ORIGINAL RESEARCH Symptom Burden of Chronic Lung Disease Compared with Lung Cancer at Time of Referral for Palliative Care Consultation Nicholas G. Wysham1,2,3, Christopher E. Cox1,3, Steven P. Wolf2,4, and Arif H. Kamal2,5 1
Division of Pulmonary and Critical Care Medicine and 5Division of Medical Oncology, Department of Medicine, 3Duke Program to Support People and Enhance Recovery (ProSPER), and 4Department of Biostatistics and Bioinformatics, Duke University, Durham, North Carolina; and 2Center for Learning Healthcare, Duke Clinical Research Institute, Durham, North Carolina ORCID ID: 0000-0003-1302-6296 (N.G.W.).
Abstract Rationale: A growing evidence base supports provision of palliative care services alongside life-prolonging care. Whereas palliative care processes have been implemented widely in the care of patients with lung cancer, the same is not true for patients with chronic, progressive lung disease. Objectives: To compare the symptom burden of chronic lung disease with that of lung cancer at the time of initial palliative care consultation. Methods: Data were abstracted from the Carolinas Palliative Care Consortium’s Quality Data Collection Tool, an electronic database used by seven academic and community palliative care practices in multiple states for quality improvement purposes. We analyzed data derived from first palliative care encounters collected during a 2-year period, including the primary diagnosis of chronic lung disease or lung cancer, unresolved symptoms, setting of initial palliative care encounter, Palliative Performance Scale status, and on that basis we estimated prognosis for survival. We compared key clinical variables between chronic lung disease and lung cancer using Kruskal–Wallis and x2 tests.
Measurements and Main Results: We identified 152 patients with lung cancer and 86 patients with chronic lung disease. Of the total sample, 53% were women and 87% were white. Patients with chronic lung disease were more likely than those with lung cancer to have the initial palliative care encounter occur in the intensive care unit (17% vs. 6%; P = 0.005) and less likely as an outpatient (20% vs. 56%; P , 0.0001). Patients with chronic lung disease were also less likely to have a high Palliative Performance Scale status (14% vs. 30%; P = 0.009) but more likely to have an estimated prognosis for survival longer than 6 months (51% vs. 28%; P = 0.002). The most prevalent symptoms were dyspnea (55% vs. 42%) and pain (40% vs. 52%), neither of which differed between groups (P = 0.08). Conclusions: Patients with chronic lung disease have symptom burdens similar to those of patients with lung cancer at the time of first palliative care encounter. Given the population burden of chronic lung disease and limitations in the palliative care workforce, attention should be focused on ensuring that pulmonologists are prepared to assess and manage the common palliative care needs of patients with chronic lung disease. Keywords: chronic obstructive pulmonary disease; dyspnea; palliative care
(Received in original form March 30, 2015; accepted in final form July 10, 2015 ) Supported by The Duke Endowment. Author Contributions: N.G.W. and A.H.K.: study design and concept; N.G.W., S.P.W., A.H.K., and C.E.C.: manuscript writing and review; A.H.K.: supervised data collection and acquired funding; N.G.W., S.P.W., C.E.C., and A.H.K.: final approval of the manuscript for publication; and N.G.W.: accountable for all aspects of the work. Correspondence and requests for reprints should be addressed to Nicholas G. Wysham, M.D., Division of Pulmonary and Critical Care Medicine, Duke University Medical Center, Box DUMC 2634, Durham, NC 27710. E-mail: [email protected] Ann Am Thorac Soc Vol 12, No 9, pp 1294–1301, Sep 2015 Copyright © 2015 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201503-180OC Internet address: www.atsjournals.org
Chronic lung diseases, most commonly chronic obstructive pulmonary disease (COPD) and interstitial lung disease, are the third leading cause of death in the United States (1). Despite declining rates 1294
of smoking (2), the prevalence of COPD remains unchanged at an estimated 15 million people in the United States (3). Unfortunately, few therapies are proven to improve survival in chronic lung disease.
Thus, the major clinical focus of pulmonologists and their teams is to maintain quality of life (QOL) and function (4), essentially in line with supportive and palliative care principles.
