Creating a provincial post COVID-19 interdisciplinary clinical care network as a learning health system during the pandemic: Integrating clinical care and research.

Introduction: Coronavirus Disease-2019 (COVID-19) affects multiple organ systems in the acute phase and also has long-term sequelae. Research on the long-term impacts of COVID-19 is limited. The Post COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN), conceived in July 2020, is a provincially funded resource that is modelled as a Learning Health System (LHS), focused on those people with persistent symptoms post COVID-19 infection. Methods: The PC-ICCN emerged through collaboration among over 60 clinical specialists, researchers, patients, and health administrators. At the core of the network are the post COVID-19 Recovery Clinics (PCRCs), which provide direct patient care that includes standardized testing and education at regular follow-up intervals for a minimum of 12 months post enrolment. The PC-ICCN patient registry captures data on all COVID-19 patients with confirmed infection, by laboratory testing or epi-linkage, who have been referred to one of five post COVID-19 Recovery Clinics at the time of referral, with data stored in a fully encrypted Oracle-based provincial database. The PC-ICCN has centralized administrative and operational oversight, multi-stakeholder governance, purpose built data collection supported through clinical operations geographically dispersed across the province, and research operations including data analytics. Results: To date, 5364 patients have been referred, with an increasing number and capacity of these clinics, and 2354 people have had at least one clinic visit. Since inception, the PC-ICCN has received over 30 research proposal requests. This is aligned with the goal of creating infrastructure to support a wide variety of research to improve care and outcomes for patients experiencing long-term symptoms following COVID-19 infection. Conclusions: The PC-ICCN is a first-in-kind initiative in British Columbia to enhance knowledge and understanding of the sequelae of COVID-19 infection over time. This provincial initiative serves as a model for other national and international endeavors to enable care as research and research as care.

Paving the Way for Electronic Patient-Centered Measurement in Team-Based Primary Care: Integrated Knowledge Translation Approach.

BACKGROUND: Patient-centered measurement (PCM) aims to improve the overall quality of care through the collection and sharing of patient values, outcomes, and perspectives. However, the use of PCM in care team decisions remains limited. Integrated knowledge translation (IKT) offers a collaborative, adaptive approach to explore best practices for incorporating PCM into primary care practices by involving knowledge users, including patients and providers, in the exploratory process. OBJECTIVE: This study aims to test the feasibility of using patient-generated data in team-based care; describe the use of these data for team-based mental health care; and summarize patient and provider care experiences with PCM. METHODS: We conducted a multi-method exploratory study in a rural team-based primary care clinic using IKT to co-design, implement, and evaluate the use of PCM in team-based mental health care. Care pathways, workflows, and quality improvement activities were adjusted iteratively to improve integration efforts. Patient and provider experiences were evaluated using individual interviews relating to the use of PCM and patient portals in practice. All meeting notes, interview summaries, and emails were analyzed to create a narrative evaluation. RESULTS: During co-design, a care workflow was developed to incorporate electronically collected patient-generated data from the patient portal into the electronic medical record, and customized educational tools and resources were added. During implementation, care pathways and patient workflows for PCM were developed. Patients found portal use easy, educational, and validating, but data entries were not used during care visits. Providers saw the portal as extra work, and the lack of portal and electronic medical record integration was a major barrier. The IKT approach was invaluable for addressing workflow changes and understanding the ongoing barriers to PCM use and quality improvement. CONCLUSIONS: Although the culture toward using PCM is changing, the use of PCM during care has not been successful. Patients felt validated and supported through portal use and could be empowered to bring these data to their visits. Training, modeling, and adaptable PCM methods are required before PCM can be integrated into routine care.

Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis.

