SEARCH

SEARCH BY CITATION

Keywords:

  • elderly;
  • chemotherapy;
  • treatment understanding;
  • limited English speakers;
  • chemotherapy

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

BACKGROUND:

The American Society of Clinical Oncology Quality Oncology Practice Initiative endorses in their core measures that providers should discuss the goals of care (GOC) at the time of chemotherapy consent. GOC refers to chemotherapy treatment intent: cure versus noncure. In this study, the authors sought to determine whether attributes of patients and initial patient-physician encounters were associated with patients' understanding of their GOC.

METHODS:

In total, the authors surveyed 125 consecutive, newly diagnosed patients who were receiving chemotherapy for solid malignancies at a single academic cancer center and performed a medical record review for additional data. Patient understanding of their oncologist's GOC and oncologist's reported GOC were compared. The primary outcome was concordance of patient-physician dyads regarding the GOC (cure vs noncure).

RESULTS:

One hundred twenty-five of 137 of eligible patients (91%) completed the survey. Only 95 of 125 patient-physician pairs (75%) patient-physician pairs were concordant regarding the GOC. In a multivariable logistic regression, both older patients (odds ratio, 0.21; 95% confidence interval, 0.08-0.57) and non-native English speakers had an almost 80% lower odds (odds ratio, 0.23; 95% confidence interval, 0.05-0.93) of GOC concordance compared with younger patients and native English speakers. Patients who received printed chemotherapy information during the patient-physician consent process had almost 3 times greater odds (odds ratio, 2.88; 95% confidence interval, 1.24-6.68) of GOC concordance with their physician compared with those who did not receive materials.

CONCLUSIONS:

Patient misunderstanding of GOC was substantial, with 25% of cancer patients misunderstanding the goal of their chemotherapy treatment. Key predictors of GOC misunderstanding included factors that potentially were amenable to interventions at the time of chemotherapy consent. Cancer 2013. © 2012 American Cancer Society.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

A consent form, signed and dated by both the patient and their treating physician, that details the chemotherapy drugs and their potential toxicities is a requirement at most medical centers. This form is intended to document the conversation between patient and oncologist and to demonstrate that the patient was informed of their treatment options, the expected risks, and the potential benefits of the treatment they are agreeing to receive. Prior research suggests that patients and physicians may differ in their understanding of the intent of chemotherapy or goals of care (GOC).1-3 Misperceptions of prognosis or GOC are important to recognize, because they may lead to requests for ineffective or futile medical care.4-6 An accurate understanding of GOC may lead to patients making more informed treatment decisions that are aligned with their overall goals and avoid costly treatments at the end of life.7-10

Inherent in the GOC discussion before chemotherapy is a discussion of the cancer diagnosis, prognosis, and treatment options. Discussing prognosis with patients can be a difficult undertaking, and there are several reasons why physicians may not discuss prognosis. Physicians may fear that they will increase patient distress or cause a patient to lose hope.11 Alternatively, if a discussion regarding prognosis occurs, then there is also the possibility that the physician discloses overly optimistic information.4, 12-15 Prior research indicates that approximately 33% of patients who receive treatment for incurable cancer overestimate their prognoses compared with their physicians.4, 7, 16

We examined cancer patient-physician dyads to measure concordance in understanding the GOC of chemotherapy. We dichotomized GOC into 2 categories—curative and non-curative—and focused on patients' understanding of the GOC at initiation of chemotherapy to determine whether patient attributes and components of the initial patient-physician encounters were associated with subsequent patient-physician GOC concordance.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

We sampled all consecutive, newly diagnosed patients who received their first course of intravenous chemotherapy for a solid malignancy at Massachusetts General Hospital (MGH) between December 17, 2008 and February 23, 2009. Patients were screened for eligibility using the new patient appointment lists in the Massachusetts General Hospital chemotherapy infusion suite. All stages of disease (stages I-IV) were eligible for participation. Patients were required to be able to read and speak English. Patients also were required to have participated in the consent discussion for chemotherapy within the previous 30 days, and patients could not be enrolled on a clinical trial.

