The possible e-health interventions persuaded medical psychologist Loes van Erp to start her doctoral research four years ago: ‘I'm very interested in the interaction between physical and mental health and disease. A lot changes in the young adult stage of life: people develop their independence and identity. The influence of health is great at such a crucial stage of life. This topic was right up my alley because I like to think about innovative ways of offering help, such as e-health. In the end, we actually developed an e-health module, part of Op Koers online program for young adult survivors of childhood cancer.'
Questionnaires
Good scientific research on survivors' well-being cannot be done without involving them, Loes believes: 'It is very important to talk with them, rather than only about them. Jaap den Hartogh and Eline van der Meulen, representatives of survivor organization VOX, reviewed our information letters and questionnaires in advance. In fact, all data collected for our studies came from questionnaires. In addition, we used detailed data on diagnosis and treatment from the extensive LATER registry and LATER studies of all survivors in the Netherlands who were diagnosed before 2001. With large numbers of participants, it is possible to do detailed analyses.'
Health-related
'In my dissertation I describe the health-related quality of life (HRQOL) of survivors,' Loes continues. 'These studies show that they are at higher risk of having a worse HRQOL than peers from the general population. Attention to vitality, cognition, and consideration of women are important. Female survivors appear to experience a greater impact of childhood cancer on their HRQOL than male survivors. In addition, we conclude that people who developed cancer in their childhood are potentially more vulnerable than their peers who have not had cancer. As a group, they report more anxiety and depression, lower HRQOL, and more fatigue than the norm. Despite this vulnerability, most of them go through a normal psychosocial development trajectory and experience a positive impact of cancer in addition to a negative one. For example: the feeling of being able to connect well with their peers socially or generally being able to talk well with their parents about their disease process. Our studies thus show resilience in addition to vulnerability.'
Systematic attention
The e-health module developed is based on cognitive behavioral therapy and has a preventive approach. Loes van Erp: 'This study gives a first indication of the feasibility and potential effectiveness of the intervention in improving psychosocial outcomes. 80% of young adults who have had cancer as a child are in need of support, especially for information and counseling in the area of late effects of childhood cancer and lifestyle. The results also underline the systematic attention that is needed for quality of life, which we stand for in the Máxima Center. We can monitor this with KLIK, and we do this systematically for all children with cancer. If we can teach survivors how to deal with the consequences of childhood cancer at an early stage, we hope to prevent psychosocial problems later in life.’