87 Development of a patient engagement tool; All Voices Count Discussion Working together with adolescents, we co-developed and tested the usability of a paediatric patient engagement game, All Voices Count. This resulted in a valued tool that makes it easier for clinicians to include the input from paediatric patients in the decision-making process of hospital care, research and policy. Overall, adolescents were pleased with All Voices Count as it enables them to express their opinion and experiences regarding different topics in health care more easily. The first step in developing All Voices Count was to identify important themes for adolescents regarding their chronic condition, treatment and hospital care. Further development of the game was based on these themes to connect to the perception of adolescents with a chronic condition. The identified themes were aligned with previous studies [31-33], in which participation in daily life, being normal, treatment, social environment and communication about their disease were also seen as important themes by adolescents with other conditions. This corroboration showed that adolescents, regardless of their chronic condition, face similar difficulties and supportive factors. Since the development of All Voices Count, the game has been used to include the opinion of adolescents in several projects in our hospital. For example, All Voices Count was used during the development of an International Core Outcome Set for acute simple appendicitis in children [34]. With the use of All Voices Count, important outcomes for adolescents in determining the effectiveness of treatment were identified (What do you think is important to know to make an informed choice between two treatments for appendicitis?) and subsequently prioritized. In addition, we are planning to use All Voices Count for questions from physiotherapist of the department of oncology (How can we make exercising more fun for you during treatment?) to improve daily hospital care, for questions from researchers and clinicians from the haematology department (What does it mean for you, as a girl, to have a coagulation disease and how can we improve the care?), and for questions from clinicians and policy makers from the paediatric surgery department (How should the follow-up programme look like and which themes should be discussed by the clinician?) for setting up a new follow-up programme. Other purposes for which the game could be used are within the Kids Advisory Board of the children’s hospitals and to discuss new research ideas with adolescents while writing a grant proposal. Engaging patients in the development of new research projects is increasingly mentioned as a requirement for research funding [35,36]. 3
RkJQdWJsaXNoZXIy MTk4NDMw