Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.

BACKGROUND: In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them. This study aimed to prioritize PROMs by youth and family/caregiver based on feasibility, relevance, and overall importance to be used in the clinical care of youth living with anxiety and/or depression. METHODS: Ten validated and widely used PROMs were presented to the patients and family/caregivers. Nominal group techniques were employed to prioritize the PROMs based on feasibility, relevance, and overall importance. RESULTS: For patients and families/caregivers, the PROMs, Revised Child Anxiety and Depression Scale (RCAD 25), and The Young Person's Core (YP-CORE) were the highest priorities. Both felt that RCAD 25 was comprehensive, short, easy, and quick to complete, whereas regarding YP-CORE, patients and family/caregivers thought it was also short and relevant. Due to some specific concerns, the Strength and Difficulties Questionnaire and Child Health Questionnaire were the lowest prioritized by patients and family/caregivers. CONCLUSION: It is of utmost importance that patient's and family/caregivers' voices or opinions are considered while selecting and implementing PROMs in mental health settings. Our study provides practical recommendations around measures best suited to achieve this.

Examining the Relationship Between Screening for Postpartum Depression and Associated Child Health Service Utilization and Costs: A Study Using the All Our Families Cohort and Administrative Data.

INTRODUCTION: Despite a recognized association between maternal postpartum depression (PPD) and adverse child health outcomes, evidence examining the relationship between PPD symptoms and associated child health service utilization and costs remains unclear. In addition, there is a paucity of evidence describing the relationship between early identification of maternal PPD and associated health service utilization and costs for children. This study aims to address this gap by describing the secondary associations of screening for maternal PPD and annual health service utilization and costs for children over their first five years of life. METHODS: Mothers and children enrolled in the prospective All Our Families cohort were linked to provincial administrative data in Alberta, Canada. Multivariable generalized linear models were used to estimate the average annual inpatient, outpatient, physician, and total health service utilization and costs from a public health system perspective for children of mothers screened high risk for PPD, low/moderate risk for PPD, or unscreened. RESULTS: Total mean costs were greatest for children during their first year of life than other years. Those whose mothers were not screened had significantly lower costs compared to those whose mothers were screened low/moderate risk, despite equivalent health service utilization. DISCUSSION: Findings from this study describe the secondary associations of screening for maternal PPD using a public health system perspective. More research is required to fully understand variations in health costs for children across maternal PPD screening categories.

This study describes the relationship between maternal PPD screening status and annual child health service utilization and costs over the first five years of age. Findings from this administrative data study will support decision-makers in understanding the secondary effects associated with maternal PPD screening and inform future cost-effectiveness analyses of PPD screening interventions using a maternal-child health perspective.

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.

Working together in health research: a mixed-methods patient engagement evaluation.

BACKGROUND: In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. METHODS: The RePORT PAC members included nine PRPs and nine researchers (clinician-researchers, research staff, patient engagement experts) from both Alberta and British Columbia. All members were contacted and invited to complete an anonymous online survey (Public and Patient Engagement Evaluation (PPEET) tool) at two different project times points. The PAC was invited for a semi-structured interview to gain in-depth understanding of their experiences working together. Interviews were audio-recorded, transcribed, and the data was thematically analyzed with the support of a qualitative analysis software, NVivo. RESULTS: A total of nine PRPs (100%) and three researchers (33%) participated in the baseline survey in February 2022 while six PRPs (67%) responded and three researchers (33%) completed the follow up survey in May 2022. For the semi-structured interviews, nine PRPs (100%) and six researchers (67%) participated. According to the survey results, PAC members agreed that the supports (e. g. training, compensation) needed to contribute to the project were available throughout the project. The survey responses also showed that most members of the PAC felt their opinions and views were heard. Responses to the survey regarding diversity within the PAC were mixed. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. PAC members mentioned that PAC PRPs informed the co-development of research materials such as recruitment posters and interview guides for the RePORT study. CONCLUSIONS: Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement within our research partnership involving PRPs and researchers as well as recommendations for POR projects more broadly, going forward.

