Evaluation of Pain, Dyspnea, and Goals of Care Among Adults With Cystic Fibrosis: A Comprehensive Palliative Care Survey

Abstract

Pain and dyspnea are common among adults with CF. Few had an advance directive in place, but most are open to discussing EOLC issues. Results of this single-center study may not represent the entire population, thus a multicenter investigation should be pursued.

Exploring knowledge and perceptions of palliative care to inform integration of palliative care education into cystic fibrosis care

“…While the current structure of care at CF care centers accredited by the Cystic Fibrosis Foundation afford patients continuity of care with providers from a variety of disciplines, the CF care team does not always comprehensively address palliative care needs. Symptoms such as dyspnea, cough, pain, and fatigue are common in individuals with CF regardless of disease severity and are known to increase as lung disease progresses . Aided by guidelines from the Cystic Fibrosis Foundation, centers have gained appreciation for the prevalence and impact of mood disorders among individuals with CF.…”

Cystic fibrosis year in review 2017

“…In end‐stage lung disease, clinicians need to assist patients in addressing end‐of‐life issues and referral for lung transplantation. A survey on pain, dyspnea, and advance care planning was administered to 37 adult patients at one center . The surveys were well received and patients were open to discussion.…”

Palliative care in pulmonary medicine

“…As a result, there has been a greater impact on family relationships and on the way patients make choices for the future (occupation, love life, parenthood, and infertility). 27 …”