AnnalsATS Volume 12 Number 9 | September 2015
ORIGINAL RESEARCH Many patients with advanced chronic lung disease and their caregivers experience significant physical and psychological distress, indicating unmet palliative care needs (5, 6). Additionally, patients with COPD have a high rate of health care use at the end of life (7, 8), including frequent emergency room visits, hospitalizations, and prolonged mechanical ventilation, and many ultimately die in the hospital or other institutional settings (9, 10). This is despite evidence demonstrating that patients with chronic lung disease wish to avoid intense medical care at the end of life, indicating the potential for improvement in advanced care planning before the worsening of disease. Current expert recommendations advocating for palliative care in chronic lung disease focus on end-of-life care (11, 12), but symptom-focused care and strategies for incorporating palliative care services more holistically in the treatment patients with chronic lung disease are not widespread. By contrast, the integration of palliative care has translated into standards advocating routine assessments of palliative care needs at every oncology visit, frequent use of supportive services, and evidence supporting early integration of palliative care alongside lifeprolonging therapies (13). Lung cancer patients have the benefit of guidelines and care processes that support frequent contact with primary palliative care providers (medical and radiation oncologists) (14) as well as early involvement in specialty palliative care (15). In comparison, patients with chronic lung disease have comparatively infrequent contact with specialty providers and significant fragmentation of care, particularly toward the end of life (16). This is perhaps due to the chronic relapsing–remitting nature of their disease and related uncertainty around (and misplaced emphasis on) prognosis (17, 18), but it could also reflect the lack of an integrative care model similar to that offered to patients with lung cancer. As a result, patients with chronic lung disease are likely to be at high risk for having a significant burden of unmet palliative needs. We hypothesized that, in a representative sample derived from direct clinical care in both community and academic practices, patients with chronic lung disease are referred to palliative care with a symptom burden at the time of first palliative care consultation as great as or greater than that
for patients with lung cancer. We aimed to test this hypothesis and to examine whether the quality of palliative care services differs by diagnosis. By examining these factors, our overall goal was to highlight opportunities for improving the symptom management of patients with chronic lung disease. Some of the results of these studies have been reported previously in the form of an abstract (19).
Methods Data
We analyzed data from the Carolinas Palliative Care Consortium’s Quality Data Collection Tool (QDACT), a multisite learning health system in palliative care. A learning health system is an emerging infrastructure that promotes rapid implementation of evidence and best practice, as well as critical evaluation of clinical data for quality improvement and promotion of generalizable knowledge (Figure 1) (20, 21). In a learning health system, data inputs are carefully designed to meet multiple aims: enhancing clinical care, quality improvement, and generalizable medical knowledge. This requires a balance between research quality–structured data and clinical usability and feasibility. QDACT continues to add sites; at time of this analysis, QDACT was being used by three academic and four community consultative palliative care practices across the United States, predominantly (though not exclusively) in
the southeastern United States. Hospice encounters are not part of QDACT. At each encounter, palliative care providers document in QDACT patient- or proxy-reported data on distress of 10 symptoms using the McCorkle Symptom Distress Scale (22). Palliative care providers also record baseline demographics, primary diagnosis for palliative care consultation, reason for consultation, tolerability of symptoms, QOL, performance status, estimated prognosis for survival, and palliative services and interventions provided. The Duke University Institutional Review Board approved this analysis. Measures
The included patients were those referred for palliative care consultations to community and academic practices participating in the Carolinas Palliative Care Consortium whose primary diagnosis for palliative care consultation was either lung cancer (small-cell lung cancer, non–small cell lung cancer, or not specified) or chronic lung disease (COPD or pulmonary fibrosis). In addition to primary diagnosis, we collected data on age, sex, race, location of initial consultation, advanced care– planning activities completed, discharge from hospital within the last 30 days, palliative performance status, the single 11-point general QOL item from the McGill Quality of Life Questionnaire (23), and palliative care provider’s estimated prognosis for survival.
Research Evidence and Best Practices
Evaluation of outcomes
Patient
QI and transformation of subsequent care delivery
Information-rich, patient-focused data
Data aggregation, evidence generation
Patient-Centered Rapid Learning Health System Figure 1. The cycle of data in a patient-centered learning health system. Patient-level data are aggregated to promote rapid implementation of evidence, data-driven quality improvement (QI), and generalizable knowledge.