Patient research partners contribute their valuable knowledge, lived experiences, and skills in health research projects. However, research looking to understand how patient partners and researchers can work together in a meaningful and collaborative way remains limited. We aim to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers. We used a mixed methods design as it provided the opportunity to gather more insights from the RePORT PAC members' engagement experiences throughout the study and provide a deeper understanding on the barriers and facilitators to working together. We involved diverse patient research partners, clinicians/researchers, patient engagement organization team members and other stakeholders from the RePORT PAC. All PAC members were invited to complete an anonymous online survey as well as a semi-structured interview. Patient research partners appreciated the supports (e.g. training, compensation) provided throughout the project. Most PAC members felt that their views and opinions were heard, which further facilitated a collaborative team environment. There were many suggestions for improving diversity and collaboration provided by PAC members during the semi-structured interviews. Through fostering a collaborative environment, we can engage a diverse group of people to work together meaningfully in health research. We have identified what works well, and areas for improvement in our research partnership and recommendations for patient-oriented research projects more broadly, going forward.

Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study.

OBJECTIVE: To gain an insight into coping strategies that people living with chronic pain use to self-manage their pain. DESIGN: This qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were considered and addressed throughout the research cycle. Purposeful sampling was used for recruiting individuals living with chronic pain. A focus group and one-on-one semi-structured interviews were conducted via videoconference. The data were analysed iteratively using inductive thematic analysis and narrative story analysis. SETTING: Calgary, Alberta, Canada. PARTICIPANTS: Eleven adult participants, between the ages of 18 and 65, who self-identified as living with chronic pain for greater than 2 years. RESULTS: Three main themes emerged from the data: (1) the elements of chronic pain, (2) the chronic pain journey to acceptance and (3) daily coping strategies for chronic pain. Participants thought it was important to discuss these three themes because the daily coping strategies that they employed at any given time (theme 3) depended on the factors discussed in themes 1 and 2. Overlaying all of this is also a grieving process that people living with chronic pain may have to go through more than once. Participants also identified recommendations for healthcare professionals to support people living with chronic pain. CONCLUSIONS: Dealing with chronic pain affects all aspects of a person's life and involves a grieving process. When treating patients with chronic pain, it is important for healthcare professionals to understand the journey that people living with chronic pain go through, not just coping strategies. Diagnosis is critical for a patient's acceptance and in helping them find their new normal where they can employ daily coping strategies to manage their pain.

Co-developing patient and family engagement indicators for health system improvement with healthcare system stakeholders: a consensus study.

OBJECTIVE: To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach. DESIGN: This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks. This phase included surveys and one-on-one semi-structured interviews aimed to further explore the use of PPEET in this context. Findings from the survey and interviews informed the development of PFE-Is; (3) a Delphi consensus process using a modified RAND/UCLA Appropriateness Method to identify and refine a core set of PFE-Is. PARTICIPANTS: The consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare leadership. RESULTS: From an initial list of 33 evidence-based PFE-Is identified, the consensus process yielded 18 final indicators. These PFE-Is were grouped into seven themes: communication, comfort to contribute, support needed for engagement, impact and influence of engagement initiative, diversity of perspectives, respectful engagement, and working together indicators. CONCLUSIONS: This group of final patient, family and health system leaders informed indicators can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation.

Informing the implementation and use of person-centred quality indicators: a mixed methods study on the readiness, barriers and facilitators to implementation in Canada.

OBJECTIVES: To ensure optimal implementation of person-centred quality indicators (PC-QIs), we assessed the readiness of Canadian healthcare organisations and explored their perceived barriers and facilitators to implementing and using PC-QIs. DESIGN: Mixed methods. SETTING AND PARTICIPANTS: Representatives of Canadian healthcare delivery and coordinating organisations that guide the development and/or implementation of person-centred care (PCC) measurement. Representatives from primary care clinics and organisations from the province of Alberta, Canada also participated. METHODS: We conducted a survey with representatives of Canadian healthcare organisations. The survey comprised two sections that: (1) assessed readiness for using PC-QIs, and (2) were based on the Organizational Readiness for Change Assessment tool. We summarised the survey results using descriptive statistics. We then conducted follow-up interviews with organisations representing system and clinical-level perspectives to further explore barriers and facilitators to implementing PC-QIs. The interviews were informed by and analysed using the Consolidated Framework for Implementation Research. RESULTS: Thirty-three Canadian regional healthcare organisations across all 13 provinces/territories participated in the survey. Only 5 of 26 PC-QIs were considered highly feasible to implement for 75% of organisations and included: coordination of care, communication, structures to report performance, engaging patients and caregivers and overall experience. A representative sample of 10 system-level organisations and 11 primary care organisations/clinics participated in the interviews. Key barriers identified were: resources and staff capacity for quality improvement, a shift in focus to COVID-19 and health provider motivation. Facilitators included: prioritisation of PCC measurement, leadership and champion engagement, alignment with ongoing provincial strategic direction and measurement efforts, and the use of technology for data collection, management and reporting. CONCLUSIONS: Despite high interest and policy alignment to use PC-QI 'readiness' to implement them effectively remains a challenge. Organisations need to be supported to collect, use and report PCC data to make the needed improvements that matter to patients.

