OBJECTIVE: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. METHODS: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12-month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty-four patients completed all three phases of data collection. RESULTS: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non-significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185-0.510). CONCLUSIONS: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.

Center for Palliative Care Prague Czech Republic

Department of Oncology 1st Faculty of Medicine and General University Hospital Prague Czech Republic

Department of Oncology 1st Faculty of Medicine and Thomayer Hospital Charles University Prague Czech Republic

Department of Sociology Faculty of Social Science Charles University Prague Czech Republic

Division of Medical Psychology 3rd Faculty of Medicine Charles University Prague Czech Republic

Zobrazit více v PubMed

van Vliet LM, Epstein AS. Current state of the art and science of patient-clinician communication in progressive disease: patients' need to know and need to feel known. J Clin Oncol. 2014;32:3474-3478.

Jordan K, Aapro M, Kaasa S, et al. European Society for Medical Oncology (ESMO) position paper on supportive and palliative care. Ann Oncol. 2018;29:36-43.

Gilligan T, Coyle N, Frankel RM, et al. Patient-clinician communication: American society of clinical oncology consensus guideline. J Clin Oncol. 2017;35:3618-3632.

Back AL. Patient-clinician communication issues in palliative care for patients with advanced cancer. J Clin Oncol. 2020;38:866-876.

Butow PN, Clayton JM, Epstein RM. Prognostic awareness in adult oncology and palliative care. J Clin Oncol. 2020;38:877-884.

Applebaum AJ, Kolva EA, Kulikowski JR, et al. Conceptualizing prognostic awareness in advanced cancer: a systematic review. J Health Psychol. 2014;19:1103-1119.

Chen CH, Kuo SC, Tang ST. Current status of accurate prognostic awareness in advanced/terminally ill cancer patients: systematic review and meta-regression analysis. Palliat Med. 2017;31:406-418.

Walczak A, Butow PN, Bu S, Clayton JM. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99:3-16.

Vlckova K, Tuckova A, Polakova K, Loucka M. Factors associated with prognostic awareness in patients with cancer: a systematic review. Psycho Oncol. 2020;29:990-1003.

Saracino RM, Polacek LC, Applebaum AJ, Rosenfeld B, Pessin H, Breitbart W. Health information preferences and curability beliefs among patients with advanced cancer. J Pain Symptom Manag. 2021;61:121-127.

Yun YH, Kwon YC, Lee MK, et al. Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol. 2010;28:1950-1957.

Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol. 2015;33:3809-3816.

Wen F-H, Chen J-S, Chang W-C, Chou W-C, Hsieh C-H, Tang ST. Accurate prognostic awareness and preference states influence the concordance between terminally ill cancer patients' states of preferred and received life-sustaining treatments in the last 6 months of life. Palliat Med. 2019;33:1069-1079.

Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28:1203-1208.

Yoo SH, Lee J, Kang JH, et al. Association of illness understanding with advance care planning and end-of-life care preferences for advanced cancer patients and their family members. Support Care Canc. 2020;28:2959-2967.

Hebert RS, Schulz R, Copeland VC, Arnold RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manag. 2009;37:3-12.

Papadopoulos A, Vrettos I, Kamposioras K, et al. Impact of cancer patients' disease awareness on their family members' health-related quality of life: a cross-sectional survey. Psycho-Oncol. 2011;20:294-301.

Gray TF, Forst D, Nipp RD, Greer JA, Temel JS, El-Jawahri A. Prognostic awareness in caregivers of patients with incurable cancer. J Palliat Med. 2021;24:561. Online ahead of print. doi:10.1089/jpm.2020.0236

Tzuh S, Chang W-C, Chou W-C, Hsieh C-H, Chen J-S, Wen F-H. Family caregivers' emotional preparedness for death is distinct from their cognitive prognostic awareness for cancer patients. J Palliat Med. 2021;24:405-412.

Kang E, Keam B, Lee N-R, et al. Impact of family caregivers' awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study. Support Care Canc. 2021;29:397-407.

Jackson VA, Jacobsen J, Greer JA, Pirl WF, Temel JS, Back AL. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: a communication guide. J Palliat Med. 2013;16:894-900.

Moss AH, Lunney JR, Culp S, et al. Prognostic significance of the “Surprise” Question in cancer patients. J Palliat Med. 2010;13:837-840.

Prigerson HG. Socialization to dying: social determinants of death acknowledgment and treatment among terminally ill geriatric patients. J Health Soc Behav. 1992;33:378-395.

Awareness IGEO. Of disease among Italian cancer patients: is there a need for further improvement in patient information? The Italian Group for the Evaluation of Outcomes in Oncology (IGEO). Ann Oncol. 1999;10:1095-1100.

Shin DW, Cho J, Kim SY, et al. Patients' and family caregivers' understanding of the cancer stage, treatment goal, and chance of cure: a study with patient-caregiver-physician triad. Psycho-Oncol. 2018;27:106-113.

Bowker AH. A test for symmetry in contingency tables. J Am Stat Assoc. 1948;43:572-574.

Hsiu Chen C, Wen FH, Hou MM, et al. Transitions in prognostic awareness among terminally ill cancer patients in their last 6 Months of life examined by multi-state markov modeling. Oncol. 2017;22:1135-1142.

Epstein AS, Prigerson HG, O'Reilly EM, Maciejewski PK. Discussions of life expectancy and changes in illness understanding in patients with advanced cancer. J Clin Oncol. 2016;34:2398-2403.

Greer JA, Applebaum AJ, Jacobsen JC, Temel JS, Jackson VA. Understanding and addressing the role of coping in palliative care for patients with advanced cancer. J Clin Oncol. 2020;38:915-925.

Soylu C, Babacan T, Sever AR, Altundag K. Patients' understanding of treatment goals and disease course and their relationship with optimism, hope, and quality of life: a preliminary study among advanced breast cancer outpatients before receiving palliative treatment. Support Care Canc. 2016;24:3481-3488.

Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K. Approaching difficult communication tasks in oncology. CA A Cancer J Clin. 2005;55:164.

Hope and illness expectations: A cross-sectional study in patients with advanced cancer