Wysham, Cox, Wolf, et al.: Symptoms of Chronic Lung Disease Compared with Lung Cancer
1295
ORIGINAL RESEARCH We quantified symptoms documented by palliative care providers using patient- or proxy-reports using the McCorkle Symptom Distress Scale (dyspnea, pain, fatigue, anorexia, anxiety, insomnia, nausea, constipation, depression, and dysphagia) (22). Each symptom was classified as present if endorsed and as absent if the symptom was not experienced, the respondent was unable to respond, or the value was missing from the database. As a measure of quality of palliative care services, we defined a treatment gap as a symptom of at least moderate severity without documentation of an associated intervention to address this symptom. For this measure, we included all symptoms except fatigue and depression, because there are no acute palliative interventions for these symptoms. Statistical Analysis
Descriptive statistics were used to describe cohort members and their characteristics. By cohort (chronic lung disease vs. lung cancer), we compared continuous variables with a Kruskal–Wallis test (so as not to assume normally distributed population data) and discrete variables with x2 tests. Fisher’s exact test was used if the expected value of a given cell was less than 5. When the significance test for distribution was significant at P , 0.05, we used a x2 test for pairwise comparisons of variables whose point estimates differed in clinically significant ways between groups, specifically location of initial palliative care consultation in the ICU or outpatient, rate of high performance status, and prognosis for survival longer than 6 months. We plotted grouped bar graphs for both variables above and used a Bonferroni correction to adjust our a error for multiple comparisons. To further understand the prevalence of dyspnea between cohorts and its interaction with inpatient status, each group was also stratified according to inpatient status and the prevalence of moderate or severe dyspnea was compared. All analyses were performed using SAS statistical software version 9.4 (SAS Institute, Cary, NC).
either chronic lung disease or lung cancer between October 2012 to September 2014. The sample comprised 152 patients with lung cancer and 86 with chronic lung disease (Table 1). Patients with chronic lung disease were typically older than patients with lung cancer (median age, 75 vs. 70 yr; P = 0.0001), but the demographics of the groups were otherwise similar. Of the combined group, 53% were women and 87% were Caucasian. The groups did not differ by sex or race. QOL was similar between groups, with 54% of all patients reporting fair QOL. Among the patients with lung cancer, 30% had high performance status compared with 14% of patients with chronic lung disease (P = 0.009). Compared with patients with lung cancer, patients with chronic lung disease were more likely to have had at least one hospital discharge within 30 days (61% vs. 32%; P , 0.0001) and less likely to have had their first consultation as an outpatient (20% vs. 56%; P , 0.0001). Overall, 98% of patients had their code status assessed at their first palliative care visit. This percentage did not differ between groups. Patients with chronic lung disease were nearly twice as likely to have a do not resuscitate (DNR) order status recorded (62% vs. 32%; P , 0.0001), but 51% of patients with chronic lung disease had a prognosis of survival longer than 6 months compared with 28% for patients with lung cancer (P = 0.002). Symptom Burden
Moderate to severe dyspnea was prevalent and statistically similar between patients in the two groups (54% in chronic lung disease vs. 41% in lung cancer; P = 0.08) (Figure 2) and was also similar between inpatients and outpatients (Table 2). Moderate to severe pain was also statistically similar between groups (38% in chronic lung disease vs. 51% in lung cancer; P = 0.08). We found that patients with lung cancer had statistically higher levels of insomnia and nausea after we controlled for multiple comparisons.
Results Quality of Palliative Care Patient Characteristics
We identified 238 patients referred for palliative care with a primary diagnosis of 1296
Treatment gaps were uncommon and occurred at similar rates between groups; none of the differences were statistically
significant. Treatment gaps for dyspnea occurred only in the outpatient setting (1 [2.2%] of 46 patients with chronic lung disease vs. 4 [6.5%] of 62 patients with lung cancer; P = 0.39). Moderate to severe pain was untreated in 3 (9.1%) of 33 patients with chronic lung disease compared with 1 (1.3%) of 77 patients with lung cancer (P = 0.08).