Immigrant Healthcare Experiences and Impacts During COVID-19: A Cross-Sectional Study in Alberta, Canada.

Primary Health Care is a gateway of healthcare services. The COVID-19 pandemic has modified the process of delivering care. We aimed to assess Albertan's healthcare experiences during the pandemic and compared experiences between Albertans that were born in and outside Canada. A cross-sectional online survey (experiences and impacts of COVID-19) was conducted in October 2020, 16 years, and older Albertans. Descriptive statistics and multivariable logistic regression were performed using STATA. Of 10 175 study participants, 10% were born outside Canada. Demographics were significantly different between the 2 groups (P < .05). Results revealed that Canadian-born were more likely to report worse mental and physical health status (AOR = 1.36; 95% CI: 1.17-1.56), and higher stress, anxiety, and depression during the pandemic (AOR = 1.37; 95% CI: 1.16-1.60) than those born outside Canada. However, Canadian-born reported a trend toward better virtual care experiences (AOR = 1.16; 95% CI: 0.94-1.44). Albertans reported negative health impacts due to delay in care during the pandemic and vaccine hesitancy for COVID-19, which was not significantly difference among the cohorts (P > .05). The study findings can inform primary healthcare providers and policymakers that could be used to develop quality improvement strategies.

Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study.

INTRODUCTION: Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful. The purpose of this study is to evaluate patient engagement processes and the activities of patient partners during and after a paediatric mental healthcare trial. METHODS AND ANALYSIS: Using a mixed-methods study design, we will evaluate patient partners' engagement activities across set time-points during the trial and after trial completion. In this study, the term 'patient partner' is inclusive of two groups of people with lived experience: (1) caregivers (parents, formal/informal caregivers and family), and (2) youth (aged 15-24 years). Engagement will be evaluated using the participant and project questionnaires of the Public and Patient Engagement Evaluation Tool (PPEET), followed sequentially by semi-structured interviews. Quantitative data from the PPEET questionnaire will be analysed and reported using descriptive statistics. Data from open-ended questions from the PPEET questionnaires and semi-structured interviews will be analysed using thematic analysis. ETHICS AND DISSEMINATION: Approval from Athabasca University Research Ethics Board will be obtained for this project. Findings will be disseminated at both academic and public venues whether in-person or online, and using platforms that are caregiver and youth friendly. TRIAL REGISTRATION NUMBER: NCT04902391.

Drivers of paediatric inpatient experience: retrospective analysis of casemix factors for the Alberta Paediatric Inpatient Experience Survey in Alberta, Canada.

OBJECTIVE: In Alberta, the Alberta Paediatric Inpatient Experience Survey (APIES) is used as a proxy-reported measure of paediatric experience. To our knowledge, the influence of casemix factors on patient experience as measured by paediatric patient experience surveys have not been reported within Canadian paediatric samples. In this paper, we sought to determine the patient and respondent factors associated with paediatric inpatient experiences in Alberta, Canada. DESIGN: Retrospective analysis of patient experience survey data. SETTING: Inpatiet acute care hospitals in Alberta, Canada. INTERVENTION AND MAIN OUTCOME MEASURES: Retrospective analyses were conducted using APIES surveys linked with eligible inpatient records (n=6262). Descriptive statistics were reported. χ2 tests were performed to assess distribution of casemix between general and paediatric hospitals. Logistic regression was performed with overall hospital experience as the dependent variable with casemix and hospital variables as independent variables. RESULTS: Casemix characteristics were unevenly distributed between general and paediatric hospitals. Compared with reference categories, older respondents, healthier patients and treatment at paediatric facilities had increased odds of providing most-positive ratings. Increased respondent education was associated with decreased odds of providing most-positive ratings. Likelihood-ratio tests showed that most casemix variables improved model fit, except for respondent relationship to the patient. CONCLUSIONS: To improve reports of paediatric inpatient experience, administrators and providers require reliable and comparable measurement. Both the Child Hospital Consumer Assessment of Healthcare Providers and Systems and other measures of patient and family experience need to consider patient and respondent characteristics when interpreting results. Considered with other research from patient experience in Alberta, we discuss future directions and quality improvement implications.

Development and validation of a social vulnerabilities survey for medical inpatients.

