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.
Key Words: interstitial lung disease, palliative care, pulmonary fibrosis
Abbreviations: CCN, Care Center Network; HRQOL, health-related quality of life; ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PC, palliative care; PFF, Pulmonary Fibrosis Foundation
Graphical Abstract
Interstitial lung disease (ILD) includes a group of heterogenous lung diseases often characterized by fibrotic destruction of lung parenchyma.1 Mortality varies by underlying disease pathology with a median survival of about 5 years in patients with progressive fibrosing ILD.2 Acute exacerbations of ILD portend increased mortality within 6 to 12 months. Nevertheless, there is often a lack of preparedness for death by both patients and providers, contributing to increased distress.1,3,4 In addition to high mortality, patients with ILD suffer from a poor quality of life with a profound symptom burden, similar to that of patients with lung cancer.1,3 Patients often suffer from refractory breathlessness, intense fatigue, and persistent cough years prior to death, contributing to physical inactivity, deconditioning, and further worsening symptoms.5
Palliative care (PC) is the field of medicine dedicated to improving quality of life for patients facing serious illness and their families. National guidelines recommend that PC be offered to patients who are diagnosed with serious life-limiting illness.6 The American Thoracic Society “strongly endorses the concept that PC should be available to all patients at all stages of illness and should be individualized based on the needs and preferences of the patient and the patient’s family.”7 The American College of Chest Physicians “strongly supports the position that…palliative and end-of-life care of the patient with an acute devastating or chronically progressive pulmonary or cardiac disease and his/her family should be an integral part of cardiopulmonary medicine.”8 Although traditionally equated with hospice or end-of-life care, PC is not limited to a patient’s terminal phase. PC is successful in improving breathlessness in chronic lung disease and can increase survival.9
Most patients with idiopathic pulmonary fibrosis (IPF) die in a hospital setting with ongoing life-prolonging procedures up until the time of death.10 PC involvement in ILD occurs infrequently and often late in the disease course.11 When PC is only introduced at the end of life, caregivers feel they may have benefited from earlier involvement, with longitudinal relationships and earlier symptom amelioration.3 Patients with IPF who received early referral to PC had more in-home and hospice deaths; > 90% of patients prefer to die in these locations.12,13 Additionally, from a cost perspective, the provision of both home PC and hospice in patients with advanced disease and refractory breathlessness contributes < 1% of formal care costs.14
Despite the documented benefits of PC in ILD, the availability of PC services is often fragmented and varies depending on caregiver practice and geographic location.3 Lack of availability of local PC services is a recognized barrier, especially in more rural parts of the United States.4 In fact, < 10% of patients with ILD were found to have access to both inpatient and outpatient PC services.15 Patients may be concerned that PC services would add prohibitive cost, especially if transportation is a challenge.4 Additionally, patients may worry that PC is akin to death/end of life, or giving up.16 Patients generally prefer to have specialist PC involvement, even if their other providers are comfortable providing generalist PC.4 However, providers are often unsure of the optimal timing to refer patients to PC, and no current guidelines exist.3 ILD providers are at the front line to recognize PC needs, and it is critical that ILD providers are attuned to the unmet needs of their patients and aware of available PC resources.
PC should have a key and early role in ILD care given the clear benefits with low cost. However, PC is not currently being used effectively. Barriers to PC provision for the population with ILD within the United States remain poorly characterized. The aim of this study was to explore provider perspectives on PC and examine the availability of PC for the patient population with ILD by surveying providers at the 68 Pulmonary Fibrosis Foundation (PFF) Care Center Network (CCN) sites. Information obtained from this study is vital to understanding the current status of PC in ILD specialty centers and is a necessary first step prior to implementing measures to improve incorporation of PC in ILD care.
Study Design and Methods
An electronic survey (e-Fig 1) was distributed by e-mail to the 68 PFF CCN sites in the United States with a request that it be completed by at least two members of the CCN team (one physician and one nurse or allied health professional). The survey was also distributed by means of a restricted social media platform that included nurses and allied health professionals at the CCN sites and at other non-CCN ILD specialty programs. The survey was developed by consensus after an extensive literature review on PC in ILD. The members of the survey development committee included physicians, advanced practice providers, nurses, and patients. Key committees addressed and developed core concepts within the survey (e-Fig 2). The main domains of the questionnaire were as follows: (1) baseline knowledge of PC, (2) provider comfort in communication regarding PC, (3) practices regarding assessment of symptom burden and health-related quality of life (HRQOL), (4) PC referral practices, and (5) desire for additional educational tools. Data on provider role and years of experience were collected to characterize respondents.