Discussion We demonstrate that, in a multisite community and academic learning health system in palliative care, patients with chronic lung disease referred for palliative care have a prevalence of moderate to severe symptom burden similar to that of patients with lung cancer at the time of first palliative care encounter. The most prevalent symptoms in both groups were dyspnea and pain, each occurring in roughly half of the patients in both groups. Our study is unique in that it involved the largest sample in which symptom burdens were compared between patients with chronic lung disease and patients with lung cancer assessed at the point of care, as well as in its use of a learning health system infrastructure. Prior work with the use of other methods has demonstrated that the symptom burden and illness experience of patients with chronic lung disease is as bad as or worse than that of patients with lung cancer. In a UK postbereavement survey of caregivers, patients who had died as a result of chronic lung disease were found to have greater burdens of dyspnea for longer than those who had died as a result of lung cancer. Patients with chronic lung disease also accessed fewer palliative care services than those with lung cancer (24). Also in the United Kingdom, Gore and coworkers compared QOL of 50 patients with severe COPD and 50 patients with non–small cell lung cancer and found QOL on a variety of measures was poorer in the COPD group (25). Habraken and colleagues added to this dataset with patients from the Netherlands and corroborated these findings (26). In the United States, patients with COPD, congestive heart failure, and cancer (not only lung cancer) were compared using in-home interviews, and the results showed that patients with
AnnalsATS Volume 12 Number 9 | September 2015
ORIGINAL RESEARCH Table 1. Demographics and disease characteristics of study cohort Chronic Respiratory Disease (n = 86)
Lung Cancer (n = 152)
Primary diagnosis COPD 71 (82.6%) — Pulmonary fibrosis 15 (17.4%) — Non–small cell lung cancer — 132 (86.8%) Small cell lung cancer — 20 (13.2%) Median age, yr (Q1–Q3) 75 (51.2–94.7) 69.6 (42.3–89.3) Female sex 48 (58.5%) 74 (50.0%) Missing 4 4 Race Black 7 (8.2%) 22 (14.6%) White 78 (91.8%) 127 (84.1%) Other 0 (0.0%) 2 (1.3%) Missing 1 1 Advance care–planning activities completed before or during initial palliative care visit DNR/CPR 53 (62%) 48 (32%) Living will 51 (71.8%) 71 (66.4%) Surrogate 71 (88.8%) 106 (85.5%) Discharged from hospital within 30 days No 30 (39.0%) 89 (67.9%) Yes 47 (61.0%) 42 (32.1%) Missing 9 21 Location of consultation Outpatient 17 (19.8%) 85 (55.9%) Hospital general ward 16 (18.6%) 36 (23.7%) Hospital ICU 15 (17.4%) 9 (5.9%) Long-term care 8 (9.3%) 2 (1.3%) Home 7 (8.1%) 9 (5.9%) Rehabilitation facility 17 (19.8%) 4 (2.6%) Acute palliative care unit 3 (3.5%) 3 (2.0%) Other 3 (3.5%) 4 (2.6%) Palliative Performance Scale Low 16 (21.6%) 18 (14.1%) Medium 48 (64.9%) 72 (56.3%) High 10 (13.5%) 38 (29.7%) Missing 12 24 General QOL Poor 9 (15.5%) 27 (25.0%) Fair 34 (58.6%) 56 (51.9%) Good 15 (25.9%) 25 (23.1%) Missing 28 44 Palliative care provider’s estimation of prognosis ,7 days 8 (12.7%) 4 (3.4%) ,4 wk 4 (6.3%) 6 (5.2%) 1–6 mo 19 (30.2%) 73 (62.9%) .6 mo 32 (50.8%) 32 (27.6%) Other 0 (0.0%) 1 (0.9%) Missing 23 36
Total (N = 238)
71 15 132 20 71.4 122
(29.8%) (6.3%) (55.5%) (8.4%) (42.3–94.7) (53.0%) 8
P Value
0.0001 0.2141 0.1951
29 (12.3%) 205 (86.9%) 2 (0.8%) 2 101 (42%) 122 (68.5%) 177 (86.8%) 119 (57.2%) 89 (42.8%) 30 102 52 24 10 16 21 6 7
(42.9%) (21.8%) (10.1%) (4.2%) (6.7%) (8.8%) (2.5%) (2.9%)
,0.0001
,0.0001
,0.0001 ,0.0001 0.005
0.0255 34 (16.8%) 120 (59.4%) 48 (23.8%) 36
0.009 0.3681
36 (21.7%) 90 (54.2%) 40 (24.1%) 72 0.0004 12 10 92 64 1
(6.7%) (5.6%) (51.4%) (35.8%) (0.6%) 59
0.002
Definition of abbreviations: COPD = chronic obstructive pulmonary disease; CPR = cardiopulmonary resuscitation; DNR = do not resuscitate; ICU = intensive care unit; Q1–Q3 = interquartile range; QOL = quality of life.
COPD had the highest prevalence of moderate to severe dyspnea (27). In a similar study, researchers found these patients have similar illness experiences with an estimated 2-year prognosis for survival (28). The similarity of prior findings based on more traditional research methods confirms the validity of our data derived through routine clinical practice. The choice of comparisons also differs between these studies in important ways. In
our study, we compared symptoms at the time of first palliative care encounter rather than a similar time point in their disease course, such as at death or with a similar prognosis for survival. This is sensible in part because prognosticating survival in chronic lung disease is notoriously difficult; most physiologic variables have a poor correlation to symptom burden or prognosis. Most important, though, is that comparing needs at the first palliative care encounter allows for comparisons in
health care delivery and suggests ways in which health services can be organized to best meet these needs. In addition to having an equivalent symptom burden, our data suggest that palliative care is involved for patients with chronic lung disease less proactively than it is for patients with lung cancer. This is most strongly supported by the finding that the majority of first palliative care visits for lung cancer occur in the outpatient setting, whereas the most
Wysham, Cox, Wolf, et al.: Symptoms of Chronic Lung Disease Compared with Lung Cancer
1297
Percentage of Patients reporting Moderate/Severe Symptom Severity
ORIGINAL RESEARCH
Chronic Lung Disease Lung Cancer 40
* = P value
Division of Pulmonary and Critical Care Medicine and 5Division of Medical Oncology, Department of Medicine, 3Duke Program to Support People and Enhance Recovery (ProSPER), and 4Department of Biostatistics and Bioinformatics, Duke University, Durham, North Carolina; and 2Center for Learning Healthcare, Duke Clinical Research Institute, Durham, North Carolina ORCID ID: 0000-0003-1302-6296 (N.G.W.).
