Investigating the Implementation of Pediatric Patient-reported Outcome and Experience Measures in Alberta

Patient- and Family-Centered Care (PFCC) is grounded in mutually beneficial partnerships among healthcare providers, patients, and families to promote a collaborative way of planning, delivering, and evaluating healthcare. Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) play a crucial role in promoting and supporting PFCC. However, implementation of PROMs and PREMs is lagging compared to the adult population. Alberta Health Services (AHS) has established a Patient First Strategy, an organization-wide initiative to improve PFCC practices, but pediatric PROMs and PREMs are not regularly used in clinical care in Alberta. The current thesis investigates the uptake, barriers, and feasibility of integrating PROMs and PREMs in Alberta's pediatric healthcare systems to facilitate their province-wide implementation.This thesis work was conducted in three phases. The first phase includes two systematic reviews. The first systematic review was conducted to synthesize evidence on the impact of implementing PROMs in pediatric clinical care. The findings of this review show that integrating PROMs in routine pediatric clinical care positively impacts Health-related Quality of Life (HRQoL) and increases satisfaction among patients, parents and healthcare providers. The second systematic review was conducted to identify pediatric PREMs, synthesize the evidence on their use in pediatric healthcare settings, and understand their characteristics. This systematic review identified 49 pediatric PREMs currently used in pediatric health systems worldwide. There was a great diversity in the types of PREMs, their characteristics and mode of administration.The second phase of this thesis was a mixed-methods study. PROMs and PREMs are not regularly implemented in pediatric health systems in Alberta. Therefore, a mixed-methods study was conducted to understand the current uptake of pediatric PROMs and PREMs in Alberta and the challenges associated with their implementation in routine pediatric clinical care in Alberta. This study identified 33 PROMs and 6 PREMs showing huge diversity in the types of pediatric PROMs and PREMs currently used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records systems, is considered a significant system-level challenge. The third phase of this thesis was a case study of implementing PROMs in outpatient pediatric asthma clinics. This phase consisted of two studies. The first study employed a Theoretical Domains Framework (TDF) - guided qualitative inquiry to identify barriers and enablers to implementing PROMs at the outpatient asthma clinics. This study identified 16 barriers to behavioral change required to integrate PROMs into routine clinical care for asthma. These barriers are associated with personal, clinical, non-clinical, and system-level factors. Seventeen enablers to integrating PROMs in asthma clinics were also identified. These enablers ranged from healthcare providers' personal commitment to providing PFCC to optimism about the positive impact of PROMs. The second study in this phase utilized a quantitative survey to assess the feasibility of integrating Pediatric Quality of Life InventoryTM (PedsQLTM) PROM in asthma clinics using the KidsPRO program, an innovative electronic health program. The findings of this study showed that implementing PROMs in the pediatric outpatient asthma clinics is feasible.All the findings of this research provide global, provincial and local level evidence for AHS to support their plans to implement PROMs and PREMs to deliver PFCC in the pediatric health systems in Alberta