Annals of the American Thoracic Society
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Neuroendocrine cell hyperplasia of infancy (NEHI) is a diffuse lung disease which presents in infancy and improves during childhood. Long-term outcomes have not previously been described. In one familial cohort, we have reported that NEHI is associated with a heterozygous variant of NKX2.1/TTF1. ⋯ Although clinical improvement occurs over time, NEHI may result in life-long pulmonary abnormalities in some cases. Further studies are required to better describe the natural history of this disease and would be facilitated by additional delineation of genetic mechanisms to enable improved case identification.
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To understand how well palliative care is provided in the intensive care unit (ICU) and to direct improvements, measurement of the quality of care delivered is requisite. ⋯ Delivering high-quality palliative care in the ICU requires assessing key patient-centered domains. However, assessments from different perspectives do not always agree with technical quality of care as measured through chart-based metrics. We found deficits across seven domains of technical quality that were not correlated with either nurse or family ratings. Despite care gaps, families were generally satisfied with the care delivered. We conclude that each measurement perspective provides an independent view that can guide quality improvement and innovation work as well as subsequent research.
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Multicenter Study
Validation and Refinement of Chronic Lung Allograft Dysfunction Phenotypes in Bilateral and Single Lung Recipients.
The clinical course of chronic lung allograft dysfunction (CLAD) is heterogeneous. Forced vital capacity (FVC) loss at onset, which may suggest a restrictive phenotype, was associated with worse survival for bilateral lung transplant recipients in one previously published single-center study. ⋯ We independently validated the prognostic significance of FVC loss for bilateral lung recipients and demonstrated that this approach to CLAD classification also confers prognostic information for single lung transplant recipients. Improved understanding of these discrete phenotypes is critical to the development of effective therapies.
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Many patients are diagnosed with small pulmonary nodules for which professional societies recommend subsequent imaging surveillance. Adherence to these guidelines involves many steps from both clinicians and patients but has not been well studied. ⋯ Patients and clinicians often do not adhere to nodule follow-up recommendations. Interventions designed to improve communication quality and decrease distress may also improve patient adherence to nodule follow-up recommendations.
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Randomized Controlled Trial Multicenter Study
Palliative Care for Patients Dying in the Intensive Care Unit with Chronic Lung Disease Compared with Metastatic Cancer.
Palliative care has been focused largely on patients with cancer, and yet patients with chronic lung diseases also have high morbidity and mortality. The majority of deaths in intensive care units (ICUs) follow decisions to withhold or withdraw life-sustaining treatments, suggesting that palliative care is critically important in this setting. ⋯ Among patients who die in the ICU, patients with ILD and COPD receive fewer elements of palliative care and have longer lengths of stay than patients with cancer. These findings identify areas for improvement in caring for patients with chronic lung diseases. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).