Abstract Rationale: A growing evidence base supports provision of palliative care services alongside life-prolonging care. Whereas palliative care processes have been implemented widely in the care of patients with lung cancer, the same is not true for patients with chronic, progressive lung disease. Objectives: To compare the symptom burden of chronic lung disease with that of lung cancer at the time of initial palliative care consultation. Methods: Data were abstracted from the Carolinas Palliative Care Consortium’s Quality Data Collection Tool, an electronic database used by seven academic and community palliative care practices in multiple states for quality improvement purposes. We analyzed data derived from first palliative care encounters collected during a 2-year period, including the primary diagnosis of chronic lung disease or lung cancer, unresolved symptoms, setting of initial palliative care encounter, Palliative Performance Scale status, and on that basis we estimated prognosis for survival. We compared key clinical variables between chronic lung disease and lung cancer using Kruskal–Wallis and x2 tests.
Measurements and Main Results: We identified 152 patients with lung cancer and 86 patients with chronic lung disease. Of the total sample, 53% were women and 87% were white. Patients with chronic lung disease were more likely than those with lung cancer to have the initial palliative care encounter occur in the intensive care unit (17% vs. 6%; P = 0.005) and less likely as an outpatient (20% vs. 56%; P , 0.0001). Patients with chronic lung disease were also less likely to have a high Palliative Performance Scale status (14% vs. 30%; P = 0.009) but more likely to have an estimated prognosis for survival longer than 6 months (51% vs. 28%; P = 0.002). The most prevalent symptoms were dyspnea (55% vs. 42%) and pain (40% vs. 52%), neither of which differed between groups (P = 0.08). Conclusions: Patients with chronic lung disease have symptom burdens similar to those of patients with lung cancer at the time of first palliative care encounter. Given the population burden of chronic lung disease and limitations in the palliative care workforce, attention should be focused on ensuring that pulmonologists are prepared to assess and manage the common palliative care needs of patients with chronic lung disease. Keywords: chronic obstructive pulmonary disease; dyspnea; palliative care
(Received in original form March 30, 2015; accepted in final form July 10, 2015 ) Supported by The Duke Endowment. Author Contributions: N.G.W. and A.H.K.: study design and concept; N.G.W., S.P.W., A.H.K., and C.E.C.: manuscript writing and review; A.H.K.: supervised data collection and acquired funding; N.G.W., S.P.W., C.E.C., and A.H.K.: final approval of the manuscript for publication; and N.G.W.: accountable for all aspects of the work. Correspondence and requests for reprints should be addressed to Nicholas G. Wysham, M.D., Division of Pulmonary and Critical Care Medicine, Duke University Medical Center, Box DUMC 2634, Durham, NC 27710. E-mail: [email protected] Ann Am Thorac Soc Vol 12, No 9, pp 1294–1301, Sep 2015 Copyright © 2015 by the American Thoracic Society DOI: 10.1513/AnnalsATS.201503-180OC Internet address: www.atsjournals.org
Chronic lung diseases, most commonly chronic obstructive pulmonary disease (COPD) and interstitial lung disease, are the third leading cause of death in the United States (1). Despite declining rates 1294
of smoking (2), the prevalence of COPD remains unchanged at an estimated 15 million people in the United States (3). Unfortunately, few therapies are proven to improve survival in chronic lung disease.
Thus, the major clinical focus of pulmonologists and their teams is to maintain quality of life (QOL) and function (4), essentially in line with supportive and palliative care principles.