Importance: Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. Objective: To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. Design, Setting, and Participants: A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients' knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. Exposures: The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: "My religious or spiritual beliefs are what really lie behind my whole approach to life." Response options were definitely true, tends to be true, tends not to be true, or definitely not true. Main Outcomes and Measurements: Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. Results: A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true, 230 (24.6%) rated it as tends to be true, 137 (14.6%) rated it as tends not to be true, and 135 (14.4%) rated it as definitely not true. Participants for whom these beliefs were more important were more likely to prefer cardiopulmonary resuscitation (estimated probability for definitely true: 69.8% [95% CI, 66.5%-73.2%]; tends to be true: 60.8% [95% CI, 53.4%-68.3%]; tends not to be true: 61.6% [95% CI, 53.6%-69.6%]; and definitely not true: 60.6% [95% CI, 52.5%-68.6%]; P for trend = .003) and mechanical ventilation (estimated probability for definitely true: 42.6% [95% CI, 38.1%-47.0%]; tends to be true: 33.5% [95% CI, 25.9%-41.2%]; tends not to be true: 35.1% [95% CI, 27.2%-42.9%]; and definitely not true: 27.9% [95% CI, 19.6%-36.1%]; P for trend = .002) and to prefer a shared role in decision-making (estimated probability for definitely true: 41.6% [95% CI, 37.7%-45.5%]; tends to be true: 35.4% [95% CI, 29.0%-41.8%]; tends not to be true: 36.0% [95% CI, 26.7%-45.2%]; and definitely not true: 23.8% [95% CI, 17.3%-30.3%]; P for trend = .001) and were less likely to have thought or spoken about stopping dialysis. These participants were no less likely to have engaged in advance care planning, to value relief of pain and discomfort, to prefer to die at home, to have ever thought or spoken about hospice, and to have unmet palliative care needs and had similar prognostic expectations. Conclusions and Relevance: The finding that religious or spiritual beliefs were important to most study participants suggests the value of an integrative approach that addresses these beliefs in caring for people who receive dialysis.

A Randomized Trial Comparing Antibiotics with Appendectomy for Appendicitis.

BACKGROUND: Antibiotic therapy has been proposed as an alternative to surgery for the treatment of appendicitis. METHODS: We conducted a pragmatic, nonblinded, noninferiority, randomized trial comparing antibiotic therapy (10-day course) with appendectomy in patients with appendicitis at 25 U.S. centers. The primary outcome was 30-day health status, as assessed with the European Quality of Life-5 Dimensions (EQ-5D) questionnaire (scores range from 0 to 1, with higher scores indicating better health status; noninferiority margin, 0.05 points). Secondary outcomes included appendectomy in the antibiotics group and complications through 90 days; analyses were prespecified in subgroups defined according to the presence or absence of an appendicolith. RESULTS: In total, 1552 adults (414 with an appendicolith) underwent randomization; 776 were assigned to receive antibiotics (47% of whom were not hospitalized for the index treatment) and 776 to undergo appendectomy (96% of whom underwent a laparoscopic procedure). Antibiotics were noninferior to appendectomy on the basis of 30-day EQ-5D scores (mean difference, 0.01 points; 95% confidence interval [CI], -0.001 to 0.03). In the antibiotics group, 29% had undergone appendectomy by 90 days, including 41% of those with an appendicolith and 25% of those without an appendicolith. Complications were more common in the antibiotics group than in the appendectomy group (8.1 vs. 3.5 per 100 participants; rate ratio, 2.28; 95% CI, 1.30 to 3.98); the higher rate in the antibiotics group could be attributed to those with an appendicolith (20.2 vs. 3.6 per 100 participants; rate ratio, 5.69; 95% CI, 2.11 to 15.38) and not to those without an appendicolith (3.7 vs. 3.5 per 100 participants; rate ratio, 1.05; 95% CI, 0.45 to 2.43). The rate of serious adverse events was 4.0 per 100 participants in the antibiotics group and 3.0 per 100 participants in the appendectomy group (rate ratio, 1.29; 95% CI, 0.67 to 2.50). CONCLUSIONS: For the treatment of appendicitis, antibiotics were noninferior to appendectomy on the basis of results of a standard health-status measure. In the antibiotics group, nearly 3 in 10 participants had undergone appendectomy by 90 days. Participants with an appendicolith were at a higher risk for appendectomy and for complications than those without an appendicolith. (Funded by the Patient-Centered Outcomes Research Institute; CODA ClinicalTrials.gov number, NCT02800785.).