Participants received an invitation to answer the questionnaire through e-mail or via a restricted social media site. Study data were collected and managed using Research Electronic Data Capture tools hosted at the PFF.17,18 Research Electronic Data Capture is a secure, web-based software platform designed to support data capture for research studies, providing (1) an intuitive interface for validated data capture, (2) audit trails for tracking data manipulation and export procedures, (3) automated export procedures for seamless data downloads to common statistical packages, and (4) procedures for data integration and interoperability with external sources. All completed questionnaires were considered eligible. The survey was completed between October 2020 and January 2021 by 128 individuals, with 100% of PFF CCN sites responding. No incentives were offered, and consent was implicit in completing the survey.
To externally evaluate PC availability at PFF CCN sites, data were obtained from the Center to Advance Palliative Care through www.getpalliativecare.org. The designation of hospital-based PC refers to the availability of inpatient palliative services at the PFF CCN site, whereas office-based PC refers to the presence of outpatient palliative medicine, and home-based PC refers to the option of home-based palliative services within 32 kilometers of the PFF center site.
All statistical analyses were performed with Stata 16.1 (StataCorp) and Microsoft Excel 2019 (Microsoft Inc). Frequencies were reported for categorical data. The χ2 or Fisher exact test was used to assess statistical significance of differences in categorical variables between groups.
Results
Surveys were completed by 128 providers from 68 PFF Care Centers across 34 states. Five respondents were included who were at ILD specialty centers but not part of a care center. Table 1 describes demographic data for respondents, most of whom were physicians (61%) and identified as White race (67%). Respondents demonstrate a wide range of years of experience and represent PFF Care Centers throughout the United States (Fig 1).
Table 1.
Demographic Information of Survey Respondents
| Demographic Variable | No. (%) |
|---|---|
| Profession | |
| Physician | 79 (61.7) |
| Registered nurse | 25 (19.5) |
| Advanced practice providera | 21 (16.4) |
| Other | 2 (1.6) |
| Respiratory therapist | 1 (0.8) |
| Years of experience | |
| 0-5 | 37 (28.9) |
| 6-10 | 27 (21.1) |
| 11-15 | 19 (14.8) |
| > 15 | 45 (35.2) |
| Race | |
| White | 86 (67.2) |
| Asian/Native Hawaiian or other Pacific Islander | 25 (19.5) |
| Black | 4 (3.1) |
| Prefer not to answer | 13 (10.2) |
| Ethnicity | |
| Not Hispanic or Latino or Spanish origin | 108 (84.4) |
| Hispanic or Latino or Spanish origin | 4 (3.1) |
| Prefer not to answer | 16 (12.5) |
| Location by Census region | |
| Pacific | 14 (10.9) |
| Mountain | 8 (6.3) |
| West North Central | 14 (10.9) |
| East North Central | 18 (14.1) |
| West South Central | 13 (10.2) |
| East South Central | 6 (4.7) |
| South Atlantic | 25 (19.5) |
| Middle Atlantic | 19 (14.8) |
| New England | 10 (7.8) |
| Outside of United States | 1 (0.8) |
An advanced practice provider is a health care provider, usually a nurse practitioner or physician assistant, who performs medical activities under the supervision of a physician.
Figure 1.
Heat map with location of survey respondents from 34 states with highest percentage of respondents represented by dark red. Gray color indicates lack of data from these states.
Most respondents demonstrated knowledge that PC and hospice are not synonymous and that PC includes symptom management, advance directives, spiritual care, and psychological care (Table 2). Regarding their practice, respondents reported a higher level of comfort in discussing prognosis (91% agree or strongly agree) than in assessing a patient’s readiness for and acceptance of PC (88% of total respondents agree or strongly agree). Although 95% of all respondents agree or strongly agree it is important to address advance directives, only 66% agree or strongly agree that they address advance directives in the outpatient ILD clinic. Most respondents (67%) either agree or strongly agree that they use PC services for patients with ILD. There were no statistically significant differences appreciated when dichotomizing the aforementioned questions between respondents with > 10 or < 10 years’ experience (e-Table 1).
