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Background: Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental experiences with their child's hospitalization varied during the COVID-19 pandemic at two children's hospitals in Alberta, Canada. Methods: A random sample of parents were surveyed within six weeks of their child's discharge from Alberta's two children's hospitals. Surveys were administered using the Alberta Pediatric Inpatient Experiences Survey (APIES) - a validated instrument used to assess parental experiences during their child's hospitalization. Surveys were linked with administrative inpatient records. Three cohorts were created based on hospital discharge date: Pre-COVID (Pre: April 2019 to March 2020), COVID year one (C1: April 2020 to March 2021), and COVID year two (C2: April 2021 to March 2022). We examined 48 survey questions, including four overall rating scales. Survey responses were Likert scales. These were transformed to normalized scores from 0 (worst) to 100 (best). Differences between cohorts were assessed using ANOVA and the post-hoc Tukey test. Results: A total of 3,611 surveys (1,314 Pre; 997 C1; 1,300 C2) were completed over the three-year period. Five questions showed differences between the Pre and C1 periods, six showed differences between Pre and C2, and 13 showed differences between C1 and C2. Among these questions, scores pre-COVID were lower than COVID year one, while results in COVID year two were lower than pre-COVID and COVID year one. Thirty-one survey questions showed no statistical differences between the three time periods. For the overall ratings, only hospital rating showed a difference in any of the periods (91.4 C1 vs. 90.2 C2). Overall ratings of doctors, nurses, and recommendation of the hospital to others showed no differences. Conclusion: This study showed that the experiences of parents during the first year of the COVID-19 pandemic were mildly better or comparable to historical results. This changed over the following year, where lower scores were reported on 13 questions. [ABSTRACT FROM AUTHOR]

Introduction: Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeholders to change their behavior. The aim of this study was to utilize the Theoretical Domains Framework (TDF) to identify barriers and enablers to the implementation of PROMs in pediatric outpatient asthma clinics from healthcare providers' perspective. Methods: This TDF-guided qualitative descriptive study is part of a larger multi-phase project to develop the KidsPRO program, an electronic platform to administer, collect, and use PROMs in pediatrics. Semi-structured qualitative interviews were conducted with 17 participants, which included pediatricians, nurses, allied health professionals and administrative staff from outpatient asthma clinics. All the interviews were transcribed, deductively coded, inductively grouped in themes, and categorized into barriers and enablers. Results: We identified 33 themes within 14 TDF domains, which were further categorized and tabulated into 16 barriers and 17 enablers to implementing PROMs in asthma clinics. Barriers to behavioral change were attributed to personal, clinical, non-clinical, and other system-level factors; they ranged from limited awareness of PROMs to language barriers and patient's complex family background. Enablers ranged from a personal commitment to providing patient and family-centered care to administering PROMs electronically. Conclusion: This implementation of science-based systematic inquiry captured the complexity of PROMs implementation in pediatric outpatient clinical care for asthma. Considering the consistency in barriers and enablers to implementing PROMs across patient populations and care settings, many findings of this study will be directly applicable to other pediatric healthcare settings. [ABSTRACT FROM AUTHOR]

Purpose: The Seattle Angina Questionnaire (SAQ) is a widely used patient-reported measure of health status in patients with coronary artery disease. Comparisons of SAQ scores amongst population groups and over time rely on the assumption that its factorial structure is invariant. This study evaluates the measurement invariance of the SAQ across different demographic and clinical groups and over time. Methods: Data were obtained from the Alberta Provincial Project on Outcome Assessment in Coronary Heart Disease registry, a registry of patients who received coronary angiogram in Alberta, Canada. The study cohort consists of adult patients who completed the paper-based version of the 16-item Canadian version of the SAQ (SAQ-CAN) 2 weeks and 1-year post-coronary angiogram between 2009 and 2016. Multi-group confirmatory factor analysis was used to assess configural, weak, strong, and strict measurement invariance across age groups, sex, angina type, treatment, and over time. Model fit was assessed using the comparative fit index and root mean square error of approximation. Results: Of the 8101 patients included in these analysis, 1300 (16.1%) were at least 75 years old, while 1755 (21.7%) were female, 5154 (63.6%) were diagnosed with acute coronary syndrome, 1177 (14.5%) received coronary artery bypass graft treatment, and 3279 had complete data on the SAQ-CAN at both occasions. There was evidence of strict invariance across age, sex, and angina type, and treatment groups, but partial strict invariance was established over time. Conclusion: SAQ-CAN can be used to compare the health status of coronary artery disease patients across population groups and over time. [ABSTRACT FROM AUTHOR]

