Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. Based on feedback from patients and families living with IPF, we developed the S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P-Palliative Care, O-Oxygen Therapy, R-Research Considerations and T-Transplantation ('SUPPORT') intervention to increase knowledge of the disease, teach self-management strategies and facilitate preparedness with end of life (EOL) planning.
Methods: This study is a randomised trial to test the efficacy of SUPPORT intervention compared with routine care in patients with IPF and their caregivers delivered after three clinical visits. We are recruiting a cohort of 64 new IPF patient/caregiver dyads (32 for each dyad).
Results: The trial will evaluate whether the SUPPORT intervention decreases stress, improves symptom burden, quality of life, preparedness and advance care planning for patients and caregivers, quality of dying and death for caregivers if the patient dies during the course of the study, as well as assess the impact of primary palliative care on healthcare resource use near the EOL.
Conclusion: By increasing knowledge of the disease, teaching self-management strategies and facilitating preparedness with EOL planning, we will address a critical gap in the care of patients with IPF.
Trial Registration Number: NCT02929017; Pre-results.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5844378 | PMC |
| http://dx.doi.org/10.1136/bmjresp-2017-000272 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
SAHD-10: Development and initial validation of a short version of the Schedule of Attitudes Toward Hastened Death based on a large multinational sample.
Palliat Support Care
January 2025
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Objectives: Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection.
View Article and Find Full Text PDFAcute Effects of Serial and Integrated Concurrent Exercise on Circulating microRNAs -126 and -222 in Sedentary Adults.
Int J Exerc Sci
December 2024
School of Health Promotion and Kinesiology, Texas Woman's University, Denton, TX, USA.
The purpose of this study was to compare changes in circulating microRNAs -126 (c-miR-126) and -222 (c-miR-222) following acute serial concurrent exercise (SCE) and integrated concurrent exercise (ICE) sessions among young, sedentary adults. Ten males and 9 females completed the study procedures. For SCE, participants performed resistance exercise (RE) followed by aerobic exercise (AE), without mixing the two.
View Article and Find Full Text PDFSurvival and quality of life after first-time diagnosis of brain metastases: a multicenter, prospective, observational study.
Lancet Reg Health Eur
February 2025
Department of Oncology, Oslo University Hospital, PO Box 4950 Nydalen, Oslo, 0424, Norway.
Background: A major concern in anticancer treatment (ACT) of brain metastases (BM) is exposing patients with short expected survival to treatments that negatively impact on quality of life (QoL). Such futile ACT at the end of life is time-consuming and burdensome for patients and their families and entails unnecessary healthcare costs. Refraining from ACT is challenging for both physicians and patients.
View Article and Find Full Text PDFImpact of mindfulness-based tri-modal prehabilitation on functional recovery and selected surgical outcomes of patients with colorectal cancer admitted to surgical hospital wards: the first international randomised control trial for mindfulness-based tri-modal prehabilitation.
BMJ Open
December 2024
Centre for Mindfulness-Based Research and Practices, University of Sri Jayewardenepura, Nugegoda, Sri Lanka
Introduction: Colorectal cancer (CRC) is the third most common and second most deadly cancer worldwide, with significant morbidity and mortality risks. Despite advancements in surgical care, postoperative complications and recovery challenges persist. The severity of these issues is linked to preoperative functional capacity and emotional distress.
View Article and Find Full Text PDFCost efficiency of inpatient rehabilitation following acquired brain injury: the first international adaptation of the UK approach.
BMJ Open
December 2024
Regional Rehabilitation Unit, Northwick Park Hospital, London, UK.
Objectives: To adapt and apply a model for evaluating the functional benefits and cost efficiency of specialist inpatient rehabilitation to the Australian context, comparing functional outcomes and savings in the cost of ongoing care after acquired brain injury.
Design: An observational cohort analysis of prospectively collected clinical data from admission to discharge, with follow-up to 3 years.
Setting: A newly established state-wide inpatient postacute rehabilitation unit in Victoria, Australia for patients with moderate to severe acquired brain injury.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!