Eligible patients were approached by a member of the research staff during their chemotherapy appointment and were invited to participate in the study. The patients provided verbal consent for the study, which included completion of the survey and a review of their medical records. Consenting patients were provided the survey to complete during their chemotherapy infusion. Data collected from the medical record included age, sex, disease site, stage, histology, reason(s) for ineligibility, provider name, and the provider's GOC. This study was approved by the institutional review board at Dana-Farber/Harvard Cancer Center.

Survey Instrument

The 24-item survey (Appendix A) was designed to assess patient understanding of the goal of their chemotherapy treatment and to measure several areas that are relevant to this understanding. The domains of interest addressed by the patient survey included: 1) social support, 2) diagnosis, 3) prognosis, 4) treatment goals, 5) information preferences, 6) psychological distress, and 7) chemotherapy consent. Items addressing these domains were included from previously validated surveys.11, 17-20 The survey also asked patients to describe their demographics and functional status, and the survey included questions addressing the details of the patients' consent conversations with their treating physicians. The survey consisted of primarily close-ended questions with multiple response options. Most questions included the option other through which patients could express responses that were not among those listed. The survey was piloted on a sample of 10 patients.

Outcome Variables

The key outcome variable in the analyses was patient-physician concordance regarding the oncologist's treatment intent (curative vs non-curative). To determine patients' understanding of their oncologists' goals of chemotherapy treatment, the survey included the following question: “What did your oncologist explain the purpose of your chemotherapy to be? (please check all that apply).” Response options were as follows: 1) decrease the chance the disease will return, also called adjuvant treatment; 2) provide a prolonged time without any evidence of disease, also called cure; 3) control the growth of the cancer without getting rid of it completely to prolong life; and 4) reduce side effects and symptoms of the cancer to promote your comfort, also called palliation. We coded positive responses to options 1 and/or 2 as curative and coded positive responses to options 3 and/or 4 as non-curative. If the respondent checked the last option in combination with either the first or the second response options, then the response was categorized as curative. If the respondent checked the third option with either the first or the second response options, then the response was categorized as confused, because the patient indicated that the goal of chemotherapy treatment was both cure and non-cure.

To determine the physicians' goals of chemotherapy treatment for each patient in the study, we reviewed the Massachusetts General Hospital chemotherapy order entry system. The chemotherapy order entry, as part of the process of writing orders for chemotherapy, requires physicians to answer several questions regarding the patient (eg, patient height and weight, tumor site, treatment regimen) before they can write chemotherapy orders. One such question asks physician to indicate whether the chemotherapy regimen is being administered for either adjuvant/neoadjuvant/curative intent or palliative/metastatic intent. In this analysis, palliative/metastatic intent was coded as non-curative. If a patient and their physician indicated the same GOC, then we termed this result concordant. If a patient and their physician indicated a different GOC, then we termed this result non-concordant. Within the non-concordant category, the results were subdivided into patients who were more optimistic than the physician (ie, the patient indicated curative intent, and the physician indicated non-curative intent) and patients who were less optimistic than the physician (ie, the patient indicated non-curative intent, and the physician indicated curative intent).

Predictor Variables

Hypotheses drove the selection of the majority of predictor variables we studied and were defined a priori. Predictor variables included distress level (from the National Comprehension Cancer Network Distress Thermometer on the patient survey20), English as a second language, provision of printed information on chemotherapy (measured by the patient reporting whether or not they received printed handouts explaining the role and intent of their chemotherapy drugs), and whether the patient was alone at the time of the consent discussion. In addition, given the possibility that 1) physician communication style may vary according to their cancer subspecialty (eg, breast cancer specialists may communicate GOC differently than lung cancer specialists) and 2) each physician was a member of only 1 subspecialty group, patient tumor site (as a measure of physician specialty) also was considered among the possible predictor variables. Standard demographic variables (ie, age, sex, race, education level) also were included among predictor variables as well as tumor stage.