OBJECTIVES: Our objective was to validate a Social Vulnerabilities Survey that was developed to identify patient barriers in the following domains: (1) salience or priority of health; (2) social support; (3) transportation; and (4) finances. DESIGN: Cross-sectional psychometric study.Questions for one domain (health salience) were developed de novo while questions for the other domains were derived from national surveys and/or previously validated questionnaires. We tested construct (ie, convergent and discriminative) validity for these new questions through hypothesis testing of correlations between question responses and patient characteristics. Exploratory factor analysis was conducted to determine structural validity of the survey as a whole. SETTING: Patients admitted to the inpatient internal medicine service at a tertiary care hospital in Calgary, Canada. PARTICIPANTS: A total of 406 patients were included in the study. RESULTS: The mean age of respondents was 55.5 (SD 18.6) years, with the majority being men (55.4%). In feasibility testing of the first 107 patients, the Social Vulnerabilities Survey was felt to be acceptable, comprehensive and met face validity. Hypothesis testing of the health salience questions revealed that the majority of observed correlations were exactly as predicted. Exploratory factor analysis of the global survey revealed the presence of five factors (eigenvalue >1): social support, health salience, drug insurance, transportation barriers and drug costs. All but four questions loaded to these five factors. CONCLUSIONS: The Social Vulnerabilities Survey has face, construct and structural validity. It can be used to measure modifiable social vulnerabilities, such that their effects on health outcomes can be explored and understood.

Co-designing strategies to support patient partners during a scoping review and reflections on the process: a commentary.

BACKGROUND: Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibility than traditionally described by patient participants who are primarily studied. A gap still remains in the understanding of how to engage patients. The objective of this commentary is to describe the involvement of four patient partners who worked with researchers during a scoping review. MAIN BODY: We describe approaches to meaningfully engage patient partners in conducting a scoping review. Patient partners were recruited through existing patient networks. Capacity development in the form of the training was provided to these four patient partners. Engagement strategies were co-designed with them to address potential barriers of involvement and acquiring the necessary skills for the successful completion of this scoping review. CONCLUSION: Involving patients partners early in the project established the foundational relationship so patient partners could contribute to their fullest. We witnessed the success of working alongside patient partners as members of the research team with a clear and mutually agreed upon purpose of the engagement in health research activities and how this seemed to contribute to an effective and rewarding experience for both researcher and patient partner.

Patients have taken on roles as members of research teams, often involved in a wide range of activities, such as members of advisory committees. Despite these important new roles for patients, broadly, researchers are still challenged with identifying opportunities of benefit to all involved. We describe the involvement of four patient partners who worked with researchers to complete a scoping review. We detail the approaches used to support the project and the benefits and challenges we experienced while involving patients in this review. Co-designing engagement approaches assisted in gaining the support and buy-in necessary from patient partners for the successful completion of this scoping review. Involving patients partners early in the project established the foundational relationship for patient partners to contribute to their fullest. We witnessed the success of working alongside patient partners as members of the research team with a clear and mutually agreed upon purpose of the engagement in health research activities and how this seemed to contribute to an effective and rewarding experience for both researchers and patient partners.

Prevalence, clinical characteristics, and outcomes of pediatric COVID-19: A systematic review and meta-analysis.

