Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study.

BACKGROUND: Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system. METHODS: Pediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed. RESULTS: Participants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being 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, is considered a significant system-level challenge. CONCLUSIONS: The significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.

Using the Theoretical Domains Framework to Identify Barriers and Enablers to Implementing a Virtual Tertiary-Regional Telemedicine Rounding and Consultation for Kids (TRaC-K) Model: Qualitative Study.

BACKGROUND: Inequities in access to health services are a global concern and a concern for Canadian populations living in rural areas. Rural children hospitalized at tertiary children's hospitals have higher rates of medical complexity and experience more expensive hospitalizations and more frequent readmissions. The 2 tertiary pediatric hospitals in Alberta, Canada, have already been operating above capacity, but the pediatric beds at regional hospitals are underused. Such imbalance could lead to poor patient safety and increased readmission risk at tertiary pediatric hospitals and diminish the clinical exposure of regional pediatric health care providers, erode their confidence, and compel health systems to further reduce the capacity at regional sites. A Telemedicine Rounding and Consultation for Kids (TRaC-K) model was proposed to enable health care providers at Alberta Children's Hospital to partner with their counterparts at Medicine Hat Regional Hospital to provide inpatient clinical care for pediatric patients who would otherwise have to travel or be transferred to the tertiary site. OBJECTIVE: The aim of this study is to identify perceived barriers and enablers to implementing the TRaC-K model. METHODS: This study was guided by the Theoretical Domains Framework (TDF) and used qualitative methods. We collected qualitative data from 42 participants from tertiary and regional hospitals through 31 semistructured interviews and 2 focus groups. These data were thematically analyzed to identify major subthemes within each TDF domain. These subthemes were further aggregated and categorized into barriers or enablers to implementing the TRaC-K model and were tabulated separately. RESULTS: Our study identified 31 subthemes in 14 TDF domains, ranging from administrative issues to specific clinical conditions. We were able to merge these subthemes into larger themes and categorize them into 4 barriers and 4 enablers. Our findings showed that the barriers were lack of awareness of telemedicine, skills to provide virtual clinical care, unclear processes and resources to support TRaC-K, and concerns about clear roles and responsibilities. The enablers were health care providers' motivation to provide care closer to home, supporting system resource stewardship, site and practice compatibility, and motivation to strengthen tertiary-regional relationships. CONCLUSIONS: This systematic inquiry into the perceived barriers and enablers to the implementation of TRaC-K helped us to gain insights from various health care providers' and family members' perspectives. We will use these findings to design interventions to overcome the identified barriers and harness the enablers to encourage successful implementation of TRaC-K. These findings will inform the implementation of telemedicine-based interventions in pediatric settings in other parts of Canada and beyond. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1186/s12913-018-3859-2.

Barriers and enablers to implementing a virtual tertiary-regional Telemedicine Rounding and Consultation (TRAC) model of inpatient pediatric care using the Theoretical Domains Framework (TDF) approach: a study protocol.

BACKGROUND: Over-occupancy at the two tertiary pediatric care hospitals in Alberta, Canada is steadily increasing with simultaneous decline in occupancy of pediatric beds at regional hospitals. Over-occupancy negatively impacts timeliness and potentially, the safety of patient care provided at these two tertiary hospitals. In contrast, underutilization of pediatric beds at regional hospitals poses the risk of losing beds provincially, dilution of regional pediatric expertise and potential erosion of confidence by regional providers. One approach to the current situation in provincial pediatric care capacity is development of telemedicine based innovative models of care that increase the population of patients cared for in regional pediatric beds. A Telemedicine Rounding and Consultation (TRAC) model involves discussing patient care or aspects of their care using telemedicine by employing visual displays, audio and information sharing between tertiary and regional hospitals. To facilitate implementation of a TRAC model, it is essential to understand the perceived barriers among its potential users in local context. The current study utilizes qualitative methodologies to assess these perceived clinician barriers to inform a future pilot and evaluation of this innovative virtual pediatric tertiary-regional collaborative care model in Alberta. METHODS: We will use a qualitative descriptive design guided by the Theoretical Domain Framework (TDF) to systematically identify the tertiary and regional clinical stakeholder's perceived barriers and enablers to the implementation of proposed TRAC model of inpatient pediatric care. Semi-structured interviews and focus groups with pediatricians, nurses and allied health professionals, administrators, and family members will be conducted to identify key barriers and enablers to implementation of the TRAC model using TDF. Appropriate behaviour change techniques will be identified to develop potential intervention strategies to overcome identified barriers. These intervention strategies will facilitate implementation of the TRAC model during the pilot phase. DISCUSSION: The proposed TRAC model has the potential to address the imbalance between utilization of regional and tertiary inpatient pediatric facilities in Alberta. Knowledge generated regarding barriers and enablers to the TRAC model and the process outlined in this study could be used by health services researchers to develop similar telemedicine-based interventions in Canada and other parts of the world.

