Exploring how games can help children cope with cancer - new pilot from iManageCancer
Prof. Dr. Norbert Graf, University of Saarland
Over the last decades basic research and prospective clinical trials in cancer have led to higher cure rates or longer survival of patients with cancer resulting in more patients living with their cancer as a chronic disease. In most children cancer can be cured today with an overall survival rate of more than 80%. This improvement as shown in figure 1 is mainly due to prospective randomized clinical trials, basic research and empowering of parents of children with cancer  .
Fig. 1.: Improvement of cancer survival rates in children in Germany3.
A: 2-year overall survival between 1940 and 2010.
B: 5 year overall survival by year of diagnosis in 3-year-groups.
Data source: German Childhood Cancer Registry.
All these changes are leading to an increasing need for cancer patients and parents of children with cancer to take an active, informed and leading role in their ongoing care to improve their physical, psychological, and social aspects of health thus resulting in a better quality of life. Children with cancer have special issues, as do their parents. More than in adults support to patients needs to include the whole family. How parents of children with cancer cope with the disease influences the child’s well-being in a circular sequence of effects  . Parental distress is positively related to distress in children  . In this perspective, it is crucial to enhance empowerment and resilience of the child with cancer also through empowering all family members and peers of children or teenagers with cancer.
The pilot for children will provide tools that will empower patients, the children with cancer, their siblings as well as their peer group.
There are two main objectives of the pilot for children:
1. Will parents and their children with cancer accept the iManageCancer platform?
2. What is the impact of using the iManageCancer platform on coping with the disease for the child and the parents, but also the siblings and the peer group as a whole?
The first objective will be measured by a questionnaire included in the platform to get feedback from the users of the platform. In addition the provided audit trail will be analysed to measure the number of accesses to the platform and the time periods the platform and the different tools were used by the different users.
For answering the second question USAAR developed the so called Parental Distress Questionnaire3. This questionnaire examines the burdens of parents of children with cancer. In addition, it provides a diagnostic tool that is used to standardize and facilitate the whole patient management. Differences in answers by parents before and after usage of the iManageCancer platform will be analyzed to see the impact on quality of life in parents of children with cancer. Common usability criteria, like satisfaction with the pilot, frequency of usage of the iManageCancer platform, are defined and used as specific criteria for the evaluation of the pilot.
The pilot is designed according to figure 2. Participation in the pilot is only possible after getting informed consent. As soon as informed consent is given the participant can get access to the iManageCancer platform. In a first step parents have to fill in the distress questionnaire to get basic data on the distress of the family. Parents and the child will then be followed for 6 months using the platform. After 6 months parents have to fill in the distress questionnaire for a second time to measure changes of distress that may be related to the usage of the platform. In addition during this 6 months online questionnaires are provided to parents and the child to evaluate the platform, tools and the serious game for kids, which is a central tool of the pilot. All data of the questionnaires, the evaluation sheets will be anonymized and analysed at the end of the pilot.
Fig. 2.: Design of the pilot for children.
The serious game for kids as a central part of the pilot for children is based on a classical side scrolling parallax shooter game with strong social aspects, developed for mobile devices as smartphones and tablets.
The gamers use futuristic tiny “space ships” inside the human body to fight against virtual cancer cells with different weapons that represent the therapeutic clinical tools against cancer. In this way the message is given that weapons against cancer are available and that they can combat cancer if properly applied. Social gaming aspects are incorporated in the game to form teams with co-players like parents, siblings and friends – but also including other cancer patients who don’t have the chance to get social support via the iManageCancer platform.
Here (Fig. 3) you find some screenshots of the serious game for kids:
Fig. 3.: Few screenshots of the serious game for kids.
The serious game for kids can be played in two modes, explorer (= patient) and supporter. The supporter mode contains two different games, one is a variation of the shooter game, the other one is a Match-3-game, which may find more acceptance by elderly people or people who don’t like shooter games.
All administrative hurdles to start the pilot for children are now overcome, including Ethical approval. We are now starting to enrol children and teenagers with cancer at the Department of Paediatric Oncology and Haematology if the parents have given their informed consent for participation. Results of the Pilot for children will be reported in the future.
 Claudia Rossig, Heribert Juergens, Martin Schrappe, Anja Moericke, Günther Henze, Arend von Stackelberg, Dirk Reinhardt, Birgit Burkhardt, Wilhelm Woessmann, Martin Zimmermann, Helmut Gadner, Georg Mann, Günther Schellong, Christine Mautz-Körholz, Uta Dirksen, Stefan Bielack, Frank Berthold, Graf N, Stefan Rutkowski, Gabriele Calaminus, Peter Kaatsch, Ursula Creutzig: The Development of Effective Childhood Cancer Treatment in Germany and Austria – Review and Outlook. PBC 2013, 60, 1574-1581.
 Patterson, J.M., Garwick, A.W. The impact of chronic illness on families: A family systems perspective. Ann Behav Med, 1994, 16, 131–142.
 Dietrich K, Leiss U, Griessmeier B, Wiener A, Minetzke-Gruner AC, Linhart D, Braungart R, Graf N, Wevers-Donauer G: Belastungserleben von Eltern krebskranker Kinder. Klin Pädiatr 2016, 228, 149-156.