Publications

Background

Chronic fatigue syndrome (CFS) remains poorly understood. Although infections are speculated to trigger the syndrome, a specific infectious agent and underlying pathophysiological mechanism remain elusive. In a previous study, we described similar clinical phenotypes in CFS patients and alternatively diagnosed chronic Lyme syndrome (ADCLS) patients—individuals diagnosed with Lyme disease by testing from private Lyme specialty laboratories but who test negative by reference 2-tiered serologic analysis.

Methods

Here, we performed blinded RNA-seq analysis of whole blood collected from 25 adults diagnosed with CFS and 13 ADCLS patients, comparing these cases to 25 matched controls and 11 patients with well-controlled systemic lupus erythematosus (SLE). Samples were collected at patient enrollment and not during acute symptom flares. RNA-seq data were used to study host gene expression, B-cell/T-cell receptor profiles (BCR/TCR), and potential viral infections.

Results

No differentially expressed genes (DEGs) were found to be significant when CFS or ADCLS cases were compared to controls. Forty-two DEGs were found when SLE cases were compared to controls, consistent with activation of interferon signaling pathways associated with SLE disease. BCR/TCR repertoire analysis did not show significant differences between CFS and controls or ADCLS and controls. Finally, viral sequences corresponding to anelloviruses, human pegivirus 1, herpesviruses, and papillomaviruses were detected in RNA-seq data, but proportions were similar (P = .73) across all genus-level taxonomic categories.

Conclusions

Our observations do not support a theory of transcriptionally mediated immune cell dysregulation in CFS and ADCLS, at least outside of periods of acute symptom flares.

CONTEXT

Advance care planning (ACP) is valued by patients and clinicians, yet documenting ACP in an accessible manner is problematic.

OBJECTIVES

In order to understand how providers incorporate electronic health record (EHR) ACP documentation into clinical practice, we interviewed providers in primary care and specialty departments about ACP practices (n = 13) and analyzed EHR data on 358 primary care providers (PCPs) and 79 specialists at a large multispecialty group practice.

METHODS

Structured interviews were conducted with 13 providers with high and low rates of ACP documentation in primary care, oncology, pulmonology, and cardiology departments. The EHR problem list data on Advance Health Care Directives (AHCDs) and Physician Orders for Life-Sustaining Treatment (POLST) were used to calculate ACP documentation rates.

RESULTS

Examining seriously ill patients ≥65 years with no preexisting ACP documentation seen by providers during 2013 to 2014, 88.6% (AHCD) and 91.1% (POLST) of 79 specialists had zero ACP documentations. Of 358 PCPs, 29.1% (AHCD) and 62.3% (POLST) had zero ACP documentations. Interviewed PCPs often believed ACP documentation was beneficial and accessible, while specialists more often did not. Specialists expressed more confusion about documenting ACP, whereas PCPs reported standard clinic workflows. Problems with interoperability between outpatient and inpatient EHR systems and lack of consensus about who should document ACP were sources of variations in practices.

CONCLUSION

Results suggest that providers desire standardized workflows for ACP discussion and documentation. New Medicare reimbursement for ACP and an increasing number of quality metrics for ACP are incentives for health-care systems to address barriers to ACP documentation.

BACKGROUND

Cardiac rehabilitation (CR) is linked to reduced mortality and morbidity, including improvements in cardiorespiratory fitness, psychosocial state, and quality of life in patients with heart failure (HF). However, little is known about CR utilization among patients with HF.

OBJECTIVE

We sought to determine (a) the proportion of patients with HF who participated in CR and (b) patient characteristics associated with participation.

METHODS

A retrospective study was conducted with the use of national data from the Centers for Medicare and Medicaid Services and the Veterans Health Administration. We used primary discharge ICD-9 codes to identify patients hospitalized for HF during 2007-2011 and identified CR participation with the use of current procedure terminology codes from claims data. Multivariate logistic regression was used to identify patient characteristics associated with CR participation.

RESULTS

There were 66,710 veterans and 243,208 Medicare beneficiaries hospitalized for HF and 1554 (2.3%) and 6280 (2.6%), respectively, who attended ≥1 sessions of outpatient CR. Among Medicare beneficiaries, men were more likely than women to participate in CR (3.7% vs 1.8%; P < .001), but there was no gender difference among veterans (2.3% vs 2.8%; P = .40). Characteristics associated with participation in CR in both groups included younger age, white race, and history of ischemic heart disease.

CONCLUSIONS

Very few HF patients participated in CR, with lower rates among older non-white women with a history of depression or other chronic medical conditions. Because Medicare has recently introduced coverage for CR in patients with systolic HF, we must increase efforts to improve CR participation, especially among these vulnerable groups.

BACKGROUND

Celiac disease is a chronic inflammatory condition with wide ranging effects on individual's lives caused by a combination of symptoms and the burden of adhering to a gluten-free diet (GFD).

OBJECTIVES

To further understand patients' experience of celiac disease, the impact it has on health-related quality of life (HRQOL), and to develop a conceptual model describing this impact.

METHODS

Adults with celiac disease on a GFD reporting symptoms within the previous 3 months were included; patients with refractory celiac disease and confounding medical conditions were excluded. A semistructured discussion guide was developed exploring celiac disease symptoms and impact on patients' HRQOL. An experienced interviewer conducted in-depth interviews. The data set was coded and analyzed using thematic analysis to identify concepts, themes, and the inter-relationships between them. Data saturation was monitored and concepts identified formed the basis of the conceptual model.

RESULTS

Twenty-one participants were recruited, and 32 distinct gluten-related symptoms were reported and data saturation was reached. Analysis identified several themes impacting patients' HRQOL: fears and anxiety, day-to-day management of celiac disease, physical functioning, sleep, daily activities, social activities, emotional functioning, and relationships. The conceptual model highlights the main areas of impact and the relationships between concepts.

CONCLUSIONS

Both symptoms and maintaining a GFD have a substantial impact on patient functioning and HRQOL in adults with celiac disease. The conceptual model derived from these data may help to design future patient-reported outcomes as well as interventions to improve the quality of life in an individual with celiac disease.