Statistical Analysis

We determined measures of central tendency for all covariates and for the outcome variable. In bivariate analyses, we compared the cohorts' covariates with the outcome variable to determine associations. Associations between categoric variables were determined using chi-square tests, and associations between categoric and continuous variables were determined using t tests. Multivariable logistic regression described associations between predictor variables and the outcome variable. We estimated variance using the robust method (also known as the Huber/White/sandwich method)21, 22 for clustered-correlated data; because, with this method, multiple patients can be nested or clustered within a smaller number of providers.23 All analyses were done using the STATA statistical software package (version 11.2; Stata Corporation, College Station, Tex).

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

In total, 268 consecutive patients were screened for the study; of these, 137 patients were eligible, and 125 consented to participate (response rate, 91%) (Fig. 1). The predominant reasons for patient ineligibility included non-chemotherapy treatment (eg, blood transfusion; N = 36), enrollment on a clinical trial (N = 20), and treatment with second-line (or higher) therapies (N = 17). Table 1 lists the baseline characteristics of all participants. The mean patient age was 62 years, and 38% were aged ≥65 years, 42% were men, 58% were women, 9% were nonwhite, and 12% indicated that English was their second language (however, they were able to read and write in English without an interpreter and, thus, were eligible for the study). In addition, 68% of patients reported at least a college education, and the mean distress score (on a scale from 0 to 10) for the sample on the day of survey was 4.31.

thumbnail image

Figure 1. This diagram illustrates eligibility for study enrollment and the response rate (RR). The schematic indicates the reasons why screened patients were deemed ineligible and the subsequent RR for those who were deemed eligible for enrollment.

Download figure to PowerPoint

Table 1. Sample Characteristics, N = 125a
VariableNo. of Patients (%)
  • Abbreviations: GI, gastrointestinal; GU, genitourinary; GYN, gynecologic; NCCN, National Comprehensive Cancer Network.

  • a

    This table lists the characteristics of surveyed patients in the analytic sample who were receiving their first course of chemotherapy.

Mean age, y62
Sex
 Women73 (58)
 Men52 (42)
Race
 White114 (91)
 Non-white11 (9)
Native language
 English110 (88)
 Non-English15 (12)
Education
 ≤High school40 (32)
 >High school84 (68)
Primary tumor site
 Lung13 (10)
 GI39 (32)
 Breast34 (27)
 Head and neck14 (11)
 GU10 (8)
 GYN6 (5)
 Other9 (7)
Tumor stage
 I18 (14)
 II25 (20)
 III35 (28)
 IV41 (33)
 Other6 (5)
Patient alone at visit
 Yes16 (13)
 No109 (87)
Mean NCCN distress score4.31
Patient-physician concordance95 (76)

Of the patient-physician dyads, 76% (95 of 125) were concordant, and 24% (30 of 125) were discordant regarding GOC. The kappa coefficient was 0.44, indicating moderate agreement between patients and their physicians on this matter.24 Of the patient-physician dyads that were concordant (n = 95), the goal of treatment was curative 99% (94 of 95) of the time and non-curative 1% (1 of 95) of the time. Of the patient-physician dyads that were discordant (n = 30), 20 of 30 patients (66%) reported that their physician was treating them with curative intent, but their physicians reported that the intent was non-curative. In the remaining patients, 10 of 30 patients (33%) reported that their physician was treating them with non-curative intent, but their physicians reported that the intent was curative.

Bivariate analysis (Table 2) demonstrated a strong association between GOC concordance and patient age. Concordant patients tended to be younger than non-concordant patients (mean age, 60 years vs 66 years; P = .02). In addition, 6 of 15 participants (40%) who spoke English as a second language were discordant regarding GOC, which was approximately twice the rate (24 of 110 participants; 22%) among of native English speakers (P = .12). The concordant and non-concordant groups did not vary with respect to sex, race, education, or distress level; nor did they vary with respect to patients' cancer site or disease stage (results not shown).

Table 2. Associations of Concordance of Patient-Physician Understandings of Goals of Care by Patient Attributesa
VariableGoals of Care: No. of Patients (%)Pb
Concordant, N = 95Non-concordant, N = 30
  • Abbreviations: NCCN, National Comprehensive Cancer Network.

