15 General introduction engagement in clinical care, policy, and research. To support clinicians with a tool to involve pediatric patients meaningfully and usefully, we developed a pediatric patient engagement tool with adolescents, as described in Chapter 3. Part 2: Patient Reported Outcome Measures As PROM implementation is a challenging process, insight into barriers and facilitating factors that influence implementation outcomes and stakeholder involvement is required. Understanding the wishes and needs of clinicians, patients, and parents (all stakeholders) is crucial. Therefore, the perspective of clinicians on the implementation of PROMs is investigated in Chapter 4. In Chapter 5, patients’ and parents’ perspective on the implementation of PROMs in clinical care is described. Chapter 6 retrospectively describes the implementation of the KLIK PROM portal using the CFIR framework and identifies implementation strategies to address the identified barriers. Insights into determinants of successful PROM implementation can both improve the implementation of the KLIK PROM portal and help others working on PROM implementation. PROMIS CATs can offer a promising solution to the burdensomeness of PROMs. Several steps are necessary to use these new instruments in clinical practice. As the PROMIS measures were initially developed in the United States [61], the first step was translation into Dutch [68] and validating the PROMIS instruments in the general population in the Netherlands [69,70]. A second step is to investigate the applicability and feasibility of the PROMIS CATs in a clinical population. Therefore, in Chapter 7 the psychometric properties of the PROMIS item banks were assessed in boys with hemophilia. Part 3: Patient Reported Experience Measures PREMs gather patients’ views of their experience with the care received and are commonly used to measure the quality of care, with the goal to make care more patient-centered [55,65,66]. With the growing adoption of PREMs in pediatric care, it is relevant to identify suitable PREMs. Chapter 8 therefore provides a systematic review of the available PREMs that can be used in pediatric care. This thesis ends with Chapter 9; a general discussion including a reflection on the main findings, clinical implications, methodological considerations, and future perspectives to promote PCC in clinical care and research. 1
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