264 Chapter 9 Table 2. Overview of projects in which All Voices Count has been used Area of engagement Purpose Question Clinical care Bringing physiotherapeutic treatment more in line with the wishes of pediatric oncology patients. How can we make exercising more fun for you during treatment? Clinical care / policy Development of a follow-up program for children who have had surgery. How should the follow-up program look like and which themes should be discussed by the clinician? Clinical care / policy Various questions that are submitted to the children’s advisory board - Clinical care / research Investigate what problems girls with a coagulation disease and carriers encounter and how can we best help them. What does it mean for you, as a girl, to have a coagulation disease and how can we improve clinical care? Clinical care / research Studying the burden of disease in children with kidney disease How does a chronic kidney disease affect your daily live? Research Development of an International Core Outcome Set for acute simple appendicitis in children (10). What do you think is important to know to make an informed choice between two treatments for appendicitis? Research Investigate important Patient Reported Outcomes (PROs) for children treated by a pediatric physiotherapist. How does your complaint (for which you are being treated by the physiotherapist) affect your daily life? Part 2: Patient Reported Outcome Measures KLIK PROM portal The KLIK PROM portal was evaluated with all stakeholders (patients, parents, and clinicians) in this thesis (Chapter 4 and Chapter 5). In addition, we retrospectively assessed the KLIK PROM portal with the KLIK expertise team (Chapter 6). Table 3 summarizes the identified facilitators and barriers in the implementation of the KLIK PROM portal in these studies. We observed a significant overlap in the facilitating factors mentioned by the various stakeholders. The same facilitators were also reported in previous studies focusing on the use of PROMs in the adult population and a recent review in pediatric care and can ultimately contribute to PCC (11-17). Overlap is also observed in the mentioned barriers by the stakeholders. However, contradictions are visible as well. For example, clinicians reported that a low response rate of completing PROMs by patients and parents was a major barrier, while patients and parents reported that a low discussion rate by the clinicians was an important barrier. These findings may be interrelated, as patients and parents indicated that they see no added value in using PROMs if the answers are not discussed by the clinician, which potentially can result in a lower response rate. The mentioned barriers were consistent with other international studies focusing on
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