https://digitalcommons.wustl.edu/cgi/viewcontent.cgi?article=10462&context=open_access_pubs

Cystic Fibrosis Foundation consensus guidelines for the care of individuals with advanced cystic fibrosis lung disease.

Idiopathic pulmonary fibrosis and other forms of fibrosing interstitial lung disease (F-ILD) are life-altering conditions that increasingly deprive patients and their caregivers of their quality of...

https://www.atsjournals.org/doi/pdf/10.1164/rccm.201903-0614PP

Comprehensive Supportive Care for Patients with Fibrosing Interstitial Lung Disease

There is increased awareness of palliative care needs in people with chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD.The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the 'Population, Intervention, Comparison, Outcome' (PICO) format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation (GRADE) for assessing the evidence. Four additional questions were addressed narratively. An 'evidence-to-decision' framework was used to formulate recommendations.The following definition of palliative care for people with COPD or ILD was agreed: A holistic and multidisciplinary, person-centred approach aiming to control symptoms, and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers to: consider palliative care when physical, psychological, social, or existential needs are identified through holistic needs assessment; offer palliative care interventions, including support for informal caregivers, in accordance with such needs; offer advance care planning in accordance with preferences; and integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

European Respiratory Society Clinical Practice Guideline: Palliative care for people with chronic obstructive pulmonary disease or interstitial lung disease.

Idiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients’ health-related quality of life (HRQOL). We aimed to evaluate IPF patients’ symptoms and HRQOL in a well-documented clinical cohort during their last two years of life. In April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years. Ninety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p < 0.001). The proportion of patients with MMRC scores ≥3 increased near death. Breathlessness and fatigue were the most severe symptoms. Symptom severity for the following symptoms increased significantly and reached the highest mean scores during the last six months of life (numeric rating scale/standard deviation): breathlessness (7.1/2.8), tiredness (7.0/2.3), dry mouth (6.0/3.0), cough (5.8/2.9), and pain with movement (5.0/3.5). To our knowledge this is the first study demonstrating, that IPF patients experience remarkably low HRQOL already two years before death, especially regarding physical role. In addition, they suffer from severe breathlessness and fatigue. Furthermore, physical, social and emotional wellbeing deteriorate, and symptom burden increases near death. Regular symptom and HRQOL measurements are essential to assess palliative care needs in patients with IPF.

/pdf/marked-deterioration-in-the-quality-of-life-of-patients-with-19p37jiy2r.pdf

Marked deterioration in the quality of life of patients with idiopathic pulmonary fibrosis during the last two years of life

What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures.

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

Early Integrated Palliative Care in a Multidisciplinary Interstitial Lung Disease (ILD) Collaborative Reduces Hospitalizations for Idiopathic Pulmonary Fibrosis (IPF)

Handle everyday research tasks with reliable, citation-backed results

Your personal Research Agent to handle research tasks with citation-backed results

Popular Tasks used by Researchers

How can I help with your research?

Meet SciSpace

Get more enhanced response by uploading the PDFs you want me to reference.

No relevant PDFs in your library

SciSpace is the AI research assistant for academics. Run systematic literature reviews on 280M+ papers, and write papers with cited sources. Trusted by 1M+ students, PhDs & researchers.

SciSpace | AI for Research

Analyze PDFs

Code & Manuscripts

Funding & Grants

Literature & Patents

Medical & Clinical Data

Systematic Review

Visualize & Present

Web & Data

Build a Google Scholar-like website for your research.

Build a website

Create charts and images for your research

Create a Chart

Write a paper for submission to a journal

Draft a manuscript

Patent Search

Design eye-catching scientific posters in minutes.

Scientific Poster Generation

Systematic Literature Review

One task is running at the moment. Your messages will be shown right after.

Drag and drop or click here to browse

Loved by <highlight>1 million+</highlight> researchers

Extract a list of specific topics and their sources from unstructured text

Topics

Compare and analyze relevant papers that matches with your search

Papers

Get insights from PDFs and bookmarked papers from your library

My library

Recent searches

Try searching for:

Catch AI-generated content in scholarly and non-scholarly content

{ai} Detector

Ai Writer

Get PDF Summaries, highlighted text explanations 

Chat with PDF

Effortlessly create in-text citations and bibliographies in APA and 2,500 other formats

Citation generator

Get explanations, summaries, and answers on academic papers

Ease up your research workflow with {scispace}'s cohort of exciting AI tools

Elevate your academic writing skills and convey your ideas the way you want

Paraphraser

Explore our range of reading and writing tools

Your file is being prepared and should be ready in a few minutes. If it's a large file, it might take a bit longer. You can close this window, and we'll email you the file when it's done.

You have reached a maximum limit of <strong>{limit}</strong> columns in the table. Remove at least <strong>1</strong> column to add or create another one.

Maged Haggag

Author Tools

Chat about Author

Papers

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

Early Integrated Palliative Care in a Multidisciplinary Interstitial Lung Disease (ILD) Collaborative Reduces Hospitalizations for Idiopathic Pulmonary Fibrosis (IPF)