Co-building a training programme to facilitate patient, family and community partnership on research grants: A patient-oriented research project.

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.

Study protocol for Attachment & Child Health (ATTACHTM) program: promoting vulnerable Children's health at scale.

BACKGROUND: Children's exposure to toxic stress (e.g., parental depression, violence, poverty) predicts developmental and physical health problems resulting in health care system burden. Supporting parents to develop parenting skills can buffer the effects of toxic stress, leading to healthier outcomes for those children. Parenting interventions that focus on promoting parental reflective function (RF), i.e., parents' capacity for insight into their child's and their own thoughts, feelings, and mental states, may understand help reduce societal health inequities stemming from childhood stress exposures. The Attachment and Child Health (ATTACHTM) program has been implemented and tested in seven rapid-cycling pilot studies (n = 64) and found to significantly improve parents' RF in the domains of attachment, parenting quality, immune function, and children's cognitive and motor development. The purpose of the study is to conduct an effectiveness-implementation hybrid (EIH) Type II study of ATTACHTM to assess its impacts in naturalistic, real-world settings delivered by community agencies rather than researchers under more controlled conditions. METHODS: The study is comprised of a quantitative pre/post-test quasi-experimental evaluation of the ATTACHTM program, and a qualitative examination of implementation feasibility using thematic analysis via Normalization Process Theory (NPT). We will work with 100 families and their children (birth to 36-months-old). Study outcomes include: the Parent Child Interaction Teaching Scale to assess parent-child interaction; the Parental Reflective Function and Reflective Function Questionnaires to assess RF; and the Ages and Stages Questionnaire - 3rd edition to examine child development, all administered pre-, post-, and 3-month-delayed post-assessment. Blood samples will be collected pre- and post- assessment to assess immune biomarkers. Further, we will conduct one-on-one interviews with study participants, health and social service providers, and administrators (total n = 60) from each collaborating agency, using NPT to explore perceptions and experiences of intervention uptake, the fidelity assessment tool and e-learning training as well as the benefits, barriers, and challenges to ATTACHTM implementation. DISCUSSION: The proposed study will assess effectiveness and implementation to help understand the delivery of ATTACHTM in community agencies. TRIAL REGISTRATION: Name of registry: https://clinicaltrials.gov/. REGISTRATION NUMBER: NCT04853888 . Date of registration: April 22, 2021.

Patient Experiences with Hospitalization due to Diabetes in Alberta, Canada - A Cohort Study Using Survey and Administrative Data.

OBJECTIVES: Individuals living with diabetes are often hospitalized. Despite this, little is known about their experiences with hospital care. We examined the comprehensive experiences of patients hospitalized due to diabetes in Alberta, Canada, and compared with those hospitalized due to other chronic conditions. METHODS: We conducted a retrospective cohort study which linked survey data with inpatient records. Survey data were collected using the Canadian Patient Experiences Survey - Inpatient Care (CPES-IC) instrument. Results from 37 questions were classified as percent in "top box", which reflects the most positive answer choice. We also examined the association between overall experience and demographic and clinical factors among those living with diabetes. RESULTS: Over a seven-year period, 12,593 surveys (2,288 diabetes, 10,305 other chronic conditions) were obtained. Those hospitalized due to diabetes had lower "top box" scores on 24 questions, higher scores on three questions, and the remaining 10 questions showed no difference between groups. Those hospitalized due to diabetes indicated potential areas for improvement. These included receiving information about their condition and about the admission process, the nighttime quietness of their hospital room, being informed about possible side effects of new medications, and pain control. Overall experience was also shown to vary according to demographic and clinical factors. CONCLUSIONS: We found that individuals who are hospitalized due to diabetes report lower experience scores than those who are hospitalized due to other chronic conditions. Our findings may be used to develop strategies to improve the patient experience among this cohort.

Person-centred quality indicators are associated with unplanned care use following hospital discharge.

