Patients' expectations about effects of chemotherapy for advanced cancer.

BACKGROUND Chemotherapy for metastatic lung or colorectal cancer can prolong life by weeks or months and may provide palliation, but it is not curative. METHODS We studied 1193 patients participating in the Cancer Care Outcomes Research and Surveillance (CanCORS) study (a national, prospective, observational cohort study) who were alive 4 months after diagnosis and received chemotherapy for newly diagnosed metastatic (stage IV) lung or colorectal cancer. We sought to characterize the prevalence of the expectation that chemotherapy might be curative and to identify the clinical, sociodemographic, and health-system factors associated with this expectation. Data were obtained from a patient survey by professional interviewers in addition to a comprehensive review of medical records. RESULTS Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer did not report understanding that chemotherapy was not at all likely to cure their cancer. In multivariable logistic regression, the risk of reporting inaccurate beliefs about chemotherapy was higher among patients with colorectal cancer, as compared with those with lung cancer (odds ratio, 1.75; 95% confidence interval [CI], 1.29 to 2.37); among nonwhite and Hispanic patients, as compared with non-Hispanic white patients (odds ratio for Hispanic patients, 2.82; 95% CI, 1.51 to 5.27; odds ratio for black patients, 2.93; 95% CI, 1.80 to 4.78); and among patients who rated their communication with their physician very favorably, as compared with less favorably (odds ratio for highest third vs. lowest third, 1.90; 95% CI, 1.33 to 2.72). Educational level, functional status, and the patient's role in decision making were not associated with such inaccurate beliefs about chemotherapy. CONCLUSIONS Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients' understanding, but this may come at the cost of patients' satisfaction with them. (Funded by the National Cancer Institute and others.).

[1]  Thomas J. Smith,et al.  A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer. , 2011, The journal of supportive oncology.

[2]  T. Hak,et al.  Collusion in doctor-patient communication about imminent death: an ethnographic study , 2000, BMJ : British Medical Journal.

[3]  A. Zaslavsky,et al.  Multiple imputation in a large-scale complex survey: a practical guide , 2010, Statistical methods in medical research.

[4]  J. Finkelstein,et al.  Patients with advanced cancer: a survey of the understanding of their illness and expectations from palliative radiotherapy for symptomatic metastases. , 2001, Clinical oncology (Royal College of Radiologists (Great Britain)).

[5]  K. Kahn,et al.  Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey , 2006, Supportive Care in Cancer.

[6]  E. Emanuel,et al.  Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. , 2000, JAMA.

[7]  G. Luporini,et al.  Effects of vinorelbine on quality of life and survival of elderly patients with advanced non-small-cell lung cancer. The Elderly Lung Cancer Vinorelbine Italian Study Group. , 1999, Journal of the National Cancer Institute.

[8]  Setting Goals to Maintain Hope , 2003 .

[9]  K. Kahn,et al.  Patients' experiences with care for lung cancer and colorectal cancer: findings from the Cancer Care Outcomes Research and Surveillance Consortium. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[10]  D. Schapira,et al.  Cancer patients' insight into their treatment, prognosis, and unconventional therapies , 1984, Cancer.

[11]  F. Ferris,et al.  Assessment of the Education for Physicians on End-of-Life Care (EPEC) Project. , 2004, Journal of palliative medicine.

[12]  W. Gregory,et al.  Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. , 1990, BMJ.

[13]  E. Cook,et al.  Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[14]  Phyllis N Butow,et al.  When the treatment goal is not cure: are cancer patients equipped to make informed decisions? , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[15]  C. V. von Gunten,et al.  Development of a medical subspecialty in palliative medicine: progress report. , 2004, Journal of palliative medicine.

[16]  R. Hays,et al.  Psychometric properties of the CAHPS 1.0 survey measures. Consumer Assessment of Health Plans Study. , 1999, Medical care.

[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]  P S Appelbaum,et al.  Two models of implementing informed consent. , 1988, Archives of internal medicine.

[19]  J.,et al.  The New England Journal of Medicine , 2012 .

[20]  Thomas J. Smith,et al.  Explaining Marginal Benefits to Patients, When “Marginal” Means Additional but Not Necessarily Small , 2010, Clinical Cancer Research.

[21]  Thomas J. Smith,et al.  American society of clinical oncology statement: toward individualized care for patients with advanced cancer. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[22]  G. Bertelli,et al.  What do advanced cancer patients know of their disease? , 1994, Supportive Care in Cancer.

[23]  B. Bergman,et al.  Quality of life and survival in patients with advanced non-small cell lung cancer receiving supportive care plus chemotherapy with carboplatin and etoposide or supportive care only. A multicentre randomised phase III trial. Joint Lung Cancer Study Group. , 1998, European journal of cancer.

[24]  Yulei He,et al.  Missing data analysis using multiple imputation: getting to the heart of the matter. , 2010, Circulation. Cardiovascular quality and outcomes.

[25]  K. Kahn,et al.  Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[26]  L. Påhlman,et al.  Quality of life during chemotherapy in patients with symptomatic advanced colorectal cancer , 1994, Cancer.

[27]  K. Kahn,et al.  Representativeness of Participants in the Cancer Care Outcomes Research and Surveillance Consortium Relative to the Surveillance, Epidemiology, and End Results Program , 2013, Medical care.

[28]  C. Wilson,et al.  Leucovorin and fluorouracil with or without oxaliplatin as first-line treatment in advanced colorectal cancer. , 2000, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[29]  J. V. Von Roenn,et al.  Setting goals to maintain hope. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[30]  W. Mackillop,et al.  Cancer patients' perceptions of their disease and its treatment. , 1988, British Journal of Cancer.

[31]  L. Rips,et al.  The Psychology of Survey Response , 2000 .

[32]  P. Grossman,et al.  Receiving the diagnosis of lung cancer: patient recall of information and satisfaction with physician communication. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[33]  Jane C Weeks,et al.  Cancer patients' roles in treatment decisions: do characteristics of the decision influence roles? , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[34]  H. Muss,et al.  Patient preferences for treatment of metastatic breast cancer: a study of women with early-stage breast cancer. , 1995, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[35]  D. White,et al.  A randomized trial of two methods to disclose prognosis to surrogate decision makers in intensive care units. , 2010, American journal of respiratory and critical care medicine.

[36]  A. Oza,et al.  Supporting treatment decision making in advanced cancer: a randomized trial of a decision aid for patients with advanced colorectal cancer considering chemotherapy. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[37]  A. H. Dinsmore,et al.  New England , 1894, Letters from America.

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

[39]  Jayne Tierney,et al.  Chemotherapy in addition to supportive care improves survival in advanced non-small-cell lung cancer: a systematic review and meta-analysis of individual patient data from 16 randomized controlled trials. , 2008, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[40]  K. Kahn,et al.  Impact of Physician–Patient Discussions on Patient Satisfaction , 2008, Medical care.

[41]  Stephen Joel Coons,et al.  US Valuation of the EQ-5D Health States: Development and Testing of the D1 Valuation Model , 2005, Medical care.

[42]  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.