Defining the Black population in Canadian health research: a scoping review protocol.

INTRODUCTION: In the context of health research in Canada, various terms and labels have been employed to reference the Black population. This practice has had the unintended consequence of diminishing the comparability and efficiency of studies. Furthermore, using a broad term such as 'Black' may fail to encompass the diversity and intricacy of the ethnocultural backgrounds of people who are racialised as such. It may also obscure the subtleties of their experiences and health outcomes. This study aims to examine how health researchers have defined Black within the scope of their work and different labels used to identify the Black population in Canada. METHODS AND ANALYSIS: We have developed and employed a comprehensive and sensitive search strategy to identify articles concerning the health and wellness of the Black population in Canada. Both peer-reviewed and grey literature will be searched. Original articles published in both English and French will be included. The screening process will consist of two stages: the title and abstract screening, followed by a thorough examination of full-text articles. Additionally, single citation tracking and manual search of reference lists will be conducted. Study characteristics and relevant information on the definition of the Black population will be extracted, followed by reflective thematic analysis and presentation of the key findings. ETHICS AND DISSEMINATION: This review will not require ethical approval. We will disseminate the results through meetings with stakeholders. From the beginning, a knowledge translation approach was decided upon following consultation with citizen researchers and community champions. Our findings will also be disseminated through oral and poster presentations, peer-reviewed publications, and social media.

Factors affecting implementation of patient-reported outcome and experience measures in a pediatric health system.

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.

Implementing paediatric patient-reported outcome measures in outpatient asthma clinics: a feasibility assessment study.

OBJECTIVE: Implementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore, this study (1) describes the development of innovative KidsPRO programme and (2) reports on the feasibility of implementing PedsQL (Pediatric Quality of Life Inventory) PROM in asthma clinics using the KidsPRO programme. DESIGN: Feasibility assessment study. SETTING: Outpatient paediatric asthma clinics in the city of Calgary, Canada. PARTICIPANTS: Five paediatric patients, four family caregivers and three healthcare providers were recruited to pilot the implementation of PedsQL PROM using KidsPRO. Then, a survey was used to assess its feasibility among these study participants. MAIN OUTCOME MEASURES: Participants' understanding of using PROMs, the adequacy of support provided to them, the utility of using PROMs as part of their appointment, and their satisfaction with using PROMs. ANALYSES: The quantitative data generated through closed-ended questions was analysed and represented in the form of bar charts for each category of study participants (ie, patients, their family caregivers and healthcare providers). The qualitative data generated through the open-ended questions were content analysed and categorised into themes. RESULTS: The experience of using PROMs was overwhelmingly positive among patients and their family caregivers, results were mixed among healthcare providers. Qualitative data collected through open-ended questions also complemented the quantitative findings. CONCLUSION: The evidence from this study reveals that the implementation of PROMs in routine paediatric clinical care asthma clinics in Alberta is seems to be feasible.

Patient-reported outcome measures in pediatric asthma care: using theoretical domains framework to explore healthcare providers' perceptions.

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.

Patient-identified priorities for successful partnerships in patient-oriented research.

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR's key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members.

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research (AbSPORU) Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR's key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members.

Use of Patient-Reported Experience Measures in Pediatric Care: A Systematic Review.

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics. Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics. Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses. Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves. Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics.

Patient-Reported Outcome Measures in Routine Pediatric Clinical Care: A Systematic Review.

Introduction: Integration of patient-reported outcome measures (PROMs) in routine clinical care is growing but lacks consolidated evidence around its impact on pediatric care. This systematic review aims to evaluate the impact of integrating PROMs in routine pediatric clinical care on various outcomes in pediatric clinical care. Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Library. Web of Science database was searched selectively to ensure extended coverage. Study Selection: We included longitudinal studies reporting on the integration of PROMs in routine pediatric clinical care of chronic diseases. Studies in languages other than English, published prior to the year 2000, and reporting on secondary data were excluded. Data Extraction: Two reviewers independently extracted data from included studies. Extracted data included citation of each study, type of healthcare setting, location of the study, characteristics of patient population, type of chronic disease, name and type of PROM, mode of administration, and reported outcomes. Results: Out of 6,869 articles, titles and abstracts of 5,416 articles and full text of 23 articles were screened in duplicate. Seven articles reporting results from six studies met eligibility criteria. Integration of PROMs increased the identification and discussion around health-related quality of life (HRQOL), especially in psychosocial and emotional domains, but showed mixed results with the impact on quality of care. No studies assessed the impact of integrating PROMs on healthcare utilization. Limitations: Due to significant heterogeneity in the studies, a meta-analysis was not conducted. Conclusions: Integrating PROMs could have a positive impact on HRQOL; however, further studies are required to determine the impact of PROMs in routine pediatric clinical care.