OBJECTIVE: Performance indicators are used to evaluate the quality of healthcare services. The majority of these, however, are derived solely from administrative data and rarely incorporate feedback from patients who receive services. Recently, our research team developed person-centred quality indicators (PC-QIs), which were co-created with patients. It is unknown whether these PC-QIs are associated with unplanned healthcare use following discharge from hospital. DESIGN: A retrospective, cross-sectional study. METHODS: Survey responses were obtained from April 2014 to September 2020 using the Canadian Patient Experiences Survey - Inpatient Care instrument. Logistic regression models were used to predict the link between eight PC-QIs and two outcomes; unplanned readmissions within 30 days and emergency department visits within 7 days. RESULTS: A total of 114 129 surveys were included for analysis. 6.0% of respondents (n=6854) were readmitted within 30 days, and 9.9% (n=11 287) visited an emergency department within 7 days of their index discharge. In adjusted models, 'top box' responses for communication between patients and physicians (adjusted OR (aOR)=0.82, 95% CI: 0.77 to 0.88), receiving information about taking medication (aOR=0.86, 95% CI: 0.80 to 0.92) and transition planning at hospital discharge (aOR=0.79, 95% CI: 0.73 to 0.85) were associated with lower odds of emergency department visit.Likewise, 'top box' responses for overall experience (aOR=0.87, 95% CI: 0.82 to 0.93), communication between patients and physicians (aOR=0.73, 95% CI: 0.67 to 0.80) and receiving information about taking medication (aOR=0.90, 95% CI: 0.83 to 0.98), were associated with lower odds of readmission. CONCLUSIONS: This study demonstrates that patient reports of their in-hospital experiences may have value in predicting future healthcare use. In developing the PC-QIs, patients indicated which elements of their hospital care matter most to them, and our results show agreement between subjective and objective measures of care quality. Future research may explore how current readmission prediction models may be augmented by person-reported experiences.

Variation in parental experiences with their child's hospitalization over the COVID-19 pandemic.

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.

Patient-reported experiences and outcomes of virtual care during COVID-19: a systematic review.

INTRODUCTION: The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care is upheld within virtual environments. To address this, the study's objective was to review how virtual care has impacted patient experiences and outcomes during COVID-19, through the use of patient-reported experience and outcome measures (PREMs and PROMs), respectively. METHODS: A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to evaluate patient responsiveness to virtual care during COVID-19. Using an exhaustive search strategy, relevant peer-reviewed articles published between January 2020 and 2022 were pulled from MEDLINE, CINAHL, EMBASE, and PsychInfo databases. Study quality was independently assessed by two reviewers using the Mixed Methods Appraisal Tool. A patient partner was consulted throughout the study to provide feedback and co-conduct the review. RESULTS: After removing duplicates, 6048 articles underwent title and abstract review, from which 644 studies were included in the full-text review stage. Following this, 102 articles were included in the study. Studies were published in 20 different countries, were predominantly cross-sectional, and reported on the delivery of virtual care in specialized adult outpatient settings. This review identified 29 validated PREMs and 43 PROMs. Several advantages to virtual care were identified, with patients citing greater convenience, (such as saving travel time and cost, less waiting experienced to see care providers) and increased protection from viral spread. Some studies also reported challenges patients and caregivers faced with virtual care, including feeling rushed during the virtual care appointment, lack of physical contact or examination presenting barriers, difficulty with communicating symptoms, and technology issues. CONCLUSION: This review provides supportive evidence of virtual care experiences during the COVID-19 pandemic from patient and caregiver perspectives. This research provides a comprehensive overview of what patient-reported measures can be used to record virtual care quality amid and following the pandemic. Further research into healthcare professionals' perspectives would offer a supportive lens toward a strong person-centered healthcare system.

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.

Family-Rated Pediatric Health Status Is Associated With Unplanned Health Services Use.

OBJECTIVE: Self-rated health is a common self-reported health measure associated with morbidity, mortality, and health care use. The objective was to investigate the association of family-rated health status (FRH) in pediatric care with administrative indicators, patient and respondent features, and unplanned health services use. PATIENTS AND METHODS: Data were taken from Child-Hospital Consumer Assessment of Healthcare Providers and Systems surveys collected between 2015 and 2019 in Alberta, Canada and linked with administrative health records. Three analyses were performed: correlation to assess association between administrative indicators of health status and FRH, logistic regression to assess respondent and patient characteristics associated with FRH, and automated logistic regression to assess the association between FRH and unplanned health services use within 90 days of discharge. RESULTS: A total of 6236 linked surveys were analyzed. FRH had small but significant associations with administrative indicators. Models of FRH had better fit with patient and respondent features. Respondent relationship to child, child age, previous hospitalizations, and number of comorbidities were significantly associated with ratings of FRH. Automated models of unplanned services use included FRH as a feature, and poor ratings of health were associated with increased odds of emergency department visits (adjusted odds ratio: 2.15, 95% confidence interval: 1.62-2.85) and readmission (adjusted odds ratio: 2.48, 95% confidence interval: 1.62-2.85). CONCLUSION: FRH is a simple, single-item global rating of health for pediatric populations that provides accessible and useful information about pediatric health care needs. The results of this article serve as a reminder that family members are valuable sources of information that can improve care and potentially prevent unplanned health services use.

How to analyze and link patient experience surveys with administrative data to drive health service improvement - examples from Alberta, Canada.