  • a

    Results from an analysis of bivariate associations of concordance between patient and physician understandings of the goals of care are listed according to patient attributes.

  • b

    P values were calculated using the chi-square test unless otherwise noted.

  • c

    This P value was calculated using a t test.

Mean age, y6066.02
Sex  .82
 Women56 (59)17 (57) 
 Men39 (41)13 (43) 
Race  .79
 White87 (92)27 (90) 
 Nonwhite8 (8)3 (10) 
Native language  .12
 English86 (91)24 (80) 
 Non-English9 (9)6 (20) 
Education  .88
 ≤High school30 (32)10 (33) 
 >High school64 (68)20 (67) 
Patient alone at visit  .92
 Yes12 (13)4 (13) 
 No83 (87)26 (87) 
Mean NCCN distress score4.264.47.77c

In the multivariable logistic regression model (Table 3), 3 predictors of concordance emerged as both clinically and statistically significant. Patients aged ≥65 years had almost 80% lower odds (odds ratio, 0.21; P = .01) of concordance compared with patients aged <65 years. Patients who spoke English as a second language had an almost 80% lower odds (odds ratio, 0.23; P = .04) of concordance compared with patients who were native English speakers. Finally, the patients who reported receiving printed chemotherapy education materials at the time of chemotherapy consent had almost 3 times the odds (odds ratio, 2.88; P = .01) of concordance compared with those who did not report receiving the materials.

Table 3. Multivariable Results Describing the Factors Associated With Patient-Physician Concordance Regarding Goals of Chemotherapy Treatmenta
VariableGOC: Overall Patient-Physician Concordance (95% CI)P
  • Abbreviations: CI, confidence interval; GOC, goals of care; NCCN, National Comprehensive Cancer Network.

  • a

    Results are listed from a multivariable logistic regression model estimating the odds of association between patient factors and concordance between patients and physicians regarding the goals of chemotherapy treatment.

Age, y
 <651.00 (Referent) 
 ≥650.21 (0.08-0.57).01
Sex
 Women1.00 (Referent) 
 Men1.09 (0.43-2.74).86
Race
 Non-white1.00 (Referent) 
 White0.99 (0.28-3.51).99
Education
 >High school1.00 (Referent) 
 ≤High school1.25 (0.51-3.08).62
Native language
 English1.00 (Referent) 
 Non-English0.23 (0.06-0.93).04
Printed materials provided
 No1.00 (Referent) 
 Yes2.88 (1.24-6.68).01
Patient alone at visit
 No1.00 (Referent) 
 Yes0.52 (0.13-2.17).37
NCCN distress score
 <41.00 (Referent) 
 ≥41.05 (0.38-2.90).93

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

The current investigation demonstrates that the concordance of patient-physician dyads regarding GOC was the same in only 76% of cases and that 30 of 125 patients (24%) did not appear to understand what the chemotherapy they were receiving was intended to do for their illness. Of these patients, most believed that their physician was treating them for cure, whereas their physicians' stated intent was not curative. This finding resonates with previously published reports of discordance of physician-patient dyads on the matter of prognosis among cancer patients, in whom it has been demonstrated that ≥33% of patients with advanced cancer hold more optimistic survival expectations (ie, prognoses) than their physicians.2, 7, 12

The current work extends the existing literature on cancer patients' understanding of their illness by identifying yet another index of patient cancer care (ie, treatment goals) in which there appears to be patient misunderstanding (generally optimistic) regarding their illness. We observed that approximately 25% of patients did not appear to understand the goals of the potentially toxic chemotherapy they were receiving. Patient and physician clarity at the time of treatment decision-making regarding GOC is of critical importance given that misunderstandings like these have the potential to lead to future requests for more intense, but often futile, chemotherapy.4-6

Although some of the non-concordance regarding GOC in the incurable population may be attributed to unrealistic optimism,24 the quality of the pretreatment patient-physician discussions likely also have an impact on this measure. At least 2 of our findings suggest that physician-patient communication may explain some of the discrepancy in GOC understanding between patients and physicians. That is: 1) non-native English speakers were less likely than native English speakers to share their physicians' understanding of their chemotherapy treatment intent, and 2) those patients who received printed material were more likely to understand their physicians' treatment intent. These findings point to potentially amenable aspects of the patient-physician encounter that may lead to a better understanding of GOC, including communication aids targeted at elderly and non-native English-speaking patients and the provision of printed information material at the time of the chemotherapy consent process.

