Complexity and Challenges of the Clinical Diagnosis and Management of Long COVID.

Importance: There is increasing recognition of the long-term health effects of SARS-CoV-2 infection (sometimes called long COVID). However, little is yet known about the clinical diagnosis and management of long COVID within health systems. Objective: To describe dominant themes pertaining to the clinical diagnosis and management of long COVID in the electronic health records (EHRs) of patients with a diagnostic code for this condition (International Statistical Classification of Diseases and Related Health Problems, Tenth Revision [ICD-10] code U09.9). Design, Setting, and Participants: This qualitative analysis used data from EHRs of a national random sample of 200 patients receiving care in the Department of Veterans Affairs (VA) with documentation of a positive result on a polymerase chain reaction (PCR) test for SARS-CoV-2 between February 27, 2020, and December 31, 2021, and an ICD-10 diagnostic code for long COVID between October 1, 2021, when the code was implemented, and March 1, 2022. Data were analyzed from February 5 to May 31, 2022. Main Outcomes and Measures: A text word search and qualitative analysis of patients' VA-wide EHRs was performed to identify dominant themes pertaining to the clinical diagnosis and management of long COVID. Results: In this qualitative analysis of documentation in the VA-wide EHR, the mean (SD) age of the 200 sampled patients at the time of their first positive PCR test result for SARS-CoV-2 in VA records was 60 (14.5) years. The sample included 173 (86.5%) men; 45 individuals (22.5%) were identified as Black and 136 individuals (68.0%) were identified as White. In qualitative analysis of documentation pertaining to long COVID in patients' EHRs 2 dominant themes were identified: (1) clinical uncertainty, in that it was often unclear whether particular symptoms could be attributed to long COVID, given the medical complexity and functional limitations of many patients and absence of specific markers for this condition, which could lead to ongoing monitoring, diagnostic testing, and specialist referral; and (2) care fragmentation, describing how post-COVID-19 care processes were often siloed from and poorly coordinated with other aspects of care and could be burdensome to patients. Conclusions and Relevance: This qualitative study of documentation in the VA EHR highlights the complexity of diagnosing long COVID in clinical settings and the challenges of caring for patients who have or are suspected of having this condition.

Implications of Cross-System Use Among US Veterans With Advanced Kidney Disease in the Era of the MISSION Act: A Qualitative Study of Health Care Records.

Importance: Since 2014, when Congress passed the Veterans Access Choice and Accountability (Choice) Act (replaced in 2018 with the more comprehensive Maintaining Internal Systems and Strengthening Integrated Outside Networks [MISSION] Act), the Department of Veterans Affairs (VA) has been paying for US veterans to receive increasing amounts of care in the private sector (non-VA care or VA community care). However, little is known about the implications of these legislative changes for the VA system. Objective: To describe the implications for the VA system of recent increases in VA-financed non-VA care. Design, Setting, and Participants: This qualitative study was a thematic analysis of documentation in the electronic health records (EHRs) of a random sample of US veterans with advanced kidney disease between June 6, 2019, and February 5, 2021. Exposures: Mentions of community care in participant EHRs. Main Outcomes and Measures: Dominant themes pertaining to VA-financed non-VA care. Results: Among 1000 study participants, the mean (SD) age was 73.8 (11.4) years, and 957 participants (95.7%) were male. Three interrelated themes pertaining to VA-financed non-VA care emerged from qualitative analysis of documentation in cohort member EHRs: (1) VA as mothership, which describes extensive care coordination by VA staff members and clinicians to facilitate care outside the VA and the tendency of veterans and their non-VA clinicians to rely on the VA to fill gaps in this care; (2) hidden work of veterans, which describes the efforts of veterans and their family members to navigate the referral process, and to serve as intermediaries between VA and non-VA clinicians; and (3) strain on the VA system, which describes a challenging referral process and the ways in which cross-system care has stretched the traditional roles of VA staff and clinicians and interfered with VA care processes. Conclusions and Relevance: The findings of this qualitative study describing VA-financed non-VA care for veterans with advanced kidney disease spotlight the substantial challenges of cross-system use and the strain placed on the VA system, VA staff and clinicians, and veterans and their families in recent years. These difficult-to-measure consequences of cross-system care should be considered when budgeting, evaluating, and planning the provision of VA-financed non-VA care in the private sector.

Care Practices for Patients With Advanced Kidney Disease Who Forgo Maintenance Dialysis.

