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and indicates that early, integrated palliative care should be a priority, according to the finding of a survey study.
“Patients with IPF suffer from exceptionally low [health-related quality of life] together with severe breathlessness and fatigue already two years before death. In addition, physical and emotional well-being further deteriorates near death concurrently with escalating overall symptom burden,” wrote Kaisa Rajala, MD, and her colleagues at Helsinki University Hospital.
They conducted a substudy of patients in the larger FinnishIPF study to assess health-related quality of life (HRQOL) and symptom burden in the period before death. Among 300 patients invited to participate, 247 agreed. Patient disease and sociodemographic data were collected from the FinnishIPF records and the study group completed questionnaires five times at 6 month intervals. The study began in April 2015 and continued until August 2017, by which time 92 (37%) of the patients had died (BMC Pulmonary Medicine 2018;18:172; doi: 0.1186/s12890-018-0738-x).
The investigators used self-reporting tools to look at HRQOL and symptom burden: RAND 36-item Health Survey (RAND-36), the Modified Medical Research and Council Dyspnea Scale (MMRC), the Modified Edmonton Symptom Assessment Scale (ESAS), and the Numeric Rating Scale (NRS).
About 35% of these patients were being treated with antifibrotic medication. Most of the patients had comorbidities, with cardiovascular disease being the most common.
The dimensions of HRQOL studied were physical function, general health, vitality, mental health, social function, and bodily pain. These patients experienced a gradual impairment in HRQOL similar to that of patients with chronic obstructive pulmonary disease, but with a pronounced, rapid deterioration beginning in the last 2 years of life.
The symptom burden also intensified in the last 2 years of life and ramped up significantly in the last 6 months before death. NRS scores are on a scale of 0-10, from no symptoms to worst symptoms. In most clinical situations, NRS scores equal to greater than 4 trigger more comprehensive symptom assessment. The scores for symptoms for these patients during the last 6 months were dyspnea, 7.1 (standard deviation 2.8); tiredness, 6.0 (SD 2.5), cough, 5.0 (SD 3.5), pain with movement, 3.9 (SD 3.1), insomnia, 3.9 (SD 2.9), anxiety, 3.9 (SD 2.9), and depression, 3.6 (SD 3.1).
Investigators noted the steep change in the proportion of patients with MMRC scores greater than or equal to 3 (needing to stop walking after approximately 100 m or a few minutes because of breathlessness) beginning in the last 2 years of life.
The study limitations are its relatively small size, the self-reported data, and the lack of lung function measurements in most patients in the last 6 months of life.
The findings point to the urgent need for early palliative care in IPF patients, the investigators concluded. They noted that the sharp decline in HRQOL is similar to that seen in lung cancer patients, in contrast to the more gradual trend seen in COPD patients.
But there are common benefits of an early palliative program for all of these patients, they stressed. “Early integrated palliative care for patients with lung cancer has shown substantial benefits, such as lower depression scores, higher HRQOL, better communication of end-of-life care preferences, less aggressive care at the end of life, and longer overall survival. Similarly, a randomized trial demonstrated better control of dyspnea and a survival benefit with integrated palliative care in patients with COPD and interstitial lung disease. In addition to cancer patients, early integrated palliative care may reduce end-of-life acute care utilization, and allow patients with IPF to die in their preferred locations. Integrated palliative care in IPF patients seems to lower respiratory-related emergency room visits and hospitalizations and may allow more patients to die at home.”
The study was funded by The Academy of Finland and various Finnish nonprofit organizations funded the study.
SOURCE: Rajala K et al. BMC Pulm Med. 2018;18:172. doi: 0.1186/s12890-018-0738-x.
and indicates that early, integrated palliative care should be a priority, according to the finding of a survey study.
“Patients with IPF suffer from exceptionally low [health-related quality of life] together with severe breathlessness and fatigue already two years before death. In addition, physical and emotional well-being further deteriorates near death concurrently with escalating overall symptom burden,” wrote Kaisa Rajala, MD, and her colleagues at Helsinki University Hospital.
They conducted a substudy of patients in the larger FinnishIPF study to assess health-related quality of life (HRQOL) and symptom burden in the period before death. Among 300 patients invited to participate, 247 agreed. Patient disease and sociodemographic data were collected from the FinnishIPF records and the study group completed questionnaires five times at 6 month intervals. The study began in April 2015 and continued until August 2017, by which time 92 (37%) of the patients had died (BMC Pulmonary Medicine 2018;18:172; doi: 0.1186/s12890-018-0738-x).
The investigators used self-reporting tools to look at HRQOL and symptom burden: RAND 36-item Health Survey (RAND-36), the Modified Medical Research and Council Dyspnea Scale (MMRC), the Modified Edmonton Symptom Assessment Scale (ESAS), and the Numeric Rating Scale (NRS).
About 35% of these patients were being treated with antifibrotic medication. Most of the patients had comorbidities, with cardiovascular disease being the most common.
The dimensions of HRQOL studied were physical function, general health, vitality, mental health, social function, and bodily pain. These patients experienced a gradual impairment in HRQOL similar to that of patients with chronic obstructive pulmonary disease, but with a pronounced, rapid deterioration beginning in the last 2 years of life.