Background: Collecting and monitoring the information from patients through patient-reported experience measures (PREMs) about the quality of care they receive is important for tracking changes in healthcare quality, stimulate innovation, and enhance person-centred care. The objective of this theoretical paper is to discuss the use of implementation science theories, models, and frameworks to inform and evaluate the integration of the electronic collection of PREMs (ePREMs) in healthcare quality improvement for primary care in Canada. Methods: To assess potential knowledge-to-practice gaps in implementing ePREMs in primary care in Alberta, the overarching implementation model that will be used is the Knowledge to Action Cycle. An integrated knowledge translation approach will ensure ongoing engagement of key stakeholders (e.g. primary care providers, patients) throughout the study. ePREM implementation will be informed by the identification of barriers and facilitators to implementation using the Consolidated Framework for Implementation Research (CFIR). The CFIR brings an organizational perspective providing an opportunity to explore the intervention characteristics, the context of implementation, individual factors, and the processes that influence implementation of ePREMs in healthcare. Identified barriers and facilitators to ePREM implementation will be mapped to evidence-based implementation strategies and prioritized by stakeholders. The RE-AIM framework will be used to guide the evaluation of ePREM implementation outcomes after six months of implementation by assessing Reach, Effectiveness, Adoption, Implementation, and Maintenance (sustainability). Discussion: Consultations with stakeholders affirm the importance of using integrated knowledge translation approaches and the need to better understand how to integrate ePREMs in primary care. Using an implementations science approach, this study can provide guidance for mitigating important ePREM implementation challenges and promote the successful uptake and use of ePREMs for quality improvement in healthcare. [ABSTRACT FROM AUTHOR]

Objective To assess the efficacy of an electronic discharge communication tool (e-DCT) for preventing death or hospital readmission, as well as reducing patient-reported adverse events after hospital discharge. The e-DCT assessed has already been shown to yield high-quality discharge summaries with high levels of patient and physician satisfaction. Methods This two-arm randomised controlled trial was conducted in a Canadian tertiary care centre's internal medicine medical teaching units. Out of the 1953 patients approached and screened for inclusion, 1399 were randomised and available for data linkage for determination of the primary outcome. Participants were randomly assigned to e-DCT versus usual care (traditional discharge communication generated by dictation). The primary outcome was a composite of death or readmission within 90 days. The secondary outcome included any patient-reported adverse events within 30 days of discharge. Results Among 1399 randomised participants, 230 of 701 participants (32.8%) in the e-DCT group experienced the primary composite outcome of death or readmission within 90 days vs 205 of 698 participants (29.4%) in the usual care group (p=0.166). The incidence at 30 days of patient-reported adverse outcomes (35% for e-DCT vs 34% for usual care) and adverse events (2.1% for e-DCT vs 1.8% for usual care) also did not differ significantly between groups. Conclusions The e-DCT tested did not reduce the composite endpoint of death or readmission at 90 days, nor the incidence of patient-reported adverse events at 30 days. This neutral finding for hard clinical endpoints needs to be considered in the context of high patient and physician satisfaction, and high quality of discharge summaries. [ABSTRACT FROM AUTHOR]

Background: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care., Methods: This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre's services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals' experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre's operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres' population., Discussion: The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings., (© 2024. The Author(s).)

Designing appropriate rehabilitation programs for long COVID-19 remains challenging. The purpose of this study was to explore the patient experience of accessing long COVID-19 rehabilitation and recovery services. In this cross-sectional, observational study, a telephone survey was administered to a random sample of persons with long COVID-19 in a Canadian province. Participants included adults who tested positive for COVID-19 between March and October 2021. Survey respondents ( n = 330) included individuals who had been previously hospitalized for COVID-19 ( n = 165) and those who had not been hospitalized ('non-hospitalized') for COVID-19 ( n = 165). Significantly more previously hospitalized respondents visited a family doctor for long COVID-19 symptoms compared to non-hospitalized respondents (hospitalized: n = 109 (66.1%); non-hospitalized: n = 25 (15.2%); ( p < 0.0001)). Previously hospitalized respondents reported significantly more referrals to specialty healthcare providers for long COVID-19 sym`ptoms (hospitalized: n = 45 (27.3%); non-hospitalized: n = 6 (3.6%); ( p < 0.001)). A comparable number of respondents in both groups accessed care services that did not require a referral to manage their long COVID-19 symptoms (hospitalized: n = 31 (18.8%); non-hospitalized: n = 20 (12.1%); ( p = 0.20)). These findings demonstrate the diversity of recovery services used by individuals with long COVID-19 and emphasize the need for multidisciplinary long COVID-19 rehabilitation and recovery care pathways.

