A Retrospective, Descriptive Study of Dyspnea Management in a Multidisciplinary Interstitial Lung Disease Clinic.

Fibrotic interstitial lung diseases (F-ILDs) have a high symptom burden with progressive dyspnea as a primary feature. Breathlessness is underrecognized and undertreated primarily due to lack of consensus on how to best measure and manage it. Several nonpharmacologic and pharmacologic strategies are published in the literature, however there is a paucity of real-world data describing their systematic implementation.

Singing and Dancing With Neuromuscular Conditions: A Mixed-Methods Study.

The purpose of this study was to assess the safety and meaningfulness of a 15-week recreational dance and singing program for people with neuromuscular conditions. Within a transformative mixed-methods design, pulmonary function tests, plethysmography through wearable technology (Hexoskin vests), individualized neuromuscular quality-of-life assessments (version 2.0), and semistructured interviews were used.

Redesigning interstitial lung disease clinic care through interprofessional collaboration.

Descriptions of how to foster and accomplish interprofessional collaboration (IPC) in practice across different healthcare settings are needed. This paper examines the transformation of a normative interstitial lung disease (ILD) clinic to an IPC delivering person-centric care across an outpatient specialty clinic and the community. It describes how the IPC was started; the actions undertaken to do this; and the processes supporting it within the outpatient clinic, and between it and its community-based partners.

Action plans in idiopathic pulmonary fibrosis: a qualitative study-'I do what I can do'.

Background: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.

Aim: To explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.

Buccal Hydromorphone Syrup for Managing Dyspnea in Idiopathic Pulmonary Fibrosis.

Context: Dyspnea is a highly distressing symptom that characterizes idiopathic pulmonary fibrosis (IPF), a common idiopathic interstitial lung disease (ILD) with a high symptom burden, poor quality of life, and early mortality. Though opioids are mentioned in guidelines for dyspnea management, guidance on how and when to initiate opioids is lacking. Different pharmacologic strategies are needed to address different types of dyspnea (baseline, incident, and crisis).

Early Integrated Palliative Care Bundle Impacts Location of Death in Interstitial Lung Disease: A Pilot Retrospective Study.

Background: Interstitial lung diseases (ILDs) comprise a heterogeneous group of fibrotic, progressive pulmonary diseases characterized by poor end-of-life care and hospital deaths. In 2012, we launched our Multidisciplinary Collaborative (MDC) ILD clinic to deliver integrated palliative approach throughout disease trajectory to improve care. We sought to explore the effects of palliative care and other factors on location of death (LOD) of patients with ILD.

Health Care Costs at the End of Life for Patients with Idiopathic Pulmonary Fibrosis. Evaluation of a Pilot Multidisciplinary Collaborative Interstitial Lung Disease Clinic.

Even though idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012, we implemented a multidisciplinary collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early integrated palliative approach, focusing on early symptom management and advance care planning. To evaluate the differences in resource use and associated costs of end-of-life care between patients with IPF who received early integrated palliative care and patients with IPF who received conventional treatment.

Cardiac Intervention Improves Heart Disease and Clinical Outcomes in Patients With Muscular Dystrophy in a Multidisciplinary Care Setting.

Background Patients with muscular dystrophy (MD) represent a vulnerable patient population with no clearly defined care model in modern-day clinical practice to manage a high burden of heart disease and comorbidities. We demonstrate the effectiveness of cardiac interventions, namely the initiation and optimization of medical and device therapies, as part of a multidisciplinary care approach to improve clinical outcomes in patients with MD. Methods and Results We conducted a prospective cohort study at the Neuromuscular Multidisciplinary clinic following patients with dystrophinopathies, limb-girdle MD, type 1 myotonic dystrophy, and facioscapulohumeral MD.

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences.

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.

Beyond Idiopathic Pulmonary Fibrosis Diagnosis: Multidisciplinary Care With an Early Integrated Palliative Approach Is Associated With a Decrease in Acute Care Utilization and Hospital Deaths.

Context: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable interstitial lung disease with heavy symptom burden and poor quality of life. The last year of life is characterized by increased acute care utilization and hospital deaths. Clinical guidelines recommend early integration of palliative care but are rarely implemented.