Longitudinal Assessment of Prognostic Understanding in Patients with Advanced Lung Cancer and Its Association with Their Psychological Distress

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. The Oncologist 2021;26:e2265–e2273 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. Correspondence: Takashi Sato, M.D., Ph.D., Division of Pulmonary Medicine, Department of Medicine, Keio University School of Medicine, 35 Shinanomachi, Shinjuku-ku, Tokyo 160-8582, Japan. Telephone: 81-3-3353-1211 (ext. 62310); e-mail: takashisato@keio.jp Received March 25, 2021; accepted for publication August 19, 2021; published Online First on September 23, 2021. http://dx.doi.org/10.1002/ onco.13973 No part of this article may be reproduced, stored, or transmitted in any form or for any means without the prior permission in writing from the copyright holder. For information on purchasing reprints contact commercialreprints@wiley.com. For permission information contact permissions@wiley.com. © 2021 AlphaMed Press. The Oncologist 2021;26:e2265–e2273 www.TheOncologist.com Symptom Management and Supportive Care 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.

[1]  P. Maciejewski,et al.  Advanced Cancer Patients' Changes in Accurate Prognostic Understanding and Their Psychological Well-Being. , 2019, Journal of pain and symptom management.

[2]  J. V. van Meerbeeck,et al.  Prognostic Understanding and Quality of Life in Patients With Advanced Lung Cancer: A Multicenter Study. , 2019, Clinical lung cancer.

[3]  T. Betsuyaku,et al.  Prognostic Understanding at Diagnosis and Associated Factors in Patients with Advanced Lung Cancer and Their Caregivers. , 2018, The oncologist.

[4]  H. Prigerson,et al.  The interactive effect of advanced cancer patient and caregiver prognostic understanding on patients' completion of Do Not Resuscitate orders , 2018, Psycho-oncology.

[5]  M. Clark,et al.  Emotional Problems, Quality of Life, and Symptom Burden in Patients With Lung Cancer. , 2017, Clinical lung cancer.

[6]  J. V. van Meerbeeck,et al.  Addressing the Palliative Setting in Advanced Lung Cancer Should Not Remain a Barrier: A Multicenter Study , 2017, Clinical lung cancer.

[7]  L. Traeger,et al.  Coping and Prognostic Awareness in Patients With Advanced Cancer. , 2017, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[8]  M. Kamdar,et al.  Effects of Early Integrated Palliative Care in Patients With Lung and GI Cancer: A Randomized Clinical Trial. , 2017, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  S. Tang,et al.  Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients' last year of life , 2016, Psycho-oncology.

[10]  H. Prigerson,et al.  Outcomes of Prognostic Disclosure: Associations With Prognostic Understanding, Distress, and Relationship With Physician Among Patients With Advanced Cancer. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[11]  Mark T Hegel,et al.  Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. , 2015, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[12]  T. Pawlik,et al.  What are patients' expectations about the effects of chemotherapy for advanced cancer? , 2014, Journal of the American College of Surgeons.

[13]  S. Tang,et al.  Associations between accurate prognostic understanding and end‐of‐life care preferences and its correlates among Taiwanese terminally ill cancer patients surveyed in 2011–2012 , 2014, Psycho-oncology.

[14]  L. Traeger,et al.  Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer , 2014, Cancer.

[15]  R. Heist,et al.  Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[16]  G. Bonanno,et al.  Distress trajectories at the first year diagnosis of breast cancer in relation to 6 years survivorship , 2012, Psycho-oncology.

[17]  J. Temel,et al.  Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[18]  Alona Muzikansky,et al.  Early palliative care for patients with metastatic non-small-cell lung cancer. , 2010, The New England journal of medicine.

[19]  F. Shepherd,et al.  Longitudinal study of depressive symptoms in patients with metastatic gastrointestinal and lung cancer. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[20]  Jane C Weeks,et al.  End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  Crystal L. Park,et al.  Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events. , 2010, Psychological bulletin.

[22]  G. Apolone,et al.  Illness awareness in terminal cancer patients: an Italian study , 2009, Palliative medicine.

[23]  P. Maciejewski,et al.  Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. , 2008, JAMA.

[24]  A. Bezjak,et al.  Enhancing treatment decision-making: pilot study of a treatment decision aid in stage IV non-small cell lung cancer , 2008, British Journal of Cancer.

[25]  Kunihiko Kobayashi,et al.  Cross-cultural validation of the Japanese version of the lung cancer subscale on the functional assessment of cancer therapy-lung. , 2007, Journal of Nippon Medical School = Nippon Ika Daigaku zasshi.

[26]  K. Dear,et al.  Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process , 2007, Supportive Care in Cancer.

[27]  Sang Min Park,et al.  Understanding disparities in aggressive care preferences between patients with terminal illness and their family members. , 2006, Journal of pain and symptom management.

[28]  G. Bonanno Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events? , 2008, The American psychologist.

[29]  N. Christakis,et al.  Preparing for the end of life: preferences of patients, families, physicians, and other care providers. , 2001, Journal of pain and symptom management.

[30]  N. Christakis,et al.  Factors considered important at the end of life by patients, family, physicians, and other care providers. , 2000, JAMA.

[31]  E. Cook,et al.  Relationship between cancer patients' predictions of prognosis and their treatment preferences. , 1998, JAMA.

[32]  G. Huston The Hospital Anxiety and Depression Scale. , 1987, The Journal of rheumatology.