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Engaging patients in research is encouraged. Yet, few qualitative research studies measure the impact of patient engagement (PE) at each research stage and from the point of view of all stakeholders. We studied two project groups to fill this research gap. Patient research partners (PRPs), researchers, and clinicians comprised each group. The two groups had the same objective to design and conduct a qualitative research project. We measured PE using three PE evaluation tools. All project group members were asked to complete the tools at three time points in the study. PRPs influenced and impacted many aspects of their project including the design, process, and approach of the qualitative research.

Background The Palliative Care Early and Systematic (PaCES) program implemented an early palliative care pathway for advanced colorectal cancer patients in January 2019, to increase specialist palliative care consultation and palliative homecare referrals more than three months before death. This study aimed to understand the experience of patients with advanced colorectal cancer and family caregivers who received early palliative care supports from a specialist palliative care nurse and compared those experiences with participants who experienced standard oncology care prior to implementation of early palliative care.Methods This was a qualitative and patient-oriented study. We conducted semi-structured telephone interviews with two cohorts of patients with advanced colorectal cancer before and after implementation of an early palliative care pathway. We conducted a thematic analysis of the transcripts guided by a Person-Centred Care Framework.Results Seven patients living with advanced colorectal cancer and five family caregivers who received early palliative care supports expressed that visits from their early palliative care nurse was helpful, improved their understanding of palliative care, and improved their care. Four main themes shaped their experience of early palliative care: care coordination, perception of palliative care & advance care planning, coping with advanced cancer, and patient and family engagement. These findings were compared with experiences of 15 patients and seven caregivers prior to pathway implementation.Conclusion An early palliative care pathway can improve advanced cancer care, and improve understanding and acceptance of early palliative care. This work was conducted in the context of colorectal cancer but may have relevance for the care of other advanced cancers.

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.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.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).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.

AbstractRATIONALE: Quality indicators have been published for the management of sleep-disordered breathing, but the extent to which quality of care is measured by Canadian sleep centers is unknown.OBJECTIVEThe objective of this study is to characterize the measurement of healthcare quality as reported by Canadian sleep centers.METHODSWe performed a national online survey of Canadian sleep centers. Surveys were distributed by Canadian respiratory and sleep specialty societies. Respondents reporting formal quality measurement were contacted to complete telephone interviews that characterized the process through which quality was assessed. Questions explored the indicators used, the process by which quality data was collected and reported and barriers and facilitators to effective quality measurement. Quality indicators were categorized based on the aspect of clinical care being evaluated and classified using the Institute of Medicine’s (IOM) quality dimensions (safe, effective, patient-centered, timely, efficient, equitable) and Donabedian’s structure-process-outcome framework.MEASUREMENTS AND MAIN RESULTS: Thirty-four survey responses were received, of which 20 sleep centers reported formal quality measurement. Interviews with 19 of these centers identified 61 indicators that were classified into 11 unique categories. The IOM dimensions of patient-centeredness, effectiveness and timeliness were most common while no centers evaluated equity and only one center measured efficiency. All centers used process measures, while most used outcome measures and only one used a structural quality measure.CONCLUSIONSAmong Canadian sleep centers that report formally assessing healthcare quality, measurement was highly variable. These findings highlight the need to identify and mitigate barriers to quality measurement to improve sleep-disordered breathing care.

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.

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.

The Canadian Patient Experience Survey—Inpatient Care is a validated measure for adult inpatient experience. Linking surveys with administrative data can examine the experience of patients in specific demographic or clinical groups.

East African (EA) women are a subpopulation who are at very high risk for gestational diabetes (GDM) and poor obstetric outcomes, but little is known about the care experiences of this understudied group. The objective of this study was to document the impact of a diagnosis of GDM and the perceptions of diabetes care among EA immigrant women.

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Objective: To determine which individual patient experience questions and domains were most correlated with overall inpatient hospital experience.Methods: Within 42 days of discharge, 27 639 patients completed a telephone survey based upon the Hospital-Consumer Assessment of Healthcare Systems and Processes instrument. Patients rated their overall experience on a scale of 0 (worst care) to 10 (best care). Correlation coefficients were calculated to assess the relationships between individual survey questions and domains with overall experience.Results: Questions on provider coordination and nursing care were most correlated with overall experience. Hospital cleanliness, quietness, and discharge information questions showed poor correlation. Correlation with overall experience was strongest for the “communication with nurses” domain.Conclusions: Our individual question results are novel, while the domain-based findings replicate those of US-based providers, results which had not yet been reported in the Canadian context—one with universal health care coverage. 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.

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.