Table 2.
Evaluation of Palliative Care Knowledge and Practice Patterns Stratified by Physician vs Nonphysician
| Survey Items | Physicians (n = 79; 61.7%) | Nonphysicians (n = 49; 38.3%) |
|---|---|---|
| Palliative care and hospice offer the same service(s) | ||
| Strongly disagree | 16 (20.3) | 5 (10.2) |
| Disagree | 54 (68.4) | 37 (75.5) |
| Neutral | 3 (3.8) | 4 (8.2) |
| Agree | 3 (3.8) | 1 (2.0) |
| Strongly agree | 2 (2.5) | 1 (2.0) |
| Missing responses | 1 (1.3) | 1 (2.0) |
| Palliative care services include the following (check all that apply): | ||
| Symptom management | ||
| Yes | 79 (100.0) | 48 (98.0) |
| No | 0 (0.0) | 1 (2.0) |
| Advance directives | ||
| Yes | 77 (97.5) | 47 (95.9) |
| No | 2 (2.5) | 2 (4.1) |
| Spiritual care | ||
| Yes | 72 (91.1) | 45 (91.8) |
| No | 7 (8.9) | 4 (8.2) |
| Psychological care | ||
| Yes | 75 (94.9) | 47 (95.9) |
| No | 4 (5.1) | 2 (4.1) |
| I am comfortable discussing prognosis and disease trajectory with patients with ILD | ||
| Neutral | 7 (8.9) | 4 (8.2) |
| Agree | 36 (45.6) | 29 (59.2) |
| Strongly agree | 36 (45.6) | 15 (30.6) |
| Missing responses | 0 (0.0) | 1 (2.0) |
| I feel comfortable assessing a patient’s readiness for and acceptance of palliative care | ||
| Disagree | 2 (2.5) | 1 (2.0) |
| Neutral | 8 (10.1) | 3 (6.1) |
| Agree | 39 (49.4) | 33 (67.3) |
| Strongly agree | 30 (38.0) | 11 (22.4) |
| Missing responses | 0 (0.0) | 1 (2.0) |
| It is important to address advance directives in the outpatient ILD clinic | ||
| Neutral | 4 (5.1) | 2 (4.1) |
| Agree | 23 (29.1) | 22 (44.9) |
| Strongly agree | 52 (65.8) | 24 (49.0) |
| Missing responses | 0 (0.0) | 1 (2.0) |
| I address advance directives in my outpatient ILD clinic | ||
| Disagree | 8 (10.1) | 6 (12.2) |
| Neutral | 17 (21.5) | 11 (22.4) |
| Agree | 34 (43.0) | 21 (42.9) |
| Strongly agree | 20 (25.3) | 10 (20.4) |
| Missing responses | 0 (0.0) | 1 (2.0) |
| How frequently do you monitor symptoms? | ||
| Monthly | 1 (1.3) | 2 (4.1) |
| Quarterly | 75 (94.9) | 45 (91.8) |
| Yearly | 2 (2.5) | 1 (2.0) |
| Missing responses | 1 (1.3) | 1 (2.0) |
| I use palliative care services for patients with ILD/PF | ||
| Strongly disagree | 2 (2.5) | 0 (0.0) |
| Disagree | 9 (11.4) | 4 (8.2) |
| Neutral | 15 (19.0) | 11 (22.4) |
| Agree | 36 (45.6) | 23 (46.9) |
| Strongly agree | 17 (21.5) | 10 (20.4) |
| Missing responses | 0 (0.0) | 1 (2.0) |
Values are No. (%). ILD = interstitial lung disease; PF = pulmonary fibrosis.
In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack of 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) (Table 3). Only 2% of providers who report referring patients to PC do so at initial ILD diagnosis. Most providers who refer to PC do so at objective disease progression (54%) and/or symptomatic progression (80%). Of those providers who rarely refer to PC (23% of respondents), 66% reported not having PC at their institution.
Table 3.