A signed patient consent for chemotherapy is an American Society of Clinical Oncology Quality Oncology Practice Initiative measure25 and is intended to be a proxy for an open, honest, and informative conversation between provider and patient that includes all information (including GOC) needed for a patient to understand relevant treatment possibilities and their potential outcomes.26, 27 Misunderstanding the GOC (eg, curative vs non-curative) may lead patients to make treatment decisions they otherwise would not have made.28 The 20 of 125 patients in our study who erroneously believed that the chemotherapy they were receiving was intended to cure them may have made treatment decisions without the full understanding that a cure was not possible. In addition, there was a small subset of patients whose physicians' treatment intent was curative, but the patients believed that their disease was not curable. This type of patient misunderstanding is no less concerning. To our knowledge, this is the first report of pessimistic misunderstanding by patients who are being treated with curative intent.

Of the patient characteristics, patient age predicted non-concordance regarding GOC. This finding is noteworthy in light of other research indicating that providers are more likely to have a frank discussion regarding prognosis with older patients.12 Our finding that non-native English speakers experienced greater discordance in understanding GOC compared with native English speakers, to our knowledge, has not been documented previously. Finally, our finding that those patients who received printed material were more likely to understand their physicians' treatment intent is also a novel finding. The latter findings suggest that communication between providers and patients is at least a component of the problem. Perhaps longer treatment-planning visits with the inclusion of available friends or family would improve patients' understanding of their disease, its prognosis, and the range of treatment options. Similarly providing communication aids, such as specialized interpreters, may improve understanding of GOC for those with limited English proficiency.29-33

The findings may be consistent with low health literacy as a mediating factor. That is, older cancer patients have among the lowest health literacy rates and face complex oncology management options that must balance comorbidities and end-of-life preferences. They may also suffer cognitive and sensory deficits that complicate effective communication. Non-native English speakers also face important barriers to health literacy not only with language proficiency but also with cultural differences that present communication challenges in the health care setting.34-36 Suboptimal health literacy is an independent risk factor for poor health outcomes, including diminished cancer screening, advanced stage at diagnosis, increased risk of hospitalization, decreased acceptance of and/or compliance with treatment, and decreased participation in clinical trials.37, 38

The current study does have are some potential limitations. First, the study was conducted at a single institution with few minority patients. Despite this, we had a substantial percentage of study participants for whom English was their second language. Second, we used an original questionnaire to assess communication of GOC information and evaluated patient understanding of GOC with a single question. It is possible that the apparent association between patient receipt of printed material and concordance was confounded by patient literacy. In addition, there was no detailed evaluation or direct observation of what the consent or prognostic discussion between provider and patient entailed. However, the findings suggest that examination of GOC understanding in a larger cohort of patients and examination of potential differences in subsequent health care use according to patient-physician convergence versus nonconvergence regarding GOC are important future steps.

In summary, we demonstrated that only 76% of patients reported GOC that were concordant with the treating oncologist. A 24% rate of cancer patients' misunderstanding about their disease trajectory is consistent with prior research, and most patients deviate toward an optimistic misunderstanding of their prognosis. Our research advances the literature on cancer patients' apparent misunderstanding of the goals of chemotherapy treatment by identifying 2 patient characteristics, age ≥65 years and non-native English speakers; and these characteristics are associated with a high risk for misunderstanding the goals of chemotherapy treatment. Given that low health literacy may mediate the observed misunderstanding for such patients, longer treatment-planning visits in conjunction with additional communication aids beyond printed materials may be useful to elderly patients and non-native English speaking patients and their physicians when they discuss GOC.

FUNDING SOURCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

This study was supported by a Cancer Center Program in Cancer Outcomes Research Training (PCORT) Fellowship (National Institutes of Health grant R25CA092203).

