Ambulatory Care Coordination Data Gathering and Use.

Care coordination is a crucial component of healthcare systems. However, little is known about data needs and uses in ambulatory care coordination practice. Therefore, the purpose of this study was to identify information gathered and used to support care coordination in ambulatory settings. Survey respondents (33) provided their demographics and practice patterns, including use of electronic health records, as well as data gathered and used. Most of the respondents were nurses, and they described varying practice settings and patterns. Although most described at least partial use of electronic health records, two respondents described paper documentation systems. More than 25% of respondents gathered and used most of the 72 data elements, with collection and use often occurring in multiple locations and contexts. This early study demonstrates significant heterogeneity in ambulatory care coordination data usage. Additional research is necessary to identify common data elements to support knowledge development in the context of a learning health system.

Methodological considerations for the design and implementation of a fully longitudinal mixed methods study.

Growing interest is evident in longitudinal mixed methods research, particularly fully longitudinal mixed methods designs in which both quantitative and qualitative data are collected concurrently for the duration of the study. Fully longitudinal mixed methods designs are particularly relevant for research on dynamic phenomena because of their ability to illuminate both quantitative and qualitative dimensions of change in real time as the phenomenon of interest changes. However, these are complex research designs and their data-intense nature makes them potentially burdensome for study participants, challenging for research teams, and costly for funding agencies. Despite growing use, the methodological literature on fully longitudinal mixed methods research is sparse and little guidance is available for researchers considering this approach. We address this gap by describing our experience with the design and implementation of a fully longitudinal mixed methods study of a dynamic phenomenon, namely, family caregiving during cancer treatment. We describe important questions and key decisions confronted while developing the research proposal, proactive strategies for study implementation, and implementation realities encountered while the study was in progress. On the basis of insights gained through real-world experience, we offer three guiding principles for researchers undertaking such a study. First, align the study design with the nature of the dynamics in the phenomenon of interest. Second, plan from the start when and how the integration of the longitudinal quantitative and qualitative data will occur. Third, employ implementation strategies that take into account the practical aspects of repeated contacts with study participants for an extended period.

Nursing Home Workers' Experience During the COVID-19 Pandemic.

PURPOSE: To understand nursing home workers' experience during the coronavirus disease 2019 (COVID-19) pandemic and investigate the prevalence of health-related quality of life, emotional distress, job satisfaction, and the impact of the pandemic. METHOD: The Healthcare Worker Exposure Response and Outcomes (HERO) Registry served as the data source for this descriptive cross-sectional analysis. Recruitment was conducted nationally. Eligible nursing home workers (N = 1,409) enrolled in the study online, self-reported demographic and employment characteristics, and completed electronic surveys. RESULTS: Nursing home workers reported overall good physical health, frequent depressive symptoms, burnout, and a high prevalence of feeling tired, stressed, having trouble sleeping, and feeling worried. Age and race were found to be positively associated with the impact of the pandemic. CONCLUSION: Findings demonstrate the difficulties and challenges nursing home workers faced during the COVID-19 pandemic. Future research needs to evaluate the relationships among nursing home workers' roles, mental health, depressive symptoms, and prevalence of burnout with a larger, more diverse sample. [Research in Gerontological Nursing, 17(3), 131-140.].

Pediatric Gastrointestinal Outcomes During the Post-Acute Phase of COVID-19: Findings from RECOVER Initiative from 29 Hospitals in the US.

Importance: The profile of gastrointestinal (GI) outcomes that may affect children in post-acute and chronic phases of COVID-19 remains unclear. Objective: To investigate the risks of GI symptoms and disorders during the post-acute phase (28 days to 179 days after SARS-CoV-2 infection) and the chronic phase (180 days to 729 days after SARS-CoV-2 infection) in the pediatric population. Design: We used a retrospective cohort design from March 2020 to Sept 2023. Setting: twenty-nine healthcare institutions. Participants: A total of 413,455 patients aged not above 18 with SARS-CoV-2 infection and 1,163,478 patients without SARS-CoV-2 infection. Exposures: Documented SARS-CoV-2 infection, including positive polymerase chain reaction (PCR), serology, or antigen tests for SARS-CoV-2, or diagnoses of COVID-19 and COVID-related conditions. Main Outcomes and Measures: Prespecified GI symptoms and disorders during two intervals: post-acute phase and chronic phase following the documented SARS-CoV-2 infection. The adjusted risk ratio (aRR) was determined using a stratified Poisson regression model, with strata computed based on the propensity score. Results: Our cohort comprised 1,576,933 patients, with females representing 48.0% of the sample. The analysis revealed that children with SARS-CoV-2 infection had an increased risk of developing at least one GI symptom or disorder in both the post-acute (8.64% vs. 6.85%; aRR 1.25, 95% CI 1.24-1.27) and chronic phases (12.60% vs. 9.47%; aRR 1.28, 95% CI 1.26-1.30) compared to uninfected peers. Specifically, the risk of abdominal pain was higher in COVID-19 positive patients during the post-acute phase (2.54% vs. 2.06%; aRR 1.14, 95% CI 1.11-1.17) and chronic phase (4.57% vs. 3.40%; aRR 1.24, 95% CI 1.22-1.27). Conclusions and Relevance: In the post-acute phase or chronic phase of COVID-19, the risk of GI symptoms and disorders was increased for COVID-positive patients in the pediatric population.

