Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients' Needs

Journal of Palliative Medicine
Mara R HoblerMoira L Aitken

Abstract

Persons with cystic fibrosis (CF) experience high morbidity and mortality, yet little is known about their palliative care needs and how clinicians may address these needs. (1) To identify palliative care and advance care planning needs of patients with CF and their families; and (2) to identify clinicians' potential roles in meeting these needs. A mixed-methods study of adult patients (age ≥18 years) with moderate-to-severe CF [forced expiratory volume in the first second (FEV1) <65% predicted] were recruited from a CF Center. Semi-structured interviews (30-60 minutes) and questionnaires were administered in person or by phone. Grounded theory was used to analyze the interviews. Questionnaires were analyzed descriptively. Forty-nine patients (FEV1 % range = 19%-63%) participated; the participation rate was 80% for eligible patients. Three main domains of palliative care needs were identified: (1) to be listened to, feel heard, and be "seen"; (2) understanding the context around CF and its trajectory, with the goal of preparing for the future; and (3) information about, and potential solutions to, practical and current circumstances that cause stress. In questionnaires, few patients (4.3%) reported talking with their clinician ...Continue Reading

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Citations

Oct 20, 2018·Journal of Palliative Medicine·Rachel W LinnemannLael M Yonker
Feb 6, 2020·Journal of Palliative Medicine·Elisabeth P DellonDio Kavalieratos
May 10, 2020·Pediatric Pulmonology·Elizabeth T TrandelElisabeth P Dellon
Jul 18, 2020·Pediatric Pulmonology·Elisha Waldman, Megan Quinn
Dec 24, 2018·Congenital Heart Disease·Jill M SteinerJ Randall Curtis
Mar 3, 2020·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Siddhartha G KapnadakRichard H Simon
Apr 21, 2019·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Kathleen J RamosMoira L Aitken
Jul 1, 2021·Journal of Palliative Medicine·Sarah H ToddJennifer L Goralski

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