INTRODUCTION: The novel coronavirus pandemic is an ongoing challenge faced by the public and health care systems around the globe. Majority of information and evidence gathered so far regarding COVID-19 has been derived from data and studies in adult populations. Crucial information regarding the characterization, clinical symptomatology, sequelae, and overall outcomes in the pediatric population is lacking. As such, we aimed to conduct a comprehensive meta-analysis and systematic review to collect and analyze current evidence about COVID-19 in the pediatric population. METHOD: A systematic search and review of scientific literatures was conducted following the PRISMA guidelines using PubMed, Embase, Scopus, Medline, and Google Scholar databases. All relevant studies until June 16, 2020 were included. Studies were reviewed for methodological quality, and random-effects model was used to conduct the primary meta-analysis. I2 value and Egger's test was used to estimate heterogeneity and publication bias respectively. RESULTS: We reviewed 20 eligible studies that included 1810 pediatric patient population (<21 yo) with PCR tested COVID-19 positivity. In pooled data, majority (25 % [CI 18-32], I2 59 %) of overall COVID-19 positive patients fell in the 6-10 yr age group. 13 % ([CI 11-14], I2 78 %) of the patients were asymptomatic, with headache (67 % [CI 60-74], I2 46 %), fever (55 % [CI 52-58], I2 61 %), and cough (45 % [CI 42-49], I2 79 %) accounting for the most prevalent physical signs seen in symptomatic patients. Leukopenia (12 % [CI 9-15], I250 %) and lymphopenia (15 % [CI 13-19], I2 85 %) was common. Elevated Ferritin (26 % [CI 16-40], I2 73 %), Procal (25 % [CI 21-29 %], I2 83 %), and CRP (19 % [CI 16-22 %], I2 74 %) were other laboratory abnormalities commonly observed. Common radiological features were ground-glass opacities (36 % [CI 32-39 %], I2 92 %), normal finding (33 % [CI 30-36 %], I2 81 %), and consolidation. 29 % ([CI 26-33], I2 85 %) of the patient cases was non-severe, whereas only 5 % ([CI 1-8], I2 87 %) was severe. Mortality was observed in 0.3 % ([CI 0.1-0.4], I2 0%) of the overall cases. CONCLUSION: COVID-19 is prevalent across all pediatric age-groups and presents with varying degree of symptomology. However, children have a milder course of the disease with extremely favorable prognosis. Laboratory and radiological features are inconsistent and require further investigations. Additional studies are needed on this topic to corroborate findings and establish evidence-based and consistent characterization of COVID-19 in the pediatric population.

Patient-Reported Experiences in Accessing Primary Healthcare among Immigrant Population in Canada: A Rapid Literature Review.

(1) Background: Immigrants represent around 21.9% of the total population in Canada and encounter multifaceted obstacles in accessing and receiving primary healthcare. This literature review explores patient experiences in primary care from the perspective of immigrants and identifies areas for further research and improvement. (2) Methods: A comprehensive search was performed on PubMed, MEDLINE, Embase, SCOPUS, and Google scholar to identify studies published from 2010 to July 2020. Relevant articles were peer-reviewed, in English language, and reported patient experiences in primary healthcare in Canada. (3) Results: Of the 1566 searched articles, 19 articles were included in this review. Overall, the finding from articles were summarized into four major themes: cultural and linguistic differences; socioeconomic challenges; health system factors; patient-provider relationship. (4) Conclusion: Understanding the gaps to accessing and receiving appropriate healthcare is important to shape policies, enhance the quality of services, and deliver more equitable healthcare services. It is therefore pertinent that primary healthcare providers play an active role in bridging these gaps with strong support from policymakers. Understanding and respecting diversity in culture, language, experiences, and systems is crucial in reducing health inequalities and improving access to quality care in a respectful and responsive manner.

Improving the quality of person-centred healthcare from the patient perspective: development of person-centred quality indicators.

IMPORTANCE: International efforts are being made towards a person-centred care (PCC) model, but there are currently no standardised mechanisms to measure and monitor PCC at a healthcare system level. The use of metrics to measure PCC can help to drive the changes needed to improve the quality of healthcare that is person centred. OBJECTIVE: To develop and validate person-centred care quality indicators (PC-QIs) measuring PCC at a healthcare system level through a synthesis of the evidence and a person-centred consensus approach to ensure the PC-QIs reflect what matters most to people in their care. METHODS: Existing indicators were first identified through a scoping review of the literature and an international environmental scan. Focus group discussions with diverse patients and caregivers and interviews with clinicians and experts in quality improvement allowed us to identify gaps in current measurement of PCC and inform the development of new PC-QIs. A set of identified and newly developed PC-QIs were subsequently refined by Delphi consensus process using a modified RAND/UCLA Appropriateness Method. The international consensus panel consisted of patients, family members, community representatives, clinicians, researchers and healthcare quality experts. RESULTS: From an initial 39 unique evidence-based PC-QIs identified and developed, the consensus process yielded 26 final PC-QIs. These included 7 related to structure, 16 related to process, 2 related to outcome and 1 overall global PC-QI. CONCLUSIONS: The final 26 evidence-based and person-informed PC-QIs can be used to measure and evaluate quality incorporating patient perspectives, empowering jurisdictions to monitor healthcare system performance and evaluate policy and practice related to PCC.

Identifying areas for improvement in paediatric inpatient care using the Child HCAHPS survey.