AnnalsATS Volume 12 Number 9 | September 2015
ORIGINAL RESEARCH Many patients with advanced chronic lung disease and their caregivers experience significant physical and psychological distress, indicating unmet palliative care needs (5, 6). Additionally, patients with COPD have a high rate of health care use at the end of life (7, 8), including frequent emergency room visits, hospitalizations, and prolonged mechanical ventilation, and many ultimately die in the hospital or other institutional settings (9, 10). This is despite evidence demonstrating that patients with chronic lung disease wish to avoid intense medical care at the end of life, indicating the potential for improvement in advanced care planning before the worsening of disease. Current expert recommendations advocating for palliative care in chronic lung disease focus on end-of-life care (11, 12), but symptom-focused care and strategies for incorporating palliative care services more holistically in the treatment patients with chronic lung disease are not widespread. By contrast, the integration of palliative care has translated into standards advocating routine assessments of palliative care needs at every oncology visit, frequent use of supportive services, and evidence supporting early integration of palliative care alongside lifeprolonging therapies (13). Lung cancer patients have the benefit of guidelines and care processes that support frequent contact with primary palliative care providers (medical and radiation oncologists) (14) as well as early involvement in specialty palliative care (15). In comparison, patients with chronic lung disease have comparatively infrequent contact with specialty providers and significant fragmentation of care, particularly toward the end of life (16). This is perhaps due to the chronic relapsing–remitting nature of their disease and related uncertainty around (and misplaced emphasis on) prognosis (17, 18), but it could also reflect the lack of an integrative care model similar to that offered to patients with lung cancer. As a result, patients with chronic lung disease are likely to be at high risk for having a significant burden of unmet palliative needs. We hypothesized that, in a representative sample derived from direct clinical care in both community and academic practices, patients with chronic lung disease are referred to palliative care with a symptom burden at the time of first palliative care consultation as great as or greater than that
for patients with lung cancer. We aimed to test this hypothesis and to examine whether the quality of palliative care services differs by diagnosis. By examining these factors, our overall goal was to highlight opportunities for improving the symptom management of patients with chronic lung disease. Some of the results of these studies have been reported previously in the form of an abstract (19).
Methods Data
We analyzed data from the Carolinas Palliative Care Consortium’s Quality Data Collection Tool (QDACT), a multisite learning health system in palliative care. A learning health system is an emerging infrastructure that promotes rapid implementation of evidence and best practice, as well as critical evaluation of clinical data for quality improvement and promotion of generalizable knowledge (Figure 1) (20, 21). In a learning health system, data inputs are carefully designed to meet multiple aims: enhancing clinical care, quality improvement, and generalizable medical knowledge. This requires a balance between research quality–structured data and clinical usability and feasibility. QDACT continues to add sites; at time of this analysis, QDACT was being used by three academic and four community consultative palliative care practices across the United States, predominantly (though not exclusively) in
the southeastern United States. Hospice encounters are not part of QDACT. At each encounter, palliative care providers document in QDACT patient- or proxy-reported data on distress of 10 symptoms using the McCorkle Symptom Distress Scale (22). Palliative care providers also record baseline demographics, primary diagnosis for palliative care consultation, reason for consultation, tolerability of symptoms, QOL, performance status, estimated prognosis for survival, and palliative services and interventions provided. The Duke University Institutional Review Board approved this analysis. Measures
The included patients were those referred for palliative care consultations to community and academic practices participating in the Carolinas Palliative Care Consortium whose primary diagnosis for palliative care consultation was either lung cancer (small-cell lung cancer, non–small cell lung cancer, or not specified) or chronic lung disease (COPD or pulmonary fibrosis). In addition to primary diagnosis, we collected data on age, sex, race, location of initial consultation, advanced care– planning activities completed, discharge from hospital within the last 30 days, palliative performance status, the single 11-point general QOL item from the McGill Quality of Life Questionnaire (23), and palliative care provider’s estimated prognosis for survival.
Research Evidence and Best Practices
Evaluation of outcomes
Patient
QI and transformation of subsequent care delivery
Information-rich, patient-focused data
Data aggregation, evidence generation
Patient-Centered Rapid Learning Health System Figure 1. The cycle of data in a patient-centered learning health system. Patient-level data are aggregated to promote rapid implementation of evidence, data-driven quality improvement (QI), and generalizable knowledge.
Wysham, Cox, Wolf, et al.: Symptoms of Chronic Lung Disease Compared with Lung Cancer
1295
ORIGINAL RESEARCH We quantified symptoms documented by palliative care providers using patient- or proxy-reports using the McCorkle Symptom Distress Scale (dyspnea, pain, fatigue, anorexia, anxiety, insomnia, nausea, constipation, depression, and dysphagia) (22). Each symptom was classified as present if endorsed and as absent if the symptom was not experienced, the respondent was unable to respond, or the value was missing from the database. As a measure of quality of palliative care services, we defined a treatment gap as a symptom of at least moderate severity without documentation of an associated intervention to address this symptom. For this measure, we included all symptoms except fatigue and depression, because there are no acute palliative interventions for these symptoms. Statistical Analysis
Descriptive statistics were used to describe cohort members and their characteristics. By cohort (chronic lung disease vs. lung cancer), we compared continuous variables with a Kruskal–Wallis test (so as not to assume normally distributed population data) and discrete variables with x2 tests. Fisher’s exact test was used if the expected value of a given cell was less than 5. When the significance test for distribution was significant at P , 0.05, we used a x2 test for pairwise comparisons of variables whose point estimates differed in clinically significant ways between groups, specifically location of initial palliative care consultation in the ICU or outpatient, rate of high performance status, and prognosis for survival longer than 6 months. We plotted grouped bar graphs for both variables above and used a Bonferroni correction to adjust our a error for multiple comparisons. To further understand the prevalence of dyspnea between cohorts and its interaction with inpatient status, each group was also stratified according to inpatient status and the prevalence of moderate or severe dyspnea was compared. All analyses were performed using SAS statistical software version 9.4 (SAS Institute, Cary, NC).
