216 Chapter 8 disease-specific, health-setting-specific), as well as their purpose and impact on quality of care in clinical practice. These findings can be used to inform PFCC initiatives at a system-level, helping to achieve the Triple Aim and supporting the learning health system paradigm [62,63]. Additionally, research has acknowledged the correlation between PREMimplementation, the establishment of the PFCC, and the promotion of quality improvement initiatives [64]. While this information is accepted in the context of adult PREMs, much less research exists regarding the implementation and assessment of pediatric PREMs [65]. This study will inform future work in the area of PREM implementation in pediatric care. The identified PREMs feature important domains addressing PFCC concepts such as shared-decision making and respecting patient values. A main gap identified in our review suggests that the use of disease-specific PREMs warrants more attention, with only five of the validated PREMs being disease-specific. Even among studies conducted in disease-specific settings, generic PREMs were more often chosen over an appropriate disease-specific tool. This may be related to the versatility and applicability of generic PREMs in more healthcare settings compared to diseasespecific PREMs. However, disease-specific PREMs issues more specific to the corresponding disease. For example, MPOC [28] is a validated PREM commonly used for children with variety of neurodevelopmental disabilities or maxillofacial disorders. MPOC assesses family caregiver’s perception of the care that their children receive at rehabilitation treatment centres, and thus can provide a better contextual understanding of patient experience specifically related to those clinical conditions. Therefore, future research examining why disease-specific PREM use and development is lacking should be explored. Additionally, while all included studies discussed the utility of using these pediatric PREMs, few examined the practicality of implementing them [66-68]. Future research examining the capacity of hospitals and physicians to incorporate these measures into clinical care is needed to pragmatically assess the likelihood of pediatric PREM administration. A significant strength of this systematic review is the inclusion of gray literature. As this review aimed to explore the range of pediatric PREMs currently in use, gray literature sources provided an exploration of real-world PREM implementation in pediatric healthcare settings around the world. We also incorporated the perspectives of international researchers with expertise in the topics of PREMs and PROMs. This bolstered the knowledge and experience of the research team and
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