204 Chapter 8 Introduction Pediatric healthcare systems around the world continue to evolve and are increasingly acknowledging the importance of delivering patient and familycentered care (PFCC) to improve all dimensions of quality, including patients’ and families’ experience with care received [1]. Encouraged by the American Academy of Pediatrics, PFCC is key in the planning, delivery, and evaluation of healthcare that is grounded in mutually beneficial partnerships among healthcare providers, patients, and families. To improve and sustain the practice of PFCC, measuring patient and families’ experience with the care received is necessary [2]. Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients’ and families’ views of their experience receiving care. PREMs assess the impact of the process of care including communication between patient, their families and healthcare providers, information sharing, involvement of patients and their families in decision-making and are commonly used as indicators to evaluate the quality of care [2,3]. In the context of the Institute for Healthcare Improvement (IHI) Triple Aim Framework, the implementation of PREMs in healthcare leads to improved outcomes while lowering healthcare costs [4]. In addition, it allows the voice of patients and their family to inform care improvement, an important concept included in the learning health system paradigm [5]. The growing adoption of PREMs in pediatric care requires the identification of appropriate PREMs and their subsequent use in healthcare settings. PREMs are centered around the experience while receiving care (e.g., hospital environment, ease of parking, call buttons near bed etc.) rather than clinical outcomes. Moreover, most of the validated PREMs are developed in high income countries which have comparable healthcare systems and services. Thus, the objective of this systematic review is to identify and synthesize evidence on the types of PREMs used in pediatric care, and their subsequent use in healthcare systems in high income countries to inform care improvement and support pediatric learning health systems paradigm. Methods Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines governed the conduct and reporting of this review [6]. The protocol has been registered with OSF (DOI 10.17605/OSF.IO/3RMNC).
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