either chronic lung disease or lung cancer between October 2012 to September 2014. The sample comprised 152 patients with lung cancer and 86 with chronic lung disease (Table 1). Patients with chronic lung disease were typically older than patients with lung cancer (median age, 75 vs. 70 yr; P = 0.0001), but the demographics of the groups were otherwise similar. Of the combined group, 53% were women and 87% were Caucasian. The groups did not differ by sex or race. QOL was similar between groups, with 54% of all patients reporting fair QOL. Among the patients with lung cancer, 30% had high performance status compared with 14% of patients with chronic lung disease (P = 0.009). Compared with patients with lung cancer, patients with chronic lung disease were more likely to have had at least one hospital discharge within 30 days (61% vs. 32%; P , 0.0001) and less likely to have had their first consultation as an outpatient (20% vs. 56%; P , 0.0001). Overall, 98% of patients had their code status assessed at their first palliative care visit. This percentage did not differ between groups. Patients with chronic lung disease were nearly twice as likely to have a do not resuscitate (DNR) order status recorded (62% vs. 32%; P , 0.0001), but 51% of patients with chronic lung disease had a prognosis of survival longer than 6 months compared with 28% for patients with lung cancer (P = 0.002). Symptom Burden
Moderate to severe dyspnea was prevalent and statistically similar between patients in the two groups (54% in chronic lung disease vs. 41% in lung cancer; P = 0.08) (Figure 2) and was also similar between inpatients and outpatients (Table 2). Moderate to severe pain was also statistically similar between groups (38% in chronic lung disease vs. 51% in lung cancer; P = 0.08). We found that patients with lung cancer had statistically higher levels of insomnia and nausea after we controlled for multiple comparisons.
Results Quality of Palliative Care Patient Characteristics
We identified 238 patients referred for palliative care with a primary diagnosis of 1296
Treatment gaps were uncommon and occurred at similar rates between groups; none of the differences were statistically
significant. Treatment gaps for dyspnea occurred only in the outpatient setting (1 [2.2%] of 46 patients with chronic lung disease vs. 4 [6.5%] of 62 patients with lung cancer; P = 0.39). Moderate to severe pain was untreated in 3 (9.1%) of 33 patients with chronic lung disease compared with 1 (1.3%) of 77 patients with lung cancer (P = 0.08).
Discussion We demonstrate that, in a multisite community and academic learning health system in palliative care, patients with chronic lung disease referred for palliative care have a prevalence of moderate to severe symptom burden similar to that of patients with lung cancer at the time of first palliative care encounter. The most prevalent symptoms in both groups were dyspnea and pain, each occurring in roughly half of the patients in both groups. Our study is unique in that it involved the largest sample in which symptom burdens were compared between patients with chronic lung disease and patients with lung cancer assessed at the point of care, as well as in its use of a learning health system infrastructure. Prior work with the use of other methods has demonstrated that the symptom burden and illness experience of patients with chronic lung disease is as bad as or worse than that of patients with lung cancer. In a UK postbereavement survey of caregivers, patients who had died as a result of chronic lung disease were found to have greater burdens of dyspnea for longer than those who had died as a result of lung cancer. Patients with chronic lung disease also accessed fewer palliative care services than those with lung cancer (24). Also in the United Kingdom, Gore and coworkers compared QOL of 50 patients with severe COPD and 50 patients with non–small cell lung cancer and found QOL on a variety of measures was poorer in the COPD group (25). Habraken and colleagues added to this dataset with patients from the Netherlands and corroborated these findings (26). In the United States, patients with COPD, congestive heart failure, and cancer (not only lung cancer) were compared using in-home interviews, and the results showed that patients with