Long COVID incidence in adults and children between 2020 and 2023: a real-world data study from the RECOVER Initiative.

Estimates of post-acute sequelae of SARS-CoV-2 infection (PASC) incidence, also known as Long COVID, have varied across studies and changed over time. We estimated PASC incidence among adult and pediatric populations in three nationwide research networks of electronic health records (EHR) participating in the RECOVER Initiative using different classification algorithms (computable phenotypes). Overall, 7% of children and 8.5%-26.4% of adults developed PASC, depending on computable phenotype used. Excess incidence among SARS-CoV-2 patients was 4% in children and ranged from 4-7% among adults, representing a lower-bound incidence estimation based on two control groups - contemporary COVID-19 negative and historical patients (2019). Temporal patterns were consistent across networks, with peaks associated with introduction of new viral variants. Our findings indicate that preventing and mitigating Long COVID remains a public health priority. Examining temporal patterns and risk factors of PASC incidence informs our understanding of etiology and can improve prevention and management.

Post-acute and Chronic Kidney Function Outcomes of COVID-19 in Children and Adolescents: An EHR Cohort Study from the RECOVER Initiative.

We investigated the risks of post-acute and chronic adverse kidney outcomes of SARS-CoV-2 infection in the pediatric population via a retrospective cohort study using data from the RECOVER program. We included 1,864,637 children and adolescents under 21 from 19 children's hospitals and health institutions in the US with at least six months of follow-up time between March 2020 and May 2023. We divided the patients into three strata: patients with pre-existing chronic kidney disease (CKD), patients with acute kidney injury (AKI) during the acute phase (within 28 days) of SARS-CoV-2 infection, and patients without pre-existing CKD or AKI. We defined a set of adverse kidney outcomes for each stratum and examined the outcomes within the post-acute and chronic phases after SARS-CoV-2 infection. In each stratum, compared with the non-infected group, patients with COVID-19 had a higher risk of adverse kidney outcomes. For patients without pre-existing CKD, there were increased risks of CKD stage 2+ (HR 1.20; 95% CI: 1.13-1.28) and CKD stage 3+ (HR 1.35; 95% CI: 1.15-1.59) during the post-acute phase (28 days to 365 days) after SARS-CoV-2 infection. Within the post-acute phase of SARS-CoV-2 infection, children and adolescents with pre-existing CKD and those who experienced AKI were at increased risk of progression to a composite outcome defined by at least 50% decline in estimated glomerular filtration rate (eGFR), eGFR <15 mL/min/1.73m2, End Stage Kidney Disease diagnosis, dialysis, or transplant.

Participatory development of a framework to actively involve people living with dementia and those from their social network, and healthcare professionals in conducting a systematic review: the DECIDE-SR protocol.

BACKGROUND: Systematic reviews summarize and evaluate relevant studies to contribute to evidence-based practice. Internationally, researchers have reached a consensus that the active involvement of the public leads to better research. Despite this agreement, there are many reviews of research concerning healthcare interventions intended to promote the care of people living with dementia and those from their social network (e.g., close contacts, both family and non-family members) primarily involve only healthcare professionals and other experts. Due to the lack of a dementia-sensitive framework to actively involve people living with dementia and those from their social network, and healthcare professionals as co-researchers in systematic reviews, it is important to develop a framework to inform practice. METHODS: For this framework development process, we will recruit four people living with dementia and a total of four people from their social network, and three healthcare professionals working in acute or long-term care settings. We will conduct regular meetings with these groups of the public and healthcare professionals to include them in all stages of the systematic review. We will also identify and develop methods necessary to ensure meaningful involvement. The results will be documented and analyzed for the development of a framework. For the planning and preparation for these meetings, as well as the conduct of the meetings themselves, we will be guided by the principles of the INVOLVE approach. In addition, the ACTIVE framework will be used to guide the degree of involvement and the stage in the review process. DISCUSSION: We assume that our transparent approach to the development of a framework to support the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews will serve as an impetus for and provide guidance to other researchers with the goal of increasing researchers' focus on this topic and facilitating systematic reviews that apply participatory approaches. TRIAL REGISTRATION: Trial registration is unnecessary as no intervention study will be conducted.

