Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease

Pulmonary Fibrosis Foundation

doi:10.1016/j.chest.2022.03.009

Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease

Pulmonary Fibrosis Foundation

Medicine, Pulmonary Division

Research output: Contribution to journal › Article › peer-review

6 Scopus citations

Abstract

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.

Original language	English (US)
Pages (from-to)	375-384
Number of pages	10
Journal	CHEST
Volume	162
Issue number	2
DOIs	https://doi.org/10.1016/j.chest.2022.03.009
State	Published - Aug 2022

Funding

Funding/support: The research reported in this publication was supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health [Grant T32HL007534 to B. Seth]. Author contributions: The authors are responsible for all content of the manuscript. R. A. G. and B. S. contributed to manuscript preparation and data analysis. L. A. contributed to survey dissemination and data collection. L. O. N. P. Z. S. R. K. Y. M. D. C. and K. L. contributed to survey development. J. S. contributed to manuscript preparation. S. K. D. contributed to survey development and manuscript preparation. Funding/support: The research reported in this publication was supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health [Grant T32HL007534 to B. Seth]. Financial/nonfinancial disclosures: None declared. Role of sponsors: The content is solely the responsibility of the authors and does not necessarily represent the views of the National Institutes of Health. ∗Pulmonary Fibrosis Foundation collaborators: Contributors from the Pulmonary Fibrosis Foundation include: Divya Patel, DO, MBA (University of Florida Health); Timothy P.M. Whelan, MD (Medical University of South Carolina); Traci Adams, MD (University of Texas Southwestern Medical Center); Janell Reichuber, MSN, RN (University of Kansas Health System); Tonya Russell, MD (Washington University School of Medicine); Heather Bachert, MSN, ANP-BC (Henry Ford Health System); Tracy R. Luckhardt, MD, MS (University of Alabama at Birmingham); Lake Morrison, MD (Duke University Medical Center); Jane E. Dematte, MD MBA (Northwestern Memorial Hospital); Ria Edwina Gripaldo, MD (Emory University); Michael Henderson (Patient Representative); Krishna Thavarajah, MD (Henry Ford Health System); and Rade Tomic, MD (Northwestern Memorial Hospital). Additional information: The e-Figure and e-Tables are available online under " Supplementary Data."

Keywords

interstitial lung disease
palliative care
pulmonary fibrosis

ASJC Scopus subject areas

Pulmonary and Respiratory Medicine
Critical Care and Intensive Care Medicine
Cardiology and Cardiovascular Medicine

Access to Document

10.1016/j.chest.2022.03.009

Cite this

@article{e707fd61c4fc4962a78a58a1aaff00f3,

title = "Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease",

abstract = "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.",

keywords = "interstitial lung disease, palliative care, pulmonary fibrosis",

author = "{Pulmonary Fibrosis Foundation} and Gersten, {Rebecca A.} and Bhavna Seth and Luis Arellano and Jessica Shore and Lanier O'Hare and Nina Patel and Zeenat Safdar and Rachana Krishna and Yolanda Mageto and Darlene Cochran and Kathleen Lindell and Danoff, {Sonye K.} and Divya Patel and Whelan, {Timothy P.M.} and Traci Adams and Janell Reichuber and Tonya Russell and Heather Bachert and Luckhardt, {Tracy R.} and Lake Morrison and Dematte, {Jane E.} and Gripaldo, {Ria Edwina} and Michael Henderson and Krishna Thavarajah and Rade Tomic",

note = "Publisher Copyright: {\textcopyright} 2022 American College of Chest Physicians",

year = "2022",

month = aug,

doi = "10.1016/j.chest.2022.03.009",

language = "English (US)",

volume = "162",

pages = "375--384",

journal = "CHEST",

issn = "0012-3692",

publisher = "Elsevier Inc.",

number = "2",

}

TY - JOUR

T1 - Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease

AU - Pulmonary Fibrosis Foundation

AU - Gersten, Rebecca A.

AU - Seth, Bhavna

AU - Arellano, Luis

AU - Shore, Jessica

AU - O'Hare, Lanier

AU - Patel, Nina

AU - Safdar, Zeenat

AU - Krishna, Rachana

AU - Mageto, Yolanda

AU - Cochran, Darlene

AU - Lindell, Kathleen

AU - Danoff, Sonye K.

AU - Patel, Divya

AU - Whelan, Timothy P.M.

AU - Adams, Traci

AU - Reichuber, Janell

AU - Russell, Tonya

AU - Bachert, Heather

AU - Luckhardt, Tracy R.

AU - Morrison, Lake

AU - Dematte, Jane E.

AU - Gripaldo, Ria Edwina

AU - Henderson, Michael

AU - Thavarajah, Krishna

AU - Tomic, Rade

PY - 2022/8

Y1 - 2022/8

N2 - 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.

AB - 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.

KW - interstitial lung disease

KW - palliative care

KW - pulmonary fibrosis

UR - http://www.scopus.com/inward/record.url?scp=85133813309&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85133813309&partnerID=8YFLogxK

U2 - 10.1016/j.chest.2022.03.009

DO - 10.1016/j.chest.2022.03.009

M3 - Article

C2 - 35305969

AN - SCOPUS:85133813309

SN - 0012-3692

VL - 162

SP - 375

EP - 384

JO - CHEST

JF - CHEST

IS - 2

ER -

Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease

Abstract

Funding

Keywords

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this