Prognostic Awareness and Knowledge of Acute Exacerbation in Patients Dying with Interstitial Lung Disease: A Nationwide Survey

<b>Rationale:</b> Accurate prognostic awareness (PA) and knowledge of the disease are critical for decision-making regarding treatment options, advance care planning, and end-of-life care. However, they have not been investigated in patients with interstitial lung disease (ILD). <b>Objectives:</b> To determine the prevalence of patients with ILD who have accurate PA and/or knowledge of acute exacerbation and whether accurate PA is associated with end-of-life medical interventions and quality of dying and death. <b>Methods:</b> Through a nationwide bereavement survey, we examined the prevalence of accurate PA and knowledge of acute exacerbation (AE) in patients with ILD who died in acute general hospitals between January 2018 and February 2020. Patients' PA and knowledge were assessed from the perspective of the bereaved. We also quantified the quality of dying and death from the perspective of the bereaved using three scales-the Good Death Inventory, the Quality of Dying and Death questionnaire, and the single-item Quality of Dying and Death overall score-and obtained information on end-of-life interventions from the electronic medical record. We examined the associations of accurate PA with end-of-life interventions and quality of dying and death. <b>Results:</b> A total of 296 patients whose caregivers completed questionnaires were analyzed. One hundred sixty-three patients (55.1%; 95% confidence interval [CI], 49.2-60.8%) who died of ILD had accurate PA, and 138 (46.9%; 95% CI, 41.1-52.8%) recognized that their disease could have AE. Multivariate regression analysis showed that accurate PA was associated with significantly fewer intensive care unit deaths (odds ratio, 0.28; 95% CI, 0.10-0.82; <i>P</i> = 0.02). Patients with accurate PA had better quality of dying and death on all three scales. <b>Conclusions:</b> Approximately half of the patients who died of ILD did not recognize that their disease could lead to death or AE. The lower number of intensive care unit deaths and better quality of dying and death in patients with accurate PA suggest the potential benefits of obtaining accurate PA in patients with ILD.

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Publication Details

Journal
Annals of the American Thoracic Society
Published
2024-11-08
DOI
https://doi.org/10.1513/annalsats.202405-495oc
Citations
1
Primary Topic
Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis
Type
article
Field-Weighted Citation Impact
0.42

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article

Prognostic Awareness and Knowledge of Acute Exacerbation in Patients Dying with Interstitial Lung Disease: A Nationwide Survey

Koji Sakamoto, Yoshikazu Inoue, Koshi Yokomura, Shinya Ohkouchi et al.
1 citations
Annals of the American Thoracic Society
Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis
0.42
article

Prognostic Awareness and Knowledge of Acute Exacerbation in Patients Dying with Interstitial Lung Disease: A Nationwide Survey

Koji Sakamoto, Yoshikazu Inoue, Koshi Yokomura, Shinya Ohkouchi, Yuichiro Asai, Atsushi Miyamoto, Noboru Hattori, Yuki Shundo, Mitsunori Miyashita, Yuko Waseda, Yoshinori Tanino, Yasuhiro Kondoh, Tomoya Tateishi, Motoyasu Kato, Yoshinobu Matsuda, Susumu Sakamoto, Hiromi Tomioka, Noriho Sakamoto, Keisuke Tomii, Masaru Suzuki, Tatsuya Morita, Tomoaki Hoshino, Kazuhiro Yatera, Takafumi Koyauchi, Tomohiro Handa, Ryo Tachikawa, Hideki Yasui, Tomoyuki Fujisawa, Kazuki Anabuki, Keishi Sugino, Masato Kono, Manabu Ono, Yuichiro Kimura, Masanori Mori, Shusuke Yazawa, Shiro Imokawa, Norimichi Akiyama, Yoshinobu Saito, Takafumi Suda, Satoshi Hagimoto
article en
1 citations

Abstract

<b>Rationale:</b> Accurate prognostic awareness (PA) and knowledge of the disease are critical for decision-making regarding treatment options, advance care planning, and end-of-life care. However, they have not been investigated in patients with interstitial lung disease (ILD). <b>Objectives:</b> To determine the prevalence of patients with ILD who have accurate PA and/or knowledge of acute exacerbation and whether accurate PA is associated with end-of-life medical interventions and quality of dying and death. <b>Methods:</b> Through a nationwide bereavement survey, we examined the prevalence of accurate PA and knowledge of acute exacerbation (AE) in patients with ILD who died in acute general hospitals between January 2018 and February 2020. Patients' PA and knowledge were assessed from the perspective of the bereaved. We also quantified the quality of dying and death from the perspective of the bereaved using three scales-the Good Death Inventory, the Quality of Dying and Death questionnaire, and the single-item Quality of Dying and Death overall score-and obtained information on end-of-life interventions from the electronic medical record. We examined the associations of accurate PA with end-of-life interventions and quality of dying and death. <b>Results:</b> A total of 296 patients whose caregivers completed questionnaires were analyzed. One hundred sixty-three patients (55.1%; 95% confidence interval [CI], 49.2-60.8%) who died of ILD had accurate PA, and 138 (46.9%; 95% CI, 41.1-52.8%) recognized that their disease could have AE. Multivariate regression analysis showed that accurate PA was associated with significantly fewer intensive care unit deaths (odds ratio, 0.28; 95% CI, 0.10-0.82; <i>P</i> = 0.02). Patients with accurate PA had better quality of dying and death on all three scales. <b>Conclusions:</b> Approximately half of the patients who died of ILD did not recognize that their disease could lead to death or AE. The lower number of intensive care unit deaths and better quality of dying and death in patients with accurate PA suggest the potential benefits of obtaining accurate PA in patients with ILD.

Annals of the American Thoracic SocietyVol. 22(3)
Kurume University (JP), University of Fukui (JP), Hiroshima University (JP), Tokyo Medical and Dental University (JP), Toho University (JP), Fukushima Medical University (JP), Sapporo Medical University (JP), University of Occupational and Environmental Health Japan (JP), Tohoku University (JP), Hokkaido University (JP), Kyoto University (JP), Hamamatsu University School of Medicine (JP), Fukuoka University (JP), Juntendo University (JP), Kochi Medical School Hospital (JP), Seirei Mikatabara General Hospital (JP), Toho University Omori Medical Center (JP), Iwata City Hospital (JP), Tsuyama Chuo Hospital (JP), Seirei Hamamatsu General Hospital (JP), Fujieda Municipal General Hospital (JP), Kobe City Medical Center West Hospital (JP), Seirei Social Welfare Community (JP), Sendai Shakai Hoken Hospital (JP), Tosei General Hospital (JP), NHO Kinki Chuo Chest Medical Center (JP), Kobe City Medical Center General Hospital (JP), Sendai Kousei Hospital (JP), Toranomon Hospital (JP), Nagasaki University (JP), Nagoya University (JP), Kōchi University (JP), Nippon Medical School (JP)
Ministry of Health, Labour and Welfare
Openalex Percentile: Top 31%
Interstitial Lung Diseases and Idiopathic Pulmonary Fibrosis
0.42
DOISourceOpenAlex
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