Characteristics of Respondents on Referral Patterns to Palliative Care
| Variable | Providers Who Refer to Palliative Care (n = 99; 77.3%) | Providers Who Rarely Refer to Palliative Care (n = 29; 22.7%) | P Value |
|---|---|---|---|
| Team role | |||
| Physician | 62 (62.6) | 17 (58.6) | .69 |
| Nonphysician | 37 (37.4) | 12 (41.4) | .66 |
| Years of experience | |||
| < 10 | 47 (47.5) | 17 (58.6) | .29 |
| > 10 | 52 (52.5) | 12 (41.4) | .29 |
| Timing of referral to palliative care (check all that apply) | |||
| At initial ILD diagnosis | 2 (2.0) | 0 (0.0) | > .99 |
| At objective disease progression | 53 (53.5) | 0 (0.0) | < .01 |
| At symptomatic progression | 79 (79.8) | 3 (10.3) | < .01 |
| At hospitalization | 42 (42.4) | 5 (17.2) | .02 |
| Determinants of lack of referral to palliative carea | |||
| Lack palliative care at institution | 4 (4.0) | 19 (65.5) | < .01 |
| Discomfort discussing palliative care | 1 (1.0) | 2 (6.9) | .13 |
| Insufficient time to discuss palliative care | 3 (3.0) | 5 (17.2) | .02 |
| I am comfortable addressing palliative care needs in my ILD clinic | 7 (7.1) | 7 (24.1) | .03 |
| I am comfortable discussing prognosis and disease trajectory with patients with ILD | |||
| Neutral | 5 (5.1) | 6 (20.7) | .03 |
| Agree | 54 (54.5) | 11 (37.9) | |
| Strongly agree | 39 (39.4) | 12 (41.4) | |
| Missing responses | 1 (1.0) | 0 (0.0) | |
| I feel comfortable assessing a patient’s readiness for and acceptance of palliative care | |||
| Disagree | 2 (2.0) | 1 (3.4) | .05 |
| Neutral | 6 (6.1) | 5 (17.2) | |
| Agree | 61 (61.6) | 11 (37.9) | |
| Strongly agree | 29 (29.3) | 12 (41.4) | |
| Missing responses | 1 (1.0) | 0 (0.0) | |
| It is important to address advance directives in the outpatient ILD clinic | |||
| Neutral | 2 (2.0) | 4 (13.8) | .02 |
| Agree | 38 (38.4) | 7 (24.1) | |
| Strongly agree | 58 (58.6) | 18 (62.1) | |
| Missing responses | 1 (1.0) | 0 (0.0) | |
| I address advance directives in my outpatient ILD clinic | |||
| Disagree | 11 (11.1) | 3 (10.3) | .62 |
| Neutral | 19 (19.2) | 9 (31.0) | |
| Agree | 44 (44.4) | 11 (37.9) | |
| Strongly agree | 24 (24.2) | 6 (20.7) | |
| Missing responses | 1 (1.0) | 0 (0.0) |
Values are No. (%) or as otherwise indicated. ILD = interstitial lung disease.
This question was only answered by those who stated they rarely refer patients to palliative care.
Most PFF Care Centers have access to hospital-based PC (96%), outpatient office-based PC (97%), and home-based PC (85%) (e-Table 2). Interestingly, 15% of respondents reported not having access to inpatient PC services that were present in national data, and 3% of respondents reported access to inpatient services which were not present in national data. Additionally, 38% of respondents reported no outpatient access to PC services when local PC services are present in national data, and 2% of respondents reported availability of outpatient PC services which were not present in national data. Twenty-three centers had more than one respondent from the same institute, and 52% of centers had dissonant responses between providers at the same center.
Most PFF Care Centers report assessing symptom burden and/or quality of life quarterly. There is great variation in the selection of questionnaires across centers for the evaluation of dyspnea, cough, depression, and fatigue (e-Table 3). Dyspnea was most frequently assessed via the Modified Medical Research Council Dyspnea Scale, and depression was most frequently assessed via the Patient Health Questionnaire-9. Neither of these instruments are specifically validated in the population with ILD. The most frequent tools used to assess overall symptom burden were scales created by the specific institution or physical examination rather than a validated questionnaire (e-Table 4). Only 8% of providers report using a standardized questionnaire to assess overall HRQOL, and no instruments are validated in the population with ILD (e-Table 5).
