Behaviors in Advance Care Planning and ACtions Survey (BACPACS): development and validation part 1.

BACKGROUND: Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). METHODS: We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. RESULTS: Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24-38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. CONCLUSIONS: Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool.

Changes in presentation, presenting severity and disposition among patients accessing emergency services during the first months of the COVID-19 pandemic in Calgary, Alberta: a descriptive study.

BACKGROUND: The COVID-19 pandemic has resulted in unique pressures on the emergency services system. This study describes changes in the presentation, presenting severity and disposition of patients accessing emergency services in Calgary, Alberta, during the first wave of the pandemic. METHODS: In this descriptive study, we constructed a population cohort of all patients who accessed emergency services by calling emergency medical services (EMS) (ambulance service that provides prehospital treatment and transport to medical facilities) or presenting directly to an emergency department (4 adult and 1 pediatric) or 2 urgent care centres in Calgary during the exposure period (December 2019 to June 2020) compared to 2 historical control periods (December to June, 2017-2018 and 2018-2019) combined. Outcomes included frequency of presentation, system flow indicators, patient severity, disposition and mortality. We used a locally estimated scatterplot smoothing function to visualize trends. We described differences at the maximum and minimum point of the exposure period compared to the control period. RESULTS: A total of 1 127 014 patient encounters were included. Compared to the control period, there was a 61% increase in the number of patients accessing EMS and a 35% decrease in the number of those presenting to an adult emergency department or urgent care centre in the COVID-19 period. The proportion of EMS calls for the highest-priority patients remained stable, whereas the proportion of patients presenting to an emergency department or urgent care centre with the highest-priority triage classification increased transiently by 0.9 percentage points (increase of 89%). A smaller proportion of patients were transported by EMS (decrease of 21%), and a greater proportion of emergency department patients were admitted to hospital (increase of 25%). After the first case was reported, the mortality rate among EMS patients increased by 265% (3.4 v. 12.4 per 1000 patient encounters). INTERPRETATION: The first wave of the COVID-19 pandemic was associated with substantial changes in the frequency and disposition of patients accessing emergency services. Further research examining the mechanism of these observations is important for mitigating the impact of future pandemics.

Listening to Patients' Own Goals: A Key to Goals of Care Decisions in Cardiac Care.

Cardiology spans the spectrum of patient care from the stable outpatient to acute preterminal inpatient. This article provides a narrative account of challenges, learnings, and experiences that we have used as a means to reflect on our own goals of care (GOC) conversations. We detail experiential and evidence-based insights on identifying and overcoming common GOC discussion barriers and building frameworks for effectively addressing patient interests and values through the course of medical care. Existing practices around advance care planning result in GOC discussions being postponed in favour of task-focused medical care and physicians avoiding these discussions out of a perceived lack of time. Physicians struggle to be flexible with existing care plans and in an effort to respect patient autonomy sometimes inappropriately relegate care decisions solely onto patients and families. Instead, we suggest conceiving of the GOC process as involving multiple conversations, taking time to get to know a patient and their personal priorities, sharing a patient's expected medical course when having GOC discussions, admitting prognostic uncertainty when it exists, giving patients and families the space to adjust to these discussions and remaining flexible with plans as a patient's health course fluctuates. Furthermore, our approach stresses being decisive and proactive in providing GOC recommendations when properly equipped to do so and enables recognition and recourse for patient-physician goal misalignment. In conclusion, we stress the importance of advising a treatment course that is responsive to patient considerations via practical communication strategies.

Influence of clinical context on interpretation and use of an advance care planning policy: a qualitative study.

BACKGROUND: Advance care planning is a process through which people share their values, goals and preferences regarding future medical treatments with the purpose of aligning care received with patient wishes. The objective of this study was to explore perspectives from patients and clinicians in 4 clinical settings to understand how context influences interpretation and application of advance care planning processes. METHODS: This study used a qualitative interpretive descriptive design. Patient and clinician participants were recruited across 4 clinical outpatient settings (cancer, heart failure, renal failure and supportive living) in Calgary and Edmonton. Data were collected between 2014 and 2015 by means of recorded one-on-one semistructured interviews. We analyzed the data using thematic analysis in 2016-2017. RESULTS: Thirty-four patients and 34 clinicians participated in interviews. Themes common to all 4 contexts were lack of shared understanding between patients and clinicians, and a lack of consistent clinical process related to advance care planning. Advance care planning understanding and process varied substantially between contexts. This variation seemed to be driven by differences in perceptions around disease burden and the nature of the physician-patient relationship. INTERPRETATION: Provision of a system-wide policy and procedural framework alone was not found to be sufficient to form a standardized approach to advance care planning, as considerable variability existed in advance care planning process between and within clinical settings. Quality-improvement methods that consider local processes, gaps and barriers can help in developing a consistent, comprehensive process.

