Background: The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care.
Methods: A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions.
Results: An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan.
Conclusion: Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1016/j.jcf.2017.10.011 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Practical Application of Value-Based Medicine in Chronic Pelvic Pain: A Qualitative Study.
J Eval Clin Pract
February 2025
Department of Obstetrics and Gynecology, Radboud University Medical Center, Nijmegen, The Netherlands.
Rationale: Chronic pelvic pain syndrome (CPPS) is prevalent and a complex multifactorial condition. The incidence is rising. CPPS patients may benefit from multidisciplinary care in a structured care pathway.
View Article and Find Full Text PDFImplantable cardioverter defibrillator deactivation and end-of-life: British Heart Rhythm Society practical consensus guideline.
BMJ Support Palliat Care
December 2024
Wolfson Palliative Care Research Centre, University of Hull, Hull, UK.
Implantable cardioverter defibrillators (ICDs) are implanted in increasing numbers of patients with the aim of treating ventricular arrhythmias in high-risk patients and reducing their risk of dying. Individuals are also living longer with these devices. As a result, a greater number of patients with an ICD will deteriorate either with worsening cardiac failure, another non-cardiac condition or general frailty and will have a limited prognosis.
View Article and Find Full Text PDFThe Behavior of Nasopharynx Malignancies: a Retrospective Study in a Ten-Year Sample.
Neuro Endocrinol Lett
December 2024
Department of Otorhinolaryngology, University Hospital in Pilsen, Faculty of Medicine in Pilsen, Charles University, Czech Republic.
Objectives: Malignant tumors of the nasopharynx make up 3% of malignancies in the ENT area. The most common nasopharyngeal malignancy is nasopharyngeal carcinoma (NPC), followed by lymphomas. Other nasopharyngeal tumors are very rare.
View Article and Find Full Text PDFNeurocritical Care in 2024: Where are We Headed?
World Neurosurg
December 2024
Clinical and Translational Neuroscience Unit, Department of Neurology and Feil Brain and Mind Research Institute, Weill Cornell Medicine, New York, New York, USA. Electronic address:
Providing specialized care to critically ill neurology patients has improved outcomes for patients with neurological emergencies; however, there are still some gaps in neurocritical care (NCC) that offer opportunities for improvement. Among these gaps, improving education of the multidisciplinary NCC team, targeting individualized treatments for neurologically critically ill patients, and reducing disparities for undeserved patients as well as disadvantaged areas are priorities to advance the field. This review focuses on the current challenges neurointensivists face, including difficulties in neuroprognostication, ethical challenges in end-of-life care, and neuropalliative care.
View Article and Find Full Text PDFOlder Adults With Obesity: Need for 4Ms Age-Friendly Approach to Care.
J Am Geriatr Soc
December 2024
Division of Geriatric and Palliative Medicine, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, Michigan, USA.
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!