Systematic reviews summarize and evaluate studies on a particular topic. They provide information, for example, regarding whether an intervention is beneficial. This type of review is particularly important for healthcare professionals because they can use the results of the review to guide their actions. There is a growing awareness that the public, including people living with dementia and those from their social network (e.g., relatives, friends), need to be actively involved in the process of preparing these reviews when they are concerned with the topic of the reviews. Despite this consensus, it is often the case that only healthcare professionals are involved in such reviews. At present, no framework for the active involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews has been developed. Therefore, we will develop such a framework together in collaboration with a range of members of the public and healthcare professionals. For this purpose, in addition to healthcare professionals, we will involve people living with dementia and those from their social network. Over the course of several meetings, we will engage in discussion with them and identify the stages of the process of conducting a systematic review in which their involvement as members of the researcher team is meaningful. We will furthermore identify the requirements associated with such an active involvement. A written report of these discussions will be produced in collaboration with the group. This will contribute towards the development of a framework for other researchers. The framework will later be made available to the public free of charge to increase awareness of this topic and to contribute towards more frequent, well-organised and meaningful involvement of people living with dementia and those from their social network, and healthcare professionals in systematic reviews.

Community risks for SARS-CoV-2 infection among fully vaccinated US adults by rurality: A retrospective cohort study from the National COVID Cohort Collaborative.

BACKGROUND: While COVID-19 vaccines reduce adverse outcomes, post-vaccination SARS-CoV-2 infection remains problematic. We sought to identify community factors impacting risk for breakthrough infections (BTI) among fully vaccinated persons by rurality. METHODS: We conducted a retrospective cohort study of US adults sampled between January 1 and December 20, 2021, from the National COVID Cohort Collaborative (N3C). Using Kaplan-Meier and Cox-Proportional Hazards models adjusted for demographic differences and comorbid conditions, we assessed impact of rurality, county vaccine hesitancy, and county vaccination rates on risk of BTI over 180 days following two mRNA COVID-19 vaccinations between January 1 and September 21, 2021. Additionally, Cox Proportional Hazards models assessed the risk of infection among adults without documented vaccinations. We secondarily assessed the odds of hospitalization and adverse COVID-19 events based on vaccination status using multivariable logistic regression during the study period. RESULTS: Our study population included 566,128 vaccinated and 1,724,546 adults without documented vaccination. Among vaccinated persons, rurality was associated with an increased risk of BTI (adjusted hazard ratio [aHR] 1.53, 95% confidence interval [CI] 1.42-1.64, for urban-adjacent rural and 1.65, 1.42-1.91, for nonurban-adjacent rural) compared to urban dwellers. Compared to low vaccine-hesitant counties, higher risks of BTI were associated with medium (1.07, 1.02-1.12) and high (1.33, 1.23-1.43) vaccine-hesitant counties. Compared to counties with high vaccination rates, a higher risk of BTI was associated with dwelling in counties with low vaccination rates (1.34, 1.27-1.43) but not medium vaccination rates (1.00, 0.95-1.07). Community factors were also associated with higher odds of SARS-CoV-2 infection among persons without a documented vaccination. Vaccinated persons with SARS-CoV-2 infection during the study period had significantly lower odds of hospitalization and adverse events across all geographic areas and community exposures. CONCLUSIONS: Our findings suggest that community factors are associated with an increased risk of BTI, particularly in rural areas and counties with high vaccine hesitancy. Communities, such as those in rural and disproportionately vaccine hesitant areas, and certain groups at high risk for adverse breakthrough events, including immunosuppressed/compromised persons, should continue to receive public health focus, targeted interventions, and consistent guidance to help manage community spread as vaccination protection wanes.

Use of Comprehensive Participatory Planning and Evaluation in Rural Patient Engagement.

Comprehensive participatory planning and evaluation (CPPE), a model used in community engagement research, has not been applied to patient engagement in research. We describe our methodology and interim results using CPPE in a project focused on improving research engagement of rural and distant patients and stakeholders. Specifically, we describe our development of a causal map and the subsequent use of the map to guide patient and stakeholder-driven evaluation.

Participatory needs assessment and action planning for a clinical and translational research network.

The goal of this study was to assess the utility of participatory needs assessment processes for continuous improvement of developing clinical and translational research (CTR) networks. Our approach expanded on evaluation strategies for CTR networks, centers, and institutes, which often survey stakeholders to identify infrastructure or resource needs, using the case example of the Great Plains IDeA-CTR Network. Our 4-stage approach (i.e., pre-assessment, data collection, implementation of needs assessment derived actions, monitoring of action plan) included a member survey (n = 357) and five subsequent small group sessions (n = 75 participants) to better characterize needs identified in the survey and to provide actionable recommendations. This participatory, mixed-methods needs assessment and strategic action planning process yielded 11 inter-related recommendations. These recommendations were presented to the CTR steering committee as inputs to develop detailed, prioritized action plans. Preliminary evaluation shows progress towards improved program capacity and effectiveness of the network to respond to member needs. The participatory, mixed-methods needs assessment and strategic planning process allowed a wide range of stakeholders to contribute to the development of actionable recommendations for network improvement, in line with the principles of team science.