AnnalsATS Volume 12 Number 9 | September 2015
ORIGINAL RESEARCH Table 1. Demographics and disease characteristics of study cohort Chronic Respiratory Disease (n = 86)
Lung Cancer (n = 152)
Primary diagnosis COPD 71 (82.6%) — Pulmonary fibrosis 15 (17.4%) — Non–small cell lung cancer — 132 (86.8%) Small cell lung cancer — 20 (13.2%) Median age, yr (Q1–Q3) 75 (51.2–94.7) 69.6 (42.3–89.3) Female sex 48 (58.5%) 74 (50.0%) Missing 4 4 Race Black 7 (8.2%) 22 (14.6%) White 78 (91.8%) 127 (84.1%) Other 0 (0.0%) 2 (1.3%) Missing 1 1 Advance care–planning activities completed before or during initial palliative care visit DNR/CPR 53 (62%) 48 (32%) Living will 51 (71.8%) 71 (66.4%) Surrogate 71 (88.8%) 106 (85.5%) Discharged from hospital within 30 days No 30 (39.0%) 89 (67.9%) Yes 47 (61.0%) 42 (32.1%) Missing 9 21 Location of consultation Outpatient 17 (19.8%) 85 (55.9%) Hospital general ward 16 (18.6%) 36 (23.7%) Hospital ICU 15 (17.4%) 9 (5.9%) Long-term care 8 (9.3%) 2 (1.3%) Home 7 (8.1%) 9 (5.9%) Rehabilitation facility 17 (19.8%) 4 (2.6%) Acute palliative care unit 3 (3.5%) 3 (2.0%) Other 3 (3.5%) 4 (2.6%) Palliative Performance Scale Low 16 (21.6%) 18 (14.1%) Medium 48 (64.9%) 72 (56.3%) High 10 (13.5%) 38 (29.7%) Missing 12 24 General QOL Poor 9 (15.5%) 27 (25.0%) Fair 34 (58.6%) 56 (51.9%) Good 15 (25.9%) 25 (23.1%) Missing 28 44 Palliative care provider’s estimation of prognosis ,7 days 8 (12.7%) 4 (3.4%) ,4 wk 4 (6.3%) 6 (5.2%) 1–6 mo 19 (30.2%) 73 (62.9%) .6 mo 32 (50.8%) 32 (27.6%) Other 0 (0.0%) 1 (0.9%) Missing 23 36
Total (N = 238)
71 15 132 20 71.4 122
(29.8%) (6.3%) (55.5%) (8.4%) (42.3–94.7) (53.0%) 8
P Value
0.0001 0.2141 0.1951
29 (12.3%) 205 (86.9%) 2 (0.8%) 2 101 (42%) 122 (68.5%) 177 (86.8%) 119 (57.2%) 89 (42.8%) 30 102 52 24 10 16 21 6 7
(42.9%) (21.8%) (10.1%) (4.2%) (6.7%) (8.8%) (2.5%) (2.9%)
,0.0001
,0.0001
,0.0001 ,0.0001 0.005
0.0255 34 (16.8%) 120 (59.4%) 48 (23.8%) 36
0.009 0.3681
36 (21.7%) 90 (54.2%) 40 (24.1%) 72 0.0004 12 10 92 64 1
(6.7%) (5.6%) (51.4%) (35.8%) (0.6%) 59
0.002
Definition of abbreviations: COPD = chronic obstructive pulmonary disease; CPR = cardiopulmonary resuscitation; DNR = do not resuscitate; ICU = intensive care unit; Q1–Q3 = interquartile range; QOL = quality of life.
COPD had the highest prevalence of moderate to severe dyspnea (27). In a similar study, researchers found these patients have similar illness experiences with an estimated 2-year prognosis for survival (28). The similarity of prior findings based on more traditional research methods confirms the validity of our data derived through routine clinical practice. The choice of comparisons also differs between these studies in important ways. In
our study, we compared symptoms at the time of first palliative care encounter rather than a similar time point in their disease course, such as at death or with a similar prognosis for survival. This is sensible in part because prognosticating survival in chronic lung disease is notoriously difficult; most physiologic variables have a poor correlation to symptom burden or prognosis. Most important, though, is that comparing needs at the first palliative care encounter allows for comparisons in
health care delivery and suggests ways in which health services can be organized to best meet these needs. In addition to having an equivalent symptom burden, our data suggest that palliative care is involved for patients with chronic lung disease less proactively than it is for patients with lung cancer. This is most strongly supported by the finding that the majority of first palliative care visits for lung cancer occur in the outpatient setting, whereas the most
Wysham, Cox, Wolf, et al.: Symptoms of Chronic Lung Disease Compared with Lung Cancer
1297
Percentage of Patients reporting Moderate/Severe Symptom Severity
ORIGINAL RESEARCH
Chronic Lung Disease Lung Cancer 40
* = P value