Most respondents agreed or strongly agreed that a handout describing long-term prognosis and disease trajectory in ILD (88%) or a handout describing PC options for patients with ILD and caregivers (93%) would be helpful.
Discussion
The PFF CCN is composed of both academic and community sites with specific interest and expertise in care for patients with ILD. To become a CCN site, a number of benchmarks in terms of experience and resources to provide this specialized care must be met.19 Notably, the availability of PC was not one of the requirements. Nevertheless, providers at these specialty sites are expected to be fully aware of the complex needs of patients with ILD. Therefore, we surveyed PFF CCN providers to better characterize current provider perspectives on and access to PC for patients with ILD. The survey focused on five areas that were identified as potentially impacting PC referral. Several barriers to timely provision of PC were identified, including lack of validated instruments to assess symptom burden, lack of established optimal timing of PC referral, unclear need for specialized PC delivery, and perceived lack of local access to PC.
Our study highlights discordance between provider self-report and actual access to both inpatient and outpatient PC services for PFF Care Centers. In one study surveying > 250 patients, only 29% were able to confirm access to PC services.20 A lack of awareness of local services may be an important barrier to PC delivery and could be rectified by patient and provider education on available services. Survey respondents overwhelmingly reported interest in the development of educational tools. Prior qualitative work highlights the need for high-quality disease information to be provided at the time of diagnosis.21 Therefore, in addition to understanding and addressing barriers to care, educational resources may be key to improving PC delivery to the population with ILD.
Development of guidelines on optimal timing of PC referral may prompt providers to consider earlier referral. This is particularly important because one-half of patients with IPF seen at one PFF Care Center experienced an ICU admission prior to their third clinic visit, and most patients died during ICU admission.22 For those patients who are able to be discharged from the ICU, 3-month mortality is 95%.23 Notably, there is nearly a 2-year delay between symptom onset in IPF and referral to a specialty lung center, suggesting that initial visit to a PFF Care Center may be the appropriate time to initiate PC referral.11 Our survey demonstrates that only 2% of providers refer to PC at initial diagnosis, consistent with findings from the British Thoracic Society ILD registry that 3% of patients are referred to PC at the first visit.15 Patients and providers may worry that PC referral could prompt a loss of hope or poor rapport in the initial visit.24 A large study from Europe demonstrated that one-fifth of health care providers surveyed report waiting until the end of life to initiate a PC referral.20 Although hospice is limited to the last 6 months of life, PC can and should be administered in parallel with curative care.7 Patients may undergo concurrent workup for lung transplantation. In fact, PC involvement may actually improve eligibility for transplantation and help facilitate a more comfortable death for those patients who die awaiting transplant.25
Although primary ILD specialists may be equipped to handle some PC needs of their patients, there remains a strong role for specialist PC. Patients most appropriate for PC referral are those with progressive, irreversible disease despite therapy.26 The British Thoracic Society27 specifically recommends a PC referral in those patients with progressive fibrotic pulmonary sarcoidosis with resulting respiratory failure. Unfortunately, no such guidelines exist for patients with ILD. In addition to PC referral for the most aggressive ILD phenotypes, we recommend specialist PC involvement for those patients with poorly controlled symptoms, regardless of disease phenotype.
An alternate model of early PC delivery may be to embed a PC specialist in a collaborative multidisciplinary ILD team. Only 10% of multidisciplinary ILD clinics across Europe, North America, and Australia have PC providers.28 PC embedded in an ILD multidisciplinary clinic increases rates of advance care planning, reduces ED visits and hospitalizations, and facilitates home or hospice rather than in-hospital death.13,29 This model may also allay patient concerns of abandonment after referral to PC and may help to mitigate unrealistic patient and family expectations regarding prognosis.30 The specific goals for PC involvement may need further elaboration, and a multidisciplinary team discussion of patient-specific options and trajectory may improve care and foster collaboration.
