. But the information also forms a crucial basis for research into quality of life. 'To improve the quality of life, you first need insight into what it is like now,’ Grootenhuis explains. ‘You first look at how often a particular problem occurs, such as fatigue or sleeping problems, and which children are at risk. Then you think about what you can do about it: you develop an intervention. We now offer sleep sessions with a sleep coach for children with sleeping problems. We are awaiting the results of this Micado study to measure the effectiveness of the sleeping sessions: does the intervention really work? If that turns out to be the case, the last step is to integrate the intervention into the available options for treatment.’
Personalized care
Grootenhuis: ‘The aim of our research is to prevent psychosocial problems as much as possible. We want to give families facing childhood cancer the tools to deal with this major challenge. Our care needs to be truly personalized. Some children or parents are at a greater risk of certain symptoms, from fatigue to loneliness. And some interventions are more suitable for a child than others. We need a wide range of interventions to offer tailored support. That is why research is so important: we are always looking for new interventions, and keep studying the existing programs to see if they can be improved.’