Importance: Although maintenance dialysis is a treatment choice with potential benefits and harms, little is known about care practices for patients with advanced chronic kidney disease who forgo this treatment. Objective: To describe how decisions not to start dialysis unfold in the clinical setting. Design, Setting, and Participants: A qualitative study was performed of documentation in the electronic medical records of 851 adults receiving care from the US Veterans Health Administration between January 1, 2000, and October 1, 2011, who had chosen not to start dialysis. Qualitative analysis was performed between March 1, 2017, and April 1, 2018. Main Outcomes and Measures: Dominant themes that emerged from clinician documentation of clinical events and health care interactions between patients, family members, and clinicians relevant to the decision to forgo dialysis. Results: In the cohort of 851 patients (842 men and 9 women; mean [SD] age, 75.0 [10.3] years), 567 (66.6%) were white. Three major dynamics relevant to understanding how decisions to forgo dialysis unfolded were identified. The first dynamic was that of dialysis as the norm: when patients expressed a desire to forgo dialysis, it was unusual for clinicians to readily accept patients' decisions. Clinicians tended to repeatedly question this preference over time, deliberated about patients' competency to make this decision, used a variety of strategies to encourage patients to initiate dialysis, and prepared for patients to change their minds and start dialysis. The second dynamic arose when patients were not candidates for dialysis: clinicians viewed particular patients as not candidates or appropriate for dialysis, usually on the basis of specific characteristics and/or expected prognosis, rather than after consideration of patients' goals and values. When clinicians decided patients were not candidates for dialysis, there seemed to be little room for uncertainty in these decisions. The third dynamic occurred when clinicians believed they had little to offer patients beyond dialysis: when it was clear that patients would not be starting dialysis, nephrologists often signed off from their care and had few recommendations other than referral to hospice care. Conclusions and Relevance: These findings describe an all-or-nothing approach to caring for patients with advanced chronic kidney disease in which initiation of dialysis served as a powerful default option with few perceived alternatives. Stronger efforts are needed to develop a more patient-centered approach to caring for patients with advanced chronic kidney disease that is capable of proactively supporting those who do not wish to start dialysis.

Decisions about Renal Replacement Therapy in Patients with Advanced Kidney Disease in the US Department of Veterans Affairs, 2000-2011.

BACKGROUND AND OBJECTIVES: It is not known what proportion of United States patients with advanced CKD go on to receive RRT. In other developed countries, receipt of RRT is highly age dependent and the exception rather than the rule at older ages. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We conducted a retrospective study of a national cohort of 28,568 adults who were receiving care within the US Department of Veteran Affairs and had a sustained eGFR <15 ml/min per 1.73 m2 between January 1, 2000 to December 31, 2009. We used linked administrative data from the US Renal Data System, US Department of Veteran Affairs, and Medicare to identify cohort members who received RRT during follow-up through October 1, 2011 (n=19,165). For a random 25% sample of the remaining 9403 patients, we performed an in-depth review of their VA-wide electronic medical records to determine the treatment status of their CKD. RESULTS: Two thirds (67.1%) of cohort members received RRT on the basis of administrative data. On the basis of the results of chart review, we estimate that an additional 7.5% (95% confidence interval, 7.2% to 7.8%) of cohort members had, in fact, received dialysis, that 10.9% (95% confidence interval, 10.6% to 11.3%) were preparing for and/or discussing dialysis but had not started dialysis at most recent follow-up, and that a decision had been made not to pursue dialysis in 14.5% (95% confidence interval, 14.1% to 14.9%). The percentage of cohort members who received or were preparing to receive RRT ranged from 96.2% (95% confidence interval, 94.4% to 97.4%) for those <45 years old to 53.3% (95% confidence interval, 50.7% to 55.9%) for those aged ≥85 years old. Results were similar after stratification by tertile of Gagne comorbidity score. CONCLUSIONS: In this large United States cohort of patients with advanced CKD, the majority received or were preparing to receive RRT. This was true even among the oldest patients with the highest burden of comorbidity.

The Feasibility of Using Large-Scale Text Mining to Detect Adverse Childhood Experiences in a VA-Treated Population.

Free text in electronic health records resists large-scale analysis. Text records facts of interest not found in encoded data, and text mining enables their retrieval and quantification. The U.S. Department of Veterans Affairs (VA) clinical data repository affords an opportunity to apply text-mining methodology to study clinical questions in large populations. To assess the feasibility of text mining, investigation of the relationship between exposure to adverse childhood experiences (ACEs) and recorded diagnoses was conducted among all VA-treated Gulf war veterans, utilizing all progress notes recorded from 2000-2011. Text processing extracted ACE exposures recorded among 44.7 million clinical notes belonging to 243,973 veterans. The relationship of ACE exposure to adult illnesses was analyzed using logistic regression. Bias considerations were assessed. ACE score was strongly associated with suicide attempts and serious mental disorders (ORs = 1.84 to 1.97), and less so with behaviorally mediated and somatic conditions (ORs = 1.02 to 1.36) per unit. Bias adjustments did not remove persistent associations between ACE score and most illnesses. Text mining to detect ACE exposure in a large population was feasible. Analysis of the relationship between ACE score and adult health conditions yielded patterns of association consistent with prior research.