Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease.
interstitial lung disease
palliative care
pulmonary fibrosis
Journal
Chest
ISSN: 1931-3543
Titre abrégé: Chest
Pays: United States
ID NLM: 0231335
Informations de publication
Date de publication:
08 2022
08 2022
Historique:
received:
18
12
2021
revised:
13
02
2022
accepted:
06
03
2022
pubmed:
21
3
2022
medline:
11
8
2022
entrez:
20
3
2022
Statut:
ppublish
Résumé
Interstitial lung disease (ILD) results in profound symptom burden and carries high mortality. Palliative care (PC) is dedicated to improving quality of life in patients with serious illness. Early PC provision improves rates of advance care planning and symptom management in patients with ILD. What are the current perspectives on PC among ILD providers, and what are the barriers to PC in ILD specialty centers? A 24-question electronic survey was disseminated to providers at the 68 Pulmonary Fibrosis Foundation Care Centers across the United States from October 2020 to December 2020. The survey was completed by 128 participants representing all 68 Pulmonary Fibrosis Foundation Care Center Network sites. Most respondents were physicians. Most providers exhibit good knowledge of, feel comfortable assessing a patient's readiness for, and agree with the need for PC for patients with ILD. Providers are most likely to refer to PC at objective disease and/or symptomatic progression rather than at initial diagnosis. In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack local PC availability (P < .01) and less likely to feel comfortable discussing prognosis/disease trajectory (P = .03) or feel it is important to address advance directives in ILD clinic (P = .02). There is a lack of standardized measures used to assess specific symptoms, overall symptom burden, or health-related quality of life across institutions. Discordance exists between self-reported and actual access to local inpatient and outpatient PC services. Most ILD providers use PC and are comfortable discussing PC. Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of systematic tools to assess symptom burden, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery.
Sections du résumé
BACKGROUND
Interstitial lung disease (ILD) results in profound symptom burden and carries high mortality. Palliative care (PC) is dedicated to improving quality of life in patients with serious illness. Early PC provision improves rates of advance care planning and symptom management in patients with ILD.
RESEARCH QUESTION
What are the current perspectives on PC among ILD providers, and what are the barriers to PC in ILD specialty centers?
STUDY DESIGN AND METHODS
A 24-question electronic survey was disseminated to providers at the 68 Pulmonary Fibrosis Foundation Care Centers across the United States from October 2020 to December 2020.
RESULTS
The survey was completed by 128 participants representing all 68 Pulmonary Fibrosis Foundation Care Center Network sites. Most respondents were physicians. Most providers exhibit good knowledge of, feel comfortable assessing a patient's readiness for, and agree with the need for PC for patients with ILD. Providers are most likely to refer to PC at objective disease and/or symptomatic progression rather than at initial diagnosis. In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack local PC availability (P < .01) and less likely to feel comfortable discussing prognosis/disease trajectory (P = .03) or feel it is important to address advance directives in ILD clinic (P = .02). There is a lack of standardized measures used to assess specific symptoms, overall symptom burden, or health-related quality of life across institutions. Discordance exists between self-reported and actual access to local inpatient and outpatient PC services.
INTERPRETATION
Most ILD providers use PC and are comfortable discussing PC. Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of systematic tools to assess symptom burden, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery.
Identifiants
pubmed: 35305969
pii: S0012-3692(22)00442-1
doi: 10.1016/j.chest.2022.03.009
pmc: PMC9633804
pii:
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
375-384Subventions
Organisme : NHLBI NIH HHS
ID : T32 HL007534
Pays : United States
Investigateurs
Divya Patel
(D)
Timothy P M Whelan
(TPM)
Traci Adams
(T)
Janell Reichuber
(J)
Tonya Russell
(T)
Heather Bachert
(H)
Tracy R Luckhardt
(TR)
Lake Morrison
(L)
Jane E Dematte
(JE)
Ria Edwina Gripaldo
(RE)
Michael Henderson
(M)
Krishna Thavarajah
(K)
Rade Tomic
(R)
Informations de copyright
Copyright © 2022 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.
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