Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD). Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results: Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD.Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD). Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Results:Patients (n = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers (n = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% (n = 6) of participants had poor quality of life, 45% (n = 9) had moderate-severe anxiety symptoms, 25% (n = 5) had moderate-severe depressive symptoms, and 40% (n = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: 1) coping with COPD; 2) emotional symptoms; 3) respiratory symptoms; 4) illness understanding; and 5) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD.Conclusions: Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
Authors: Claus F Vogelmeier; Gerard J Criner; Fernando J Martinez; Antonio Anzueto; Peter J Barnes; Jean Bourbeau; Bartolome R Celli; Rongchang Chen; Marc Decramer; Leonardo M Fabbri; Peter Frith; David M G Halpin; M Victorina López Varela; Masaharu Nishimura; Nicolas Roche; Roberto Rodriguez-Roisin; Don D Sin; Dave Singh; Robert Stockley; Jørgen Vestbo; Jadwiga A Wedzicha; Alvar Agusti Journal: Eur Respir J Date: 2017-03-06 Impact factor: 16.671
Authors: Anand S Iyer; Kristen E Holm; Surya P Bhatt; Victor Kim; Gregory L Kinney; Frederick S Wamboldt; Michael R Jacobs; Elizabeth A Regan; Hilary F Armstrong; Katherine E Lowe; Carlos H Martinez; Mark T Dransfield; Marilyn G Foreman; Gen Shinozaki; Nicola A Hanania; Robert A Wise; Barry J Make; Karin F Hoth Journal: J Psychosom Res Date: 2019-01-07 Impact factor: 3.006
Authors: Clara J Schroedl; Susan E Yount; Eytan Szmuilowicz; Paul J Hutchison; Sharon R Rosenberg; Ravi Kalhan Journal: Ann Am Thorac Soc Date: 2014-11
Authors: Vicki A Jackson; Juliet Jacobsen; Joseph A Greer; William F Pirl; Jennifer S Temel; Anthony L Back Journal: J Palliat Med Date: 2013-06-20 Impact factor: 2.947
Authors: Jacqueline O'Toole; Han Woo; Nirupama Putcha; Christopher B Cooper; Prescott Woodruff; Richard E Kanner; Robert Paine; Russell P Bowler; Alejandro Comellas; Karin F Hoth; Jerry A Krishnan; Meilan Han; Mark Dransfield; Anand S Iyer; David Couper; Stephen P Peters; Gerard Criner; Victor Kim; R Graham Barr; Fernando J Martinez; Nadia N Hansel; Michelle N Eakin Journal: Ann Am Thorac Soc Date: 2022-02
Authors: Anand S Iyer; James Nicholas Dionne-Odom; Dina M Khateeb; Lanier O'Hare; Rodney O Tucker; Cynthia J Brown; Mark T Dransfield; Marie A Bakitas Journal: J Palliat Med Date: 2019-10-29 Impact factor: 2.947
Authors: Nothando Ngwenya; Clare Crang; Morag Farquhar; Robert C Rintoul; Ravi Mahadeva; Lori D Calvert; Scott A Murray; Stephen Barclay Journal: Fam Pract Date: 2021-09-25 Impact factor: 2.267
Authors: Simen A Steindal; Andréa Aparecida Goncalves Nes; Tove E Godskesen; Alfhild Dihle; Susanne Lind; Anette Winger; Anna Klarare Journal: J Med Internet Res Date: 2020-05-05 Impact factor: 5.428