The Quest for Value in Canadian Healthcare: The Applied Value in Healthcare Framework.

The exponential rise in healthcare costs in developed nations has sharpened the need for greater "value" in healthcare. Porter's (2010) seminal work is one of the most cited definitions and equation for value-based care. The pursuit of greater value in our healthcare system is of paramount importance, yet translating value-based healthcare (VBHC) into a framework that can be effectively utilized in the Canadian system remains a challenge. To address this challenge, we propose that VBHC can be adapted to fit the Canadian healthcare system through (1) visionary leadership for and conceptualization of VBHC at the federal government level and (2) thoughtful application of VBHC at the provincial government level. Our applied value in healthcare framework serves as a platform from which VBHC initiatives, programs and outcome measures can be systematically organized and executed within provincial healthcare systems. This methodical approach could support both provincial ministries and their health systems in pursuit of VBHC and provide the basis for explicit measurement of VBHC success, thereby helping to address the pressing issue of sustainability of the Canadian healthcare system while optimizing patient-centred outcomes of care.

Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

INTRODUCTION: Chronic diseases among children are associated with lower health-related quality of life (HRQOL) and higher utilisation of healthcare services. Integrating Patient-Reported Outcomes Measures (PROMs) in routine clinical care has been shown to reduce utilisation of healthcare services while improving patient outcomes. The objectives of our study are to: (1) identify previously implemented and evaluated PROMs for chronic conditions in paediatric settings; (2) consolidate the evidence to evaluate the impact of using PROMs on HRQOL, healthcare utilisation, patient outcomes (eg, symptoms control) and quality of care among paediatric patients with chronic conditions. The findings from this review will inform the future integration of PROMs in paediatric clinical practice. METHODS AND ANALYSIS: We will systematically search the following electronic databases: MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane library. Reference lists of included studies will also be searched in Web of Science (Thomson Reuters) database to ensure more complete coverage. Two reviewers will independently screen the studies and abstract the data using standardised form. Extracted data will be analysed and synthesised. Finally, a narrative synthesis of summarised data will be presented. ETHICS AND DISSEMINATION: Ethical approval is not required, as the proposed systematic review will use data from published research articles. The results of this study will be disseminated through publication in peer-reviewed journals, scientific conferences and meetings, and the lead author's doctoral dissertation. PROSPERO REGISTRATION NUMBER: CRD42018109035.

Population aging and migrant workers: bottlenecks in tuberculosis control in rural China.

BACKGROUND: Tuberculosis is a serious global health problem. Its paradigms are shifting through time, especially in rapidly developing countries such as China. Health providers in China are at the forefront of the battle against tuberculosis; however, there are few empirical studies on health providers' perspectives on the challenges they face in tuberculosis control at the county level in China. This study was conducted among health providers to explore their experiences with tuberculosis control in order to identify bottlenecks and emerging challenges in controlling tuberculosis in rural China. METHODS: A qualitative approach was used. Semi-structured, in-depth interviews were conducted with 17 health providers working in various positions within the health system of one rural county (ZJG) of China. Data were analyzed based on thematic content analysis using MAXQDA 10 qualitative data analysis software. RESULTS: Health providers reported several problems in tuberculosis control in ZJG county. Migrant workers and the elderly were repeatedly documented as the main obstacles in effective tuberculosis control in the county. At a personal level, doctors showed their frustration with the lack of new drugs for treating tuberculosis patients, and their opinions varied regarding incentives for referring patients. CONCLUSION: The results suggest that several problems still remain for controlling tuberculosis in rural China. Tuberculosis control efforts need to make reaching the most vulnerable populations a priority and encourage local health providers to adopt innovative practices in the local context based on national guidelines to achieve the best results. Considerable changes in China's National Tuberculosis Control Program are needed to tackle these emerging challenges faced by health workers at the county level.