The ability of hospitals and health systems to learn from those who use its services (i.e., patients and families) is crucial for quality improvement and the delivery of high-quality patient-centered care. To this end, many hospitals and health systems regularly collect survey data from patients and their families, and are engaged in activities to publicly report the results. Despite this, there has been limited research into the experiences of patients and families, and how to improve them. Since 2015, our research team has conducted a variety of studies which have explored patient experience survey data, in isolation, and in linkages with routinely-captured administrative data sets across Alberta; a Canadian province of 4.4 million residents. Via secondary analyses, these studies have shed light upon the drivers of inpatient experience, the specific aspects of care which are most correlated with one's overall experiences, and the association of elements of the patient experience with other measures, such as patient safety indicators and unplanned hospital readmissions. The aim of this paper is to provide an overview of the methods we have used, including further details about the data sets and linkage protocol. The main findings from these papers have been presented for readers and those who wish to conduct their own work in this area.

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.

Adult Experiences with Hospitalization in Alberta, Canada During the COVID-19 Pandemic: A Comparative Cross-Sectional Study.

Little is known about the experiences of those hospitalized during the COVID-19 pandemic in Canada. Our aims were to (a) report on the experiences, (b) compare with historical results, and (c) assess for potential monthly differences of patients hospitalized in the early months of the COVID-19 across Alberta. A random sample of adults was surveyed within 6 weeks of discharge from 93 hospitals, using a modified version of the Canadian Patient Experiences Survey - Inpatient Care (CPES-IC). Discharges from April to September 2020 comprised the "during COVID-19 pandemic" cohort, while April to September 2019 formed the historical one. Results were reported as percent in "top box", indicative of the most positive answer choice. Odds of reporting a "top box" response were calculated while controlling for demographic and clinical features. In total, 23,412 surveys (11,344 during COVID-19, 12,068 historical) were obtained. Those hospitalized during COVID-19 had higher odds of "top box" ratings on 17 of 39 questions examined, and lower odds on 2 questions (information about the admission process, inclusion of family/friends in care decisions). The remaining 20 questions showed no difference between the 2 cohorts. Our results indicate that respondents hospitalized during the early months of the pandemic had experiences that were largely better or comparable to pre-pandemic. This speaks to the dedication and resilience of staff who provided care during challenging circumstances. Our findings may assist in mitigating fears among those who are hesitant to seek medical care during future pandemics or public health emergencies, including subsequent waves of COVID-19.

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.

Categorising patient concerns using natural language processing techniques.

OBJECTIVES: Patient feedback is critical to identify and resolve patient safety and experience issues in healthcare systems. However, large volumes of unstructured text data can pose problems for manual (human) analysis. This study reports the results of using a semiautomated, computational topic-modelling approach to analyse a corpus of patient feedback. METHODS: Patient concerns were received by Alberta Health Services between 2011 and 2018 (n=76 163), regarding 806 care facilities in 163 municipalities, including hospitals, clinics, community care centres and retirement homes, in a province of 4.4 million. Their existing framework requires manual labelling of pre-defined categories. We applied an automated latent Dirichlet allocation (LDA)-based topic modelling algorithm to identify the topics present in these concerns, and thereby produce a framework-free categorisation. RESULTS: The LDA model produced 40 topics which, following manual interpretation by researchers, were reduced to 28 coherent topics. The most frequent topics identified were communication issues causing delays (frequency: 10.58%), community care for elderly patients (8.82%), interactions with nurses (8.80%) and emergency department care (7.52%). Many patient concerns were categorised into multiple topics. Some were more specific versions of categories from the existing framework (eg, communication issues causing delays), while others were novel (eg, smoking in inappropriate settings). DISCUSSION: LDA-generated topics were more nuanced than the manually labelled categories. For example, LDA found that concerns with community care were related to concerns about nursing for seniors, providing opportunities for insight and action. CONCLUSION: Our findings outline the range of concerns patients share in a large health system and demonstrate the usefulness of using LDA to identify categories of patient concerns.

Sex Differences in the Care Experiences of Patients Hospitalized Due to Ischemic Heart Disease in Alberta, Canada.

