Mara R Hobler1,2, Ruth A Engelberg1,2, J Randall Curtis1,2, Kathleen J Ramos2, Miriam I Zander3, Shacole S Howard4, Christopher H Goss2,5,6, Moira L Aitken2. 1. 1 Cambia Palliative Care Center of Excellence, University of Washington , Seattle, Washington. 2. 2 Division of Pulmonary, Critical Care and Sleep Medicine, University of Washington , Seattle, Washington. 3. 3 Touro College of Osteopathic Medicine , New York, New York. 4. 4 Sports Medicine Center, University of Washington Medical Center , Seattle, Washington. 5. 5 Seattle Children's Hospital , Seattle, Washington. 6. 6 Pediatric Pulmonology, Department of Pediatrics, University of Washington , Seattle, Washington.
Abstract
BACKGROUND: 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. OBJECTIVES: (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. METHODS: 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. RESULTS: 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 about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF. CONCLUSION: Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.
BACKGROUND: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. OBJECTIVES: (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. METHODS: 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. RESULTS: 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 about their wishes for care if they were to become sicker, but mixed-methods data demonstrated that more than half of participants were willing to receive palliative care services provided those services were adapted to CF. CONCLUSION:Patients expressed a need for and openness to palliative care services, as well as some reluctance. They appreciated clinician communication that was open, forthcoming, and attuned to individualized concerns.
Authors: Todd MacKenzie; Alex H Gifford; Kathryn A Sabadosa; Hebe B Quinton; Emily A Knapp; Christopher H Goss; Bruce C Marshall Journal: Ann Intern Med Date: 2014-08-19 Impact factor: 25.391
Authors: Anne L Stephenson; Jenna Sykes; Sanja Stanojevic; Bradley S Quon; Bruce C Marshall; Kristofer Petren; Josh Ostrenga; Aliza K Fink; Alexander Elbert; Christopher H Goss Journal: Ann Intern Med Date: 2017-03-14 Impact factor: 25.391
Authors: Elisabeth P Dellon; Melissa Basile; Mara R Hobler; Anna M Georgiopoulos; Elaine Chen; Jessica Goggin; Christopher H Goss; Sarah E Hempstead; Albert Faro; Dio Kavalieratos Journal: J Palliat Med Date: 2020-02-05 Impact factor: 2.947
Authors: Kathleen J Ramos; Mara R Hobler; Ruth A Engelberg; J Randall Curtis; Miriam I Zander; Shacole S Howard; Christopher H Goss; Moira L Aitken Journal: J Cyst Fibros Date: 2019-04-17 Impact factor: 5.482
Authors: Linda C Chyr; Lyndsay DeGroot; Julie M Waldfogel; Susan M Hannum; Danetta H Sloan; Valerie T Cotter; Allen Zhang; JaAlah-Ai Heughan; Renee F Wilson; Karen A Robinson; Sydney M Dy Journal: Ann Fam Med Date: 2022 Jan-Feb Impact factor: 5.707
Authors: Dio Kavalieratos; Anna M Georgiopoulos; Lara Dhingra; Melissa J Basile; Elliot Rabinowitz; Sarah E Hempstead; Albert Faro; Elisabeth P Dellon Journal: J Palliat Med Date: 2020-09-16 Impact factor: 2.947