The Child-Hospital Consumer Assessment of Healthcare Providers and Systems (Child-HCAHPS) survey is a validated measure of paediatric inpatient experience. The study objective was to determine which survey questions were most correlated with respondents' overall rating of care. Knowing which questions are most important may provide valuable insights for developing targeted quality improvement initiatives. METHODS: Within 6 weeks of discharge, 3,389 telephone surveys were completed by parents/guardians of children who were hospitalized for at least 24 hours. The survey was comprised of 66 questions, with responses based on Likert-scales. One survey question asked respondents to rate the overall care that their child received on a scale from 0 (worst care) to 10 (best care). The correlation between the overall rating of care and each survey measure and question was then examined using Spearman correlation coefficients. All survey questions were normalized to a 100-point score (0=worst, 100=best). RESULTS: Questions on provider coordination and nursing care were most correlated with overall experience. Quietness of hospital room (r=0.19, P<0.001), and keeping families informed in the emergency room (r=0.12, P<0.001) showed poor correlation. Correlation with overall experience was strongest for the 'communication with nurses' domain (r=0.46, P<0.001). CONCLUSIONS: To our knowledge, this is the first study which examines the correlation of individual questions of the Child-HCAHPS to overall rating of care within a Canadian context. Our results suggest that our large health care organization may attain initial inpatient experience improvements by focusing upon personnel-based initiatives, rather than physical attributes of our hospitals.

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

OBJECTIVES: The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta. DESIGN: This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research. SETTING: Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada. PARTICIPANTS: A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11). RESULTS: Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases. CONCLUSIONS: In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.

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.

Measuring patient-centred system performance: a scoping review of patient-centred care quality indicators.

OBJECTIVES: The shift to the patient-centred care (PCC) model as a healthcare delivery paradigm calls for systematic measurement and evaluation. In an attempt to develop patient-centred quality indicators (PC-QIs), this study aimed to identify quality indicators that can be used to measure PCC. METHODS: Design: scoping review. DATA SOURCES: studies were identified through searching seven electronic databases and the grey literature. Search terms included quality improvement, quality indicators, healthcare quality and PCC. Eligibility Criteria: articles were included if they mentioned development and/or implementation of PC-QIs. DATA EXTRACTION AND SYNTHESIS: extracted data included study characteristics (country, year of publication and type of study/article), patients' inclusion in the development of indicators and type of patient populations and point of care if applicable (eg, in-patient, out-patient and primary care). RESULTS: A total 184 full-text peer-reviewed articles were assessed for eligibility for inclusion; of these, 9 articles were included in this review. From the non-peer-reviewed literature, eight documents met the criteria for inclusion in this study. This review revealed the heterogeneity describing and defining the nature of PC-QIs. Most PC-QIs were presented as PCC measures and identified as guidelines, surveys or recommendations, and therefore cannot be classified as actual PC-QIs. Out of 502 ways to measure PCC, only 25 were considered to be actual PC-QIs. None of the identified articles implemented the quality indicators in care settings. CONCLUSION: The identification of PC-QIs is a key first step in laying the groundwork to develop evidence-based PC-QIs. Research is needed to continue the development and implementation of PC-QIs for healthcare quality improvement.

How to measure cultural competence when evaluating patient-centred care: a scoping review.

OBJECTIVES: The purpose of this study was to identify patient-centred quality indicators (PC-QI) and measures for measuring cultural competence in healthcare. DESIGN: Scoping review. SETTING: All care settings. SEARCH STRATEGY: A search of CINAHL, EMBASE, MEDLINE, PsycINFO, Social Work Abstracts and SocINDEX, and the grey literature was conducted to identify relevant studies. Studies were included if they reported indicators or measures for cultural competence. We differentiated PC-QIs from measures: PC-QIs were identified as a unit of measurement of the performance of the healthcare system, which reflects what matters to patients and families, and to any individual that is in contact with healthcare services. In contrast, measures evaluate delivery of patient-centred care, in the form of a survey and/or checklist. Data collected included publication year and type, country, ethnocultural groups and mention of quality indicator and/or measures for cultural competence. RESULTS: The search yielded a total of 786 abstracts and sources, of which 16 were included in the review. Twelve out of 16 sources reported measures for cultural competence, for a total of 10 measures. Identified domains from the measures included: physical environment, staff awareness of attitudes and values, diversity training and communication. Two out of 16 sources reported PC-QIs for cultural competence (92 structure and process indicators, and 48 outcome indicators). There was greater representation of structure and process indicators and measures for cultural competence, compared with outcome indicators. CONCLUSION: Monitoring and evaluating patient-centred care for ethnocultural communities allows for improvements to be made in the delivery of culturally competent healthcare. Future research should include development of PC-QIs for measuring cultural competence that also reflect cultural humility, and the involvement of ethnocultural communities in the development and implementation of these indicators.