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument
  • 1
    Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007; 25: 5636-5642.
  • 2
    Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients' perceptions of their disease and its treatment. Br J Cancer. 1988; 58: 355-358.
  • 3
    Eidinger RN, Schapira DV. Cancer patients' insight into their treatment, prognosis, and unconventional therapies. Cancer. 1984; 53: 2736-2740.
  • 4
    Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA. 1998; 279: 1709-1714.
  • 5
    Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002; 346: 1061-1066.
  • 6
    Rose JH, O'Toole EE, Dawson NV, et al. Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer. J Clin Oncol. 2004; 22: 4907-4917.
  • 7
    Temel JS, Greer JA, Admane S, 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. J Clin Oncol. 2011; 29: 2319-2326.
  • 8
    Zhang B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med. 2009; 169: 480-488.
  • 9
    Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001; 22: 727-737.
  • 10
    Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: 2476-2482.
  • 11
    Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol. 2006; 24: 5265-5270.
  • 12
    Lamont EB, Christakis NA. Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med. 2001; 134: 1096-1105.
  • 13
    Haidet P, Hamel MB, Davis RB, et al. Outcomes, preferences for resuscitation, and physician-patient communication among patients with metastatic colorectal cancer. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Am J Med. 1998; 105: 222-229.
  • 14
    Temel JS, McCannon J, Greer JA, et al. Aggressiveness of care in a prospective cohort of patients with advanced NSCLC. Cancer. 2008; 113: 826-833.
  • 15
    Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008; 300: 1665-1673.
  • 16
    Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010; 363: 733-742.
  • 17
    Cassileth BR, Zupkis RV, Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980; 92: 832-836.
  • 18
    Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA. 2000; 284: 2469-2475.
  • 19
    Jacobsen PB Donovan KA, Trask PC, et al. Screening for psychological distress in ambulatory cancer patients. Cancer. 2005; 103: 1494-1502.
  • 20
    National Comprehensive Cancer Network. Distress management. Clinical practice guidelines. J Natl Compr Canc Netw. 2003; 1: 344-375.
  • 21
    Huber PJ. The behavior of maximum likelihood estimates under nonstandard conditions. In: Le Cam LM, Neyman J, eds. Proceedings of the Fifth Berkeley Symposium on Mathematical Statistics and Probability, Volume 1. Berkeley, CA: University of California Press; 1967: 221-233, 1967.
  • 22
    White H. A heteroskedasticity-consistent covariance matrix estimator and a direct test for heteroskedasticity. Econometrica. 1980; 48: 817-830.
  • 23
    Williams RL. A note on robust variance estimation for cluster-correlated data. Biometrics. 2000; 56: 645-646.
  • 24
    Jansen LA, Appelbaum PS, Klein WM, et al. Unrealistic optimism in early phase oncology trials. IRB. 2011; 33: 1-8.
  • 25
    American Society of Clinical Oncology. Quality Oncology Practice Initiative (QOPI) Summary Measures, Fall 2008. Available at: http://qopi.asco.org. Accessed August 20, 2012.
  • 26
    del Carmen MG, Joffe S. Informed consent for medical treatment and research: a review. Oncologist. 2005; 10: 636-641.
  • 27
    Gattellari M, Voigt KJ, Butow PN, Tattersall MH. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol. 2002; 20: 503-513.
  • 28
    Keating NL, Beth Landrum M, Arora NK, et al. Cancer patients' roles in treatment decisions: do characteristics of the decision influence roles? J Clin Oncol. 2010; 28: 4364-4370.
  • 29
    Wolff J, Ellis C. A brief survey of awareness of common health conditions, access to health services, and utilization of health services in limited-English-proficiency Hispanic/Latino adults. J Allied Health. 2009; 38: e43-e46.
  • 30
    Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med. 2005; 20: 800-806.
  • 31
    Fiscella K, Franks P, Gold MR, Clancy CM. Inequality in quality: addressing socioeconomic, racial, and ethnic disparities in health care. JAMA. 2000; 283: 2579-2584.
  • 32
    Ayanian JZ, Zaslavsky AM, Guadagnoli E, et al. Patients' perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol. 2005; 23: 6576-6586.
  • 33
    Lasser KE, Murillo J, Lisboa S, et al. Colorectal cancer screening among ethnically diverse, low-income patients. Arch Intern Med. 2011; 171: 906-912.
  • 34
    Schonfeld TL, Stevens EA, Lampman MM, Lyons WL. Assessing challenges in end-of-life conversations with elderly patients with multiple morbidities. Am J Hosp Palliat Care. 2012; 29: 260-267.
  • 35
    Sparks L, Nussbaum JF. Health literacy and cancer communication with older adults. Patient Educ Couns. 2008; 71: 345-350.
  • 36
    Amalraj S, Starkweather C, Nguyen C, Naeim A. Health literacy, communication, and treatment decision-making in older cancer patients. Oncology (Williston Park). 2009; 23: 369-375.
  • 37
    Koay K, Schofield P, Jefford M. Importance of health literacy in oncology. Asia Pac J Clin Oncol. 2012; 8: 14-23.
  • 38
    Davis TC, Williams MV, Marin E, et al. Health literacy and cancer communication. Cancer. 2002; 52: 134-149.