The symptom burden also intensified in the last 2 years of life and ramped up significantly in the last 6 months before death. NRS scores are on a scale of 0-10, from no symptoms to worst symptoms. In most clinical situations, NRS scores equal to greater than 4 trigger more comprehensive symptom assessment. The scores for symptoms for these patients during the last 6 months were dyspnea, 7.1 (standard deviation 2.8); tiredness, 6.0 (SD 2.5), cough, 5.0 (SD 3.5), pain with movement, 3.9 (SD 3.1), insomnia, 3.9 (SD 2.9), anxiety, 3.9 (SD 2.9), and depression, 3.6 (SD 3.1).
Investigators noted the steep change in the proportion of patients with MMRC scores greater than or equal to 3 (needing to stop walking after approximately 100 m or a few minutes because of breathlessness) beginning in the last 2 years of life.
The study limitations are its relatively small size, the self-reported data, and the lack of lung function measurements in most patients in the last 6 months of life.
The findings point to the urgent need for early palliative care in IPF patients, the investigators concluded. They noted that the sharp decline in HRQOL is similar to that seen in lung cancer patients, in contrast to the more gradual trend seen in COPD patients.
But there are common benefits of an early palliative program for all of these patients, they stressed. “Early integrated palliative care for patients with lung cancer has shown substantial benefits, such as lower depression scores, higher HRQOL, better communication of end-of-life care preferences, less aggressive care at the end of life, and longer overall survival. Similarly, a randomized trial demonstrated better control of dyspnea and a survival benefit with integrated palliative care in patients with COPD and interstitial lung disease. In addition to cancer patients, early integrated palliative care may reduce end-of-life acute care utilization, and allow patients with IPF to die in their preferred locations. Integrated palliative care in IPF patients seems to lower respiratory-related emergency room visits and hospitalizations and may allow more patients to die at home.”
The study was funded by The Academy of Finland and various Finnish nonprofit organizations funded the study.
SOURCE: Rajala K et al. BMC Pulm Med. 2018;18:172. doi: 0.1186/s12890-018-0738-x.
and indicates that early, integrated palliative care should be a priority, according to the finding of a survey study.
“Patients with IPF suffer from exceptionally low [health-related quality of life] together with severe breathlessness and fatigue already two years before death. In addition, physical and emotional well-being further deteriorates near death concurrently with escalating overall symptom burden,” wrote Kaisa Rajala, MD, and her colleagues at Helsinki University Hospital.
They conducted a substudy of patients in the larger FinnishIPF study to assess health-related quality of life (HRQOL) and symptom burden in the period before death. Among 300 patients invited to participate, 247 agreed. Patient disease and sociodemographic data were collected from the FinnishIPF records and the study group completed questionnaires five times at 6 month intervals. The study began in April 2015 and continued until August 2017, by which time 92 (37%) of the patients had died (BMC Pulmonary Medicine 2018;18:172; doi: 0.1186/s12890-018-0738-x).
The investigators used self-reporting tools to look at HRQOL and symptom burden: RAND 36-item Health Survey (RAND-36), the Modified Medical Research and Council Dyspnea Scale (MMRC), the Modified Edmonton Symptom Assessment Scale (ESAS), and the Numeric Rating Scale (NRS).
About 35% of these patients were being treated with antifibrotic medication. Most of the patients had comorbidities, with cardiovascular disease being the most common.
The dimensions of HRQOL studied were physical function, general health, vitality, mental health, social function, and bodily pain. These patients experienced a gradual impairment in HRQOL similar to that of patients with chronic obstructive pulmonary disease, but with a pronounced, rapid deterioration beginning in the last 2 years of life.
The symptom burden also intensified in the last 2 years of life and ramped up significantly in the last 6 months before death. NRS scores are on a scale of 0-10, from no symptoms to worst symptoms. In most clinical situations, NRS scores equal to greater than 4 trigger more comprehensive symptom assessment. The scores for symptoms for these patients during the last 6 months were dyspnea, 7.1 (standard deviation 2.8); tiredness, 6.0 (SD 2.5), cough, 5.0 (SD 3.5), pain with movement, 3.9 (SD 3.1), insomnia, 3.9 (SD 2.9), anxiety, 3.9 (SD 2.9), and depression, 3.6 (SD 3.1).
Investigators noted the steep change in the proportion of patients with MMRC scores greater than or equal to 3 (needing to stop walking after approximately 100 m or a few minutes because of breathlessness) beginning in the last 2 years of life.
The study limitations are its relatively small size, the self-reported data, and the lack of lung function measurements in most patients in the last 6 months of life.
The findings point to the urgent need for early palliative care in IPF patients, the investigators concluded. They noted that the sharp decline in HRQOL is similar to that seen in lung cancer patients, in contrast to the more gradual trend seen in COPD patients.
But there are common benefits of an early palliative program for all of these patients, they stressed. “Early integrated palliative care for patients with lung cancer has shown substantial benefits, such as lower depression scores, higher HRQOL, better communication of end-of-life care preferences, less aggressive care at the end of life, and longer overall survival. Similarly, a randomized trial demonstrated better control of dyspnea and a survival benefit with integrated palliative care in patients with COPD and interstitial lung disease. In addition to cancer patients, early integrated palliative care may reduce end-of-life acute care utilization, and allow patients with IPF to die in their preferred locations. Integrated palliative care in IPF patients seems to lower respiratory-related emergency room visits and hospitalizations and may allow more patients to die at home.”
The study was funded by The Academy of Finland and various Finnish nonprofit organizations funded the study.
SOURCE: Rajala K et al. BMC Pulm Med. 2018;18:172. doi: 0.1186/s12890-018-0738-x.
FROM BMC PULMONARY MEDICINE