275 Discussion talk about subjects on all levels of health care (i.e., clinical care, policy, and research). Examples of discussed questions are related to nutrition, development of a follow-up program, recruitment methods in research, and reviewing new information material. Regular evaluations are needed to keep these children motivated and to ensure that engagement contributes to decision-making. Part 2: Patient Reported Outcome Measures Patient Reported Outcome Measures and the impact on patient-centered care This thesis showed that PROMs are effective to use in daily clinical practice to monitor patient’s functioning and to improve patient-clinician communication. However, we did not study how PROM information is used in the consultation room by clinicians, patients, and parents. For future research, it would be interesting to gain insight into the actions taken with regard to the completed PROMs and to expand knowledge about how this contributes to the enhancement of PCC. The use of video observations in the consultation room may provide this information and can be used for both quantitative as qualitative analyses with regard to the content as well as non-verbal communication. In addition, future research should focus on patient preferences for visualization of PROM feedback (i.e., graphs) and testing the accuracy of interpretation of these visualizations. Only when patients can interpret PROM feedback, it gives them insight into their own functioning and PROMs can optimally be discussed in the consultation room. Patient Reported Outcome Measures and shared-decision making A part of PCC that has not been addressed in this thesis is shared-decision making (fits with common element 7 of the New England Journal of Medicine (NEJM) Catalyst model of PCC (67)). Shared-decision making is a conversation model involving patients in health care decisions (68, 69). In shared-decision making patients are engaged to think about the available treatment options and work together with the clinician to select the best tests and treatments based on the available evidence and the preferences and values of the patient (69, 70). PROM data, at individual level and aggregated level, can be helpful in shared-decision making, as it provides information about patient’s preferences and values and benefits and harm of options (69, 71, 72). However, more information is needed about how PROMs can be linked to shared-decision making and how clinicians can be trained to use this information (69). Recent initiatives from our research group are focused on the use of PROMs in the shared-decision making process. This research will provide information and training on how to use PROMs in the process of shared-decision making (73). 9
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