APPENDIX: Survey Instrument

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. FUNDING SOURCES
  8. REFERENCES
  9. APPENDIX: Survey Instrument

1. How would you rate the quality of information you have been given about your cancer diagnosis? This information might include the name of the cancer, where it is in your body, and whether it has spread from where it started. (please check one)

  • □ Excellent

  • □ Good

  • □ Satisfactory

  • □ Poor

  • □ Very Poor

2. How would you rate the quality of the information you have been given about cancer treatment and the treatment choices available for you? This information might include the names of the drugs used to treat the cancer and their side effects. (please check one)

  • □ Excellent

  • □ Good

  • □ Satisfactory

  • □ Poor

  • □ Very Poor

3. How would you rate the quality of the information you have been given about the goals of your cancer treatment? This information might include whether the treatment is being given in order to lessen symptoms from the cancer, to help you live longer with cancer, or to cure you of the cancer. (please check one)

  • □ Excellent

  • □ Good

  • □ Satisfactory

  • □ Poor

  • □ Very Poor

4. What did your Massachusetts General Hospital (MGH) oncologist explain the purpose of your chemotherapy to be? (please check all that apply)

  • □ Decrease the chance the disease will return also called adjuvant treatment

  • □ Provide a prolonged time without any evidence of disease also called a cure

  • □ Control the growth of the cancer without getting rid of it completely in order to prolong life

  • □ Reduce side-effects and symptoms of the cancer to promote your comfort also called palliation

5. During the discussion with your MGH oncologist in which you signed the consent form for chemotherapy, you discussed: (please check all that apply)

  • □ The reason to use the chemotherapy you are receiving (possible benefits)

  • □ The side-effects of this chemotherapy (possible risks)

  • □ Alternative chemotherapy drugs

  • □ The possibility of not taking chemotherapy at all

  • □ None of the above

6. Did your doctor give you printed handouts with information about chemotherapy drugs at the time you signed consent to begin chemotherapy?

  • □ Yes

  • □ No

7. You prefer that your cancer treatment decisions get made: (please check one)

  • □ by you with little or no input from your MGH oncologist

  • □ by you after considering your MGH oncologist's opinion

  • □ by you and your MGH oncologist together

  • □ by your MGH oncologist after considering your opinion

  • □ by your MGH oncologist with little or no input from you

8. Who came with you to the visit with your MGH oncologist when your current treatment was decided?

(please check all that apply)

  • □ Nobody

  • □ Spouse/Partner

  • □ Children

  • □ Parents

  • □ Siblings

  • □ Other relatives

  • □ Coworkers

  • □ Friends

  • □ An MD other than your current MGH oncologist

  • □ Other (please specify)______________________

9. Which of the following people were helpful to you in the decision about treatment for your cancer? (please check all that apply)

