Daisuke Arai1,2, Takashi Sato1,3,4, Ichiro Nakachi1,2, Daisuke Fujisawa5,6, Mari Takeuchi7, Yasunori Sato8, Ichiro Kawada1, Hiroyuki Yasuda1, Shinnosuke Ikemura1, Hideki Terai1,9, Shigenari Nukaga1,10, Takashi Inoue11, Morio Nakamura12, Yoshitaka Oyamada10, Takeshi Terashima13, Koichi Sayama14, Fumitake Saito15, Fumio Sakamaki16, Katsuhiko Naoki4, Koichi Fukunaga1, Kenzo Soejima1,9. 1. Division of Pulmonary Medicine, Department of Medicine, Keio University School of Medicine, Tokyo, Japan. 2. Department of Internal Medicine, Saiseikai Utsunomiya Hospital, Utsunomiya, Japan. 3. Department of Medicine, Keiyu Hospital, Yokohama, Japan. 4. Department of Respiratory Medicine, Kitasato University School of Medicine, Sagamihara, Japan. 5. Division of Patient Safety, Keio University School of Medicine, Tokyo, Japan. 6. Department of Neuropsychiatry, Keio University School of Medicine, Tokyo, Japan. 7. Palliative Care Center, Keio University School of Medicine, Tokyo, Japan. 8. Department of Preventive Medicine and Public Health, Keio University School of Medicine, Tokyo, Japan. 9. Clinical and Translational Research Center, Keio University Hospital, Tokyo, Japan. 10. Department of Respiratory Medicine, National Hospital Organization Tokyo Medical Center, Tokyo, Japan. 11. Department of Internal Medicine, Sano-Kosei General Hospital, Sano, Japan. 12. Department of Internal Medicine, Tokyo Saiseikai Central Hospital, Tokyo, Japan. 13. Department of Respiratory Medicine, Tokyo Dental College Ichikawa General Hospital, Ichikawa, Japan. 14. Division of Pulmonary Medicine, Kawasaki Municipal Hospital, Kawasaki, Japan. 15. Department of Pulmonary Medicine, Eiju General Hospital, Tokyo, Japan. 16. Division of Pulmonary Medicine, Department of Medicine, Tokai University Hachioji Hospital, Hachioji, Japan.
Abstract
BACKGROUND: Accurate prognostic understanding in patients with advanced cancer is essential for shared decision making; however, patients may experience psychological burden through knowing the incurable nature of advanced cancer. It has been unclear how their prognostic understanding fluctuates and whether accurate prognostic understanding is associated with psychological distress from the time of diagnosis over time. MATERIALS AND METHODS: We longitudinally investigated prognostic understanding in 225 patients with newly diagnosed advanced lung cancer at 16 hospitals in Japan until 24 months after diagnosis. We examined associated factors with being consistently accurate in prognostic understanding, especially focusing on its association with psychological well-being. RESULTS: The proportion of patients with an inaccurate prognostic understanding remained approximately 20% over time with the presence of patients with inconsistent understanding. Patients with consistently accurate prognostic understanding showed a significantly lower Emotional Well-Being subscale score at both 3 and 6 months after diagnosis (p = .010 and p = .014, respectively). In multivariate analyses, being consistently accurate in prognostic understanding was significantly associated with female gender and higher lung cancer-specific symptom burden at 3 months (p = .008 and p = .005, respectively) and lower emotional well-being at 6 months (p = .006). CONCLUSION: Although substantial proportions of patients with advanced lung cancer had inaccurate prognostic understanding from the time of diagnosis over time, patients with consistently accurate prognostic understanding experienced greater psychological burden. Our findings highlight the importance of continuous psychological care and support for patients who understand their severe prognosis accurately. IMPLICATIONS FOR PRACTICE: This study demonstrated that approximately 20% of patients with advanced lung cancer had an inaccurate understanding about their prognosis, not only at the time of diagnosis but also at the later time points. Being consistently accurate in prognostic understanding was significantly associated with elevated levels of psychological distress. Although accurate prognostic understanding is essential for decision making for treatment and advance care planning, health care providers should be aware of psychological burdens in patients that accept their severe prognosis accurately. Appropriate care and support for such patients are warranted from diagnosis over time.
BACKGROUND: Accurate prognostic understanding in patients with advanced cancer is essential for shared decision making; however, patients may experience psychological burden through knowing the incurable nature of advanced cancer. It has been unclear how their prognostic understanding fluctuates and whether accurate prognostic understanding is associated with psychological distress from the time of diagnosis over time. MATERIALS AND METHODS: We longitudinally investigated prognostic understanding in 225 patients with newly diagnosed advanced lung cancer at 16 hospitals in Japan until 24 months after diagnosis. We examined associated factors with being consistently accurate in prognostic understanding, especially focusing on its association with psychological well-being. RESULTS: The proportion of patients with an inaccurate prognostic understanding remained approximately 20% over time with the presence of patients with inconsistent understanding. Patients with consistently accurate prognostic understanding showed a significantly lower Emotional Well-Being subscale score at both 3 and 6 months after diagnosis (p = .010 and p = .014, respectively). In multivariate analyses, being consistently accurate in prognostic understanding was significantly associated with female gender and higher lung cancer-specific symptom burden at 3 months (p = .008 and p = .005, respectively) and lower emotional well-being at 6 months (p = .006). CONCLUSION: Although substantial proportions of patients with advanced lung cancer had inaccurate prognostic understanding from the time of diagnosis over time, patients with consistently accurate prognostic understanding experienced greater psychological burden. Our findings highlight the importance of continuous psychological care and support for patients who understand their severe prognosis accurately. IMPLICATIONS FOR PRACTICE: This study demonstrated that approximately 20% of patients with advanced lung cancer had an inaccurate understanding about their prognosis, not only at the time of diagnosis but also at the later time points. Being consistently accurate in prognostic understanding was significantly associated with elevated levels of psychological distress. Although accurate prognostic understanding is essential for decision making for treatment and advance care planning, health care providers should be aware of psychological burdens in patients that accept their severe prognosis accurately. Appropriate care and support for such patients are warranted from diagnosis over time.
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