Rationale and Design of the Aspirin Dosing-A Patient-Centric Trial Assessing Benefits and Long-term Effectiveness (ADAPTABLE) Trial.

Importance: Determining the right dosage of aspirin for the secondary prevention treatment of atherosclerotic cardiovascular disease (ASCVD) remains an unanswered and critical question. Objective: To report the rationale and design for a randomized clinical trial to determine the optimal dosage of aspirin to be used for secondary prevention of ASCVD, using an innovative research method. Design, Setting, and Participants: This pragmatic, open-label, patient-centered, randomized clinical trial is being conducted in 15 000 patients within the National Patient-Centered Clinical Research Network (PCORnet), a distributed research network of partners including clinical research networks, health plan research networks, and patient-powered research networks across the United States. Patients with established ASCVD treated in routine clinical practice within the network are eligible. Patient recruitment began in April 2016. Enrollment was completed in June 2019. Final follow-up is expected to be completed by June 2020. Interventions: Participants are randomized on a web platform in a 1:1 fashion to either 81 mg or 325 mg of aspirin daily. Main Outcomes and Measures: The primary efficacy end point is the composite of all-cause mortality, hospitalization for nonfatal myocardial infarction, or hospitalization for a nonfatal stroke. The primary safety end point is hospitalization for major bleeding associated with a blood-product transfusion. End points are captured through regular queries of the health systems' common data model within the structure of PCORnet's distributed data environment. Conclusions and Relevance: As a pragmatic study and the first interventional trial conducted within the PCORnet electronic data infrastructure, this trial is testing several unique and innovative operational approaches that have the potential to disrupt and transform the conduct of future patient-centered randomized clinical trials by evaluating treatments integrated in clinical practice while at the same time determining the optimal dosage of aspirin for secondary prevention of ASCVD. Trial Registration: ClinicalTrials.gov Identifier: NCT02697916.

Nursing home research: the first International Association of Gerontology and Geriatrics (IAGG) research conference.

The International Association of Gerontology and Geriatrics held its first conference on nursing home research in St Louis, MO, in November 2013. This article provides a summary of the presentations.

Care transitions: integrating transition theory and complexity science concepts.

Care transitions, defined as hospital discharge or movement from one health care setting to another, are currently a major concern of health care providers and policy makers. Extensive empirical research has been conducted on care transitions, but the theoretical foundations are rarely made explicit. We propose that integrating concepts on complex adaptive systems from complexity science with classic theory on transitions in nursing provides a powerful new lens through which to study care transitions and improve transition outcomes. We summarize concepts from both theoretical approaches, propose an expanded model of transitions, and apply the model to the transition from hospital to home.

Circadian rhythms, symptoms, physical functioning, and body mass index in breast cancer survivors.

INTRODUCTION: Research has been limited in circadian activity rhythms and their relationship with health status in early-stage breast cancer survivors. Maintaining strong circadian parameters may reduce symptoms and improve physical functioning and disease-free survival. METHODS: This is a descriptive, correlational, secondary analysis of data from a randomized controlled trial collected 1 year after the first chemotherapy treatment; n = 156 cases with 7 days of wrist actigraph data of six circadian activity rhythm parameters; measures of function, fatigue, sleep, and anxiety/depression; and demographic/medical data including body mass index (BMI). RESULTS: In the total sample and three BMI categories, acrophase was the only circadian parameter that reached means established in healthy adults. In the total sample, phase-delayed acrophase was associated with higher depression (r = 0.180, p = 0.025) and lower morning energy (r = -0.194, p = 0.016) and trended for higher fatigue (r = 0.153, p = 0.057). Lower morning energy was also associated with a lower circadian quotient (r = 0.158, p = 0.05). As BMI increased, weaker circadian parameters were recorded consistently. When compared with women in normal BMI categories, obese women's amplitude and 24-h autocorrelation coefficient were significantly weaker (p = 0.011-0.015). In obese women, phase-delayed acrophase was correlated with higher fatigue and anxiety and with lower morning energy and physical functioning. DISCUSSION/CONCLUSIONS: Amplitude and 24-h autocorrelation parameters were significantly weaker, and phase-delayed acrophase was linked to several more intense symptoms and lower physical functioning in obese women. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians need to target high-risk women with phase-delayed rhythms, higher symptoms, and lower physical functioning for intervention.