  • □ Children

  • □ Spouse/Partner

  • □ Parents

  • □ Siblings

  • □ Other relatives

  • □ Coworkers

  • □ Friends

  • □ An MD other than your current MGH oncologist

  • □ None of the above

  • □ Other (please specify here) __________________

10. Which of the following best describes your understanding of how likely it is that you will be cured of your cancer:

  • □ Very likely

  • □ Likely

  • □ Unlikely

  • □ Very Unlikely

11. During the discussion with your MGH oncologist in which you signed the consent form for chemotherapy, how much information did you receive about the purpose of your chemotherapy treatment? (please check one)

  • □ More information than you wanted

  • □ About the right amount of information

  • □ Less information than you wanted

12. People sometimes look to others in their lives for companionship, assistance, or support. (check one box on each line)

Table  . 
How often is each of the following kind of support available to you if you need it? Someone …None of the timeA little of the timeSome of the timeMost of the timeAll of the time
you can count on to listen to you when you need to talk
to give you information to help you understand a situation
to give you good advice about a crisis
to turn to for suggestions about how to deal with a personal problem

13. Did anyone come with you to your chemotherapy appointment today?

  • □ Yes. What is this person's relationship to you? (for example neighbor, close friend, aunt, sister, etc) ________________________________

  • □ No

14. Please circle the number from 0 to 10 that describes how much distress you have been experiencing in the past week, including today, with 0 meaning no distress at all and 10 meaning the most distress.1

15. If you circled a number other than zero on the thermometer above, please tell us what is the #1 cause of your distress? (please check one)

  • □ Information about the prognosis of your cancer

  • □ Information about possible chemotherapy side effects

  • □ Stress on family

  • □ Financial concerns

  • □ Something unrelated to your cancer

  • □ Other (please describe) _________________________________

16. What do you think is the purpose of the chemotherapy you are receiving today? (please check all that apply):

  • □ Cure me of the cancer, that is, make all of it go away and never come back

  • □ Help me to live longer with the cancer without getting rid of it completely

  • □ Decrease my symptoms from the cancer

  • □ Other (please describe) ________________________________

17. What do you think your MGH oncologist would say is the purpose of the chemotherapy you are receiving today? (please check all that apply):

  • □ Cure me of the cancer, that is, make all of it go away and never come back

  • □ Help me to live longer with the cancer without getting rid of it completely

  • □ Decrease my symptoms from the cancer

  • □ Other (please describe) ________________________________

18. Which of the following phrases best describes you at this time?

  • □ I am fully active and able to carry out activities the same as before my cancer diagnosis, without any restrictions.

  • □ I have difficulty with physically strenuous activity but I am able to walk and carry out work that is light or based in one location, such as light house-work or office-work.

  • □ I can walk and take care of myself, but I am not able to carry out work activities. I am up and about more than half the hours that I am awake.

  • □ I am capable only of limited self-care and spend more than half the hours that I am awake in bed or in a chair.

  • □ I am completely disabled, cannot carry on any self-care, and am totally confined to a bed or chair.

19. How many people are currently living in your household including yourself?

______ (Number of people in your household including you)

20. What is the highest level of school you have completed? (please check one)

  • □ 8th grade or less

  • □ Some high school

  • □ High school graduate or equivalent

  • □ Some college or technical school

  • □ College graduate (Associates or Bachelors)

  • □ Graduate or professional school (for example Masters, PhD, MD, JD/LLB)

21. Are you currently married, widowed, divorced, separated, or never married? (please check one)

  • □ Never married

  • □ Married/living as married

  • □ Widowed

  • □ Separated

  • □ Divorced

22. Do you consider yourself Hispanic/Latino?

  • □ Yes

  • □ No

23. Which group best describes your racial background? (please check one)

  • □ White

  • □ Black/African-American

  • □ Asian/Pacific Islander

  • □ Native American

  • □ Other (please specify) ___________________________

24. Is English your first language?

  • □ Yes

  • □ No

Thank you for your assistance. Without the generous cooperation of patients like you, we would not be able to improve our health care delivery system.

Please place your completed survey in the envelope provided and a member of the research team will collect the envelope from you today in the infusion suite.