Patients with ILD often suffer from significant symptoms. Prior surveys have demonstrated a lack of utilization of standardized scales to assess symptoms.31 Our study supports this observation and demonstrates the heterogeneity in use of questionnaires to assess specific symptoms, HRQOL, and overall symptom burden. Ideally, standardized, validated scales would be used to assess PC needs and evaluate interventions aimed to improve quality of life across institutions. Tools that may be considered include the King’s Brief Interstitial Lung Disease Questionnaire and the IPF-specific version of the St. George’s Respiratory Questionnaire, which are the only two scales specifically validated in the population with ILD. Other options validated in patients with chronic respiratory disease include the Chronic Respiratory Disease Questionnaire and the modified or original Medical Research Council Dyspnea Scale.32 Interestingly, patients with high symptom burden do not always identify a need for PC support.33 This may be secondary to a lack of knowledge regarding the potential benefits of PC.
Access to health care, including financial barriers, may hinder patients’ ability to seek PC outside of the inpatient setting. Additional barriers may include lack of transportation, disabling dyspnea, and high supplemental oxygen requirements.24 It is critical that we learn how to navigate and eventually overcome these barriers. In fact, the emergence of COVID-19 forced an unprecedented transition to telemedicine. Telemedicine enables patients and their families to discuss advance care planning from the comfort of their home with no restriction to the number of parties present. In a recent study, patients participated in a PC-ILD collaborative pilot program with a telemedicine option. Patients and caregivers reported improved symptom management, better understanding of illness, and completion of advance care planning.34
Strengths of this study include data from ILD providers at many different institutions across the United States and a high overall survey response rate. The number of respondents was higher than in prior similar studies.35 Our study explores baseline knowledge and understanding of PC. Additionally, we delve deeply into the concept of limited resources as a barrier to PC referral and characterize access to inpatient and outpatient PC services by geographic proximity.
Several limitations of the study should be noted. We did not use a validated questionnaire, and the survey was not tested prior to dissemination. Participation in the study was voluntary without compensation, and this may select for a group of individuals more interested in the survey topic. The greatest number of respondents were physicians, and few respondents were respiratory therapists. Notably, information obtained in this study is self-reported and may not reflect how participants actually practice. Additionally, this questionnaire was disseminated to US-based providers who work at PFF-designated care centers to understand PC practices and needs within one specific organization. Therefore, data from this questionnaire may not reflect a global perspective on the subject. Many prior studies have been conducted in the United Kingdom, and viewpoints may differ based on different health care models in each country. For data obtained on PC availability by PFF Care Center site, some of the outpatient services may be directed solely at patients with underlying malignancy and may not be available to the population with ILD. Additional barriers and facilitators to PC access for patients with ILD require further study.
This national survey sheds light on current self-reported practices and perspectives of ILD providers across the PFF CCN. Although ILD providers reassuringly demonstrate knowledge and interest in PC involvement, no current system exists to facilitate and monitor response to referral. Potential next steps to improve PC delivery to the patient population with ILD include the following: (1) development and dissemination of educational materials, including clear instructions for how to determine local PC availability; (2) guidelines delineating optimal timing for referral to PC; (3) collaboration between PC and ILD providers, ideally through a multidisciplinary team approach to care; and (4) standardization of instruments used to assess symptom burden and quality of life across institutions.
Interpretation
This study identified several barriers to the provision of PC to patients with ILD: perceived lack of local access to PC, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery. Additionally, there is a lack of consistency in use of instruments to assess symptom management and overall HRQOL, and most are not validated in the population with ILD. This hinders the ability to compare effects of interventions across institutions. Future research is desperately needed to address barriers to the provision of PC to enhance access to a critical service in the management and care of patients with ILD.
Take-home Points.
Study Question: What are the current perspectives of palliative care (PC) in interstitial lung disease (ILD) providers, and what is the availability of PC in ILD specialty centers?
Results: Most providers exhibit knowledge regarding PC and agree with PC for patients with ILD, but optimal timing of referral remains unclear.
Interpretation: Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery.
Acknowledgments
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."
Contributor Information
Rebecca A. Gersten, Email: rgerste4@jhu.edu.
Pulmonary Fibrosis Foundation:
Divya Patel, Timothy P.M. Whelan, Traci Adams, Janell Reichuber, Tonya Russell, Heather Bachert, Tracy R. Luckhardt, Lake Morrison, Jane E. Dematte, Ria Edwina Gripaldo, Michael Henderson, Krishna Thavarajah, and Rade Tomic
Supplementary Data
References
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