Developing a case definition for type 1 diabetes mellitus in a primary care electronic medical record database: an exploratory study.

BACKGROUND: Identifying cases of disease in primary care electronic medical records (EMRs) is important for surveillance, research, quality improvement and clinical care. We aimed to develop and validate a case definition for type 1 diabetes mellitus using EMRs. METHODS: For this exploratory study, we used EMR data from the Southern Alberta Primary Care Network within the Canadian Primary Care Sentinel Surveillance Network (CPCSSN), for the period 2008 to 2016. For patients identified as having diabetes mellitus according to the existing CPCSSN case definition, we asked family physicians to confirm the diabetes subtype, to create the reference standard. We used 3 decision-tree classification algorithms and least absolute shrinkage and selection operator logistic regression to identify variables that correctly distinguished between type 1 and type 2 diabetes cases. RESULTS: We identified a total of 1309 people with type 1 or type 2 diabetes, 110 of whom were confirmed by their physicians as having type 1 diabetes. Two machine learning algorithms were useful in identifying these cases in the EMRs. The first algorithm used "type 1" text words or age less than 22 years at time of initial diabetes diagnosis; this algorithm had sensitivity 42.7% (95% confidence interval [CI] 33.5%-52.5%), specificity 99.3% (95% CI 98.6%-99.7%), positive predictive value 85.5% (95% CI 72.8%-93.1%) and negative predictive value 94.9% (95% CI 93.5%-96.1%). The second algorithm used a combination of free-text terms, insulin prescriptions and age; it had sensitivity 87.3% (95% CI 79.2%-92.6%), specificity 85.4% (95% CI 83.2%-87.3%), positive predictive value 35.6% (95% CI 29.9%-41.6%) and negative predictive value 98.6% (95% CI 97.7%-99.2%). INTERPRETATION: We used machine learning to develop and validate 2 case definitions that achieve different goals in distinguishing between type 1 and type 2 diabetes in CPCSSN data. Further validation and testing with a larger and more diverse sample are recommended.

Characterizing Readiness for Advance Care Planning From the Perspective of Residents, Families, and Clinicians: An Interpretive Descriptive Study in Supportive Living.

Background and Objectives: Advance care planning (ACP) involves reflection on health care preferences and communication of the person's wishes in case of future incapacity. ACP is particularly pertinent in supportive living (SL) as residents are at high risk of cognitive decline and changes in health status, but the readiness of residents, families, and health care practitioners to engage in ACP discussions is not known. The purpose of this study was to explore the readiness among these stakeholders and the factors that influence the degree of readiness. Research Design and Methods: Twenty-seven participants (10 residents, 8 family members, 9 health care practitioners) affiliated with 4 SL facilities in Calgary, AB, Canada took part in semistructured, one-on-one interviews. An interpretive descriptive approach was utilized to generate clinically relevant findings. Results: Variability in the conceptualization of ACP, including confusion regarding terminology, emerged as a major theme. Themes that influenced readiness for engagement in ACP discussions included the influence of prior experience for residents and family members, perception of treatment goals, and understanding of roles in the process between the groups. Discussion and Implications: Recommendations for clinicians include clarifying ACP concepts for themselves and residents, shifting focus toward an elucidation of values and preferences rather than on documentation, greater clarity about the roles of the various stakeholders, and recognizing the importance of prior experience for residents and family members. These findings can be used to contribute to the understanding of ACP engagement in SL and inform an approach to engaging in meaningful discussions about ACP.

Seniors' perspectives on care: a case study of the Alex Seniors health clinic, Calgary.

BACKGROUND: Primary care initiatives face an imperative to not only reduce barriers to care for their patients but also to uniquely accommodate the complex needs of at-risk patient populations. Patient-centered multidisciplinary care team models for primary care, like the Alex Seniors Clinic, are one approach for providing comprehensive care for marginalized seniors. The purpose of this qualitative study was to explore patient perspectives on the responsiveness of the Alex Seniors Clinic to their stated health needs. RESULTS: Themes reflected participants' perspectives on factors impacting their health needs as vulnerable seniors as well as on the measures that the Alex Seniors Clinic has taken to meet those needs. Factors impacting health included: the nature of their relationships to the physical environment in which they lived, the nature of the relationships they had to others in that environment, and independence and autonomy. Participants identified accessibility, respect and support, and advocacy as the ways in which the clinic was working to address those health needs. CONCLUSIONS: While respect and support, as well as advocacy, effectively addressed some patient needs, participants felt that accessibility problems continue to be health-related barriers for clinic patients. This may be due to the fact that issues of accessibility reflect larger community and social problems. Nevertheless, it is only through engaging the patient community for input on clinic approaches that an understanding can be gained of how closely a clinic's care goals are currently aligning with patient perspectives of the care and services they receive.