Background: In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement., Methods: The methodological framework of Arksey & O'Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated., Results: A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age., Discussion: This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects., (© 2023. The Author(s).)

Background: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system., Methods: We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system., Results: There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual's beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided., Conclusions: Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings., (© 2023. The Author(s).)

The study objective was to explore the experiences of parents of children (6-17 years) with complex mental healthcare needs in accessing healthcare services in Alberta, Canada. Parents were interviewed using a semi-structured guide with open-ended and probing questions. Interviews were audio recorded and transcribed verbatim. Thematic analysis revealed three main themes: (1) Fragmented healthcare services profoundly impacted participants' experience of mental health care due to (a) a lack of a collaborative approach across disciplines in the healthcare system; (b) unavailability of information related to mental health care and (c) a lack of patient-centred care. (2) Navigating the complex healthcare system was difficult due to fragmented services and was hindered by gaps in accessing and receiving care, lack of continuity of care and lack of resources. (3) Distressed parents discussed the emotional challenges, financial burdens, self-advocacy and stigma they experienced in navigating the system. Parents offered insights into potential solutions to these gaps. Parents recommended the creation of a one-stop shop service with a team approach led by a navigator to facilitate and support navigations across healthcare services that work collaboratively across disciplines among healthcare services and across sectors inclusive of social services, education, policing and community programmes.

Background and Objectives: Children living with medical complexity (CMC) experience frequent hospital admissions. Validated patient-reported experience measures may inform care improvements in this cohort. Our objectives were to examine the comprehensive inpatient experience of CMC by using a validated patient-reported experience measure and compare the results with all other respondents at 2 academic pediatric hospitals in a western Canadian province., Methods: Parents completed the Child Hospital Consumer Assessment of Healthcare Providers and Systems survey. Surveys were linked with inpatient records, and an accepted case definition was used to extract records pertaining to CMC. Results were reported as percent in "top box," represented by the most positive answer choice to each measure. Odds of reporting a top box response were calculated while controlling for demographic and clinical features., Results: From October 2015 to March 2019, 4197 surveys (1515 CMC; 2682 non-CMC) were collected. Among CMC, the highest-rated measures pertained to being kept informed while in the emergency department, a willingness to recommend the hospital, and parents having a clear understanding of their role in their child's care. The lowest-rated measures pertained to preventing mistakes and reporting concerns and the quietness of the hospital room at night. Compared with others, parents of CMC reported lower raw results on 20 of the 28 measures. They also reported lower a odds of reporting a top box score on 2 measures and higher odds on 1., Conclusions: Parents of CMC revealed many perceived gaps. These findings can be used to inform strategies to improve care among CMC and policies to support the care of CMC and their families., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2021 by the American Academy of Pediatrics.)

Objectives: East African (EA) women are a subpopulation who are at very high risk for gestational diabetes (GDM) and poor obstetric outcomes, but little is known about the care experiences of this understudied group. The objective of this study was to document the impact of a diagnosis of GDM and the perceptions of diabetes care among EA immigrant women., Methods: Semistructured in-depth interviews were conducted with 10 EA immigrant women diagnosed with GDM in Calgary; they were recruited from community and tertiary care settings. Interviews were transcribed verbatim and analyzed using inductive thematic content analysis to explore participants' experiences when accessing and receiving care., Results: EA immigrant women had varied experiences related to GDM. Thematic analysis revealed the negative impact of GDM diagnoses on women, including the burdens of self-care, fear, community influences and cultural and financial barriers. The positive impacts of the experience of diagnosis noted were primarily in the empowerment to make healthful behaviour changes., Conclusions: Study findings point to the need for more context-specific and culturally appropriate support and care. Diagnoses of GDM extended beyond the individuals affected and impacted their families culturally, psychologically and financially. Addressing the emergent themes during pregnancy is imperative to improving care providers' engagement with EA immigrant women in postpartum diabetes screening activities and beyond. The findings of this study contain elements transferable to other immigrant groups in similar socioecologic contexts., (Copyright © 2018. Published by Elsevier Inc.)