BACKGROUND: Women with heart disease experience disparities in the diagnosis, treatment, and management of their condition. However, it is unknown whether these sex differences exist with respect to in-hospital patient experience. We examined the comprehensive experience of patients hospitalized due to ischemic heart disease (IHD) across Alberta, Canada, according to sex. METHODS: Patients completed a modified version of the Canadian Patient Experiences Survey-Inpatient Care (CPES-IC) within 6 weeks of discharge. We examined 37 questions, including 33 regarding specific care processes and 4 global rating scales. Survey responses were reported as raw "top-box" percentages, that is, the most-positive answer choice to each question. Odds and corresponding 95% confidence intervals of women reporting a top-box response were then calculated for each question, while controlling for demographic and clinical factors. RESULTS: From April 2014 to March 2020, a total of 5795 surveys (1612 women, 4183 men) were completed. Taking the survey margin of error into account, women had lower top-box percentages on 26 of 37 questions. Similar results were obtained for the adjusted odds of reporting a top-box response. Women did not have a higher percentage of top-box responses on any of the questions studied. CONCLUSIONS: This study is a Canadian first, which stratified the experiences of hospitalized patients living with ischemic heart disease according to sex. Our results highlighted important sex differences. Future research to understand the mechanisms associated with these observed sex differences in patient-reported experiences is warranted.

CONTEXTE: Les femmes atteintes de maladies cardiaques connaissent des disparités en matière de diagnostic, de traitement et de prise en charge de leur maladie. Cependant, on ignore si des différences entre les sexes existent en ce qui concerne l'expérience des patients à l'hôpital. Nous avons examiné l'expérience globale des patients hospitalisés en raison d'une cardiopathie ischémique en Alberta, au Canada, en fonction du sexe. MÉTHODOLOGIE: Les patients ont rempli une version modifiée du Sondage sur les expériences d'hospitalisation des patients canadiens (SEHPC) dans les six semaines suivant leur congé. Nous avons examiné 37 questions, dont 33 concernaient des processus de soins spécifiques, et quatre échelles d'évaluation globale. Les réponses au sondage ont été rapportées sous forme de pourcentages bruts de personnes ayant sélectionné la réponse la plus positive à chaque question. Les rapports de cotes et les intervalles de confiance à 95 % correspondants des femmes ayant sélectionné la réponse la plus positive ont ensuite été calculés pour chaque question, après prise en compte des facteurs démographiques et cliniques. RÉSULTATS: D'avril 2014 à mars 2020, un total de 5 795 sondages (1 612 femmes, 4 183 hommes) ont été remplis. Si l'on tient compte de la marge d'erreur du sondage, la proportion de femmes ayant sélectionné la réponse la plus positive est plus faible pour 26 des 37 questions. Des résultats similaires ont été obtenus pour les rapports de cotes ajustés de la sélection de la réponse la plus positive. Les femmes n'ont eu un pourcentage plus élevé de réponse la plus positive pour aucune des questions étudiées. CONCLUSIONS: Cette étude, pour laquelle on a stratifié par sexe les expériences des patients hospitalisés atteints de cardiopathie ischémique, est une première au Canada. Nos résultats ont mis en évidence d'importantes différences entre les sexes. Des recherches futures sont justifiées pour comprendre les mécanismes associés à ces différences observées entre les sexes dans les expériences signalées par les patients.

The Experience of Parents of Hospitalized Children Living With Medical Complexity.

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.

Patient Reports of Night Noise in Hospitals Are Associated With Unplanned Readmissions Among Older Adults.

OBJECTIVE: Sleep disturbance is a key contributor to posthospital syndrome; a transient period of vulnerability following discharge from hospital. We sought to examine the relationship between patient-reported hospital quietness at night, via a validated survey, and unplanned hospital readmissions among hospitalized seniors (ages 65 and older) in Alberta, Canada. DESIGN: Retrospective, cross-sectional analysis of survey responses, linked with administrative inpatient records. SETTING: Using the Canadian Patient Experiences Survey-Inpatient Care and Discharge Abstract Database, patients aged 65 and older, and living with one or more chronic conditions were identified. PARTICIPANTS: Of all, 25 674 respondents discharged from hospital between April 2014 and December 2017. MAIN OUTCOME MEASURE: All-cause, unplanned readmission within 30 or 90 days (yes vs no). RESULTS: Approximately half (50.5%) of the respondents reported that the area around their room was always quiet at night. Eight (8.1%) percent of respondents (2066) were readmitted within 30 days (2241 total readmissions), while 15.6% (4000) were readmitted within 90 days (5070 total readmissions). When controlling for a variety of demographic and clinical factors, patients not reporting "always" to the survey question regarding hospital quietness at night had slightly greater odds of readmission within 30 (adjusted odds ratio [aOR] = 1.32, 95% confidence interval [CI]: 1.20-1.45) and 90 days (aOR = 1.14, 95% CI: 1.06-1.23). CONCLUSION: Our results demonstrate a clear association between patient-reported hospital quietness at night and subsequent readmission within the first 30 and 90 days following discharge. Efforts to minimize hospital noise, particularly at night, may help promote a restful environment, while reducing readmissions among older patients living with chronic conditions.

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.