Predictors of Newly Diagnosed Cancer Patients' Understanding of the Goals of Their Care at Initiation of Chemotherapy

Abstract

Background

The American Society of Clinical Oncology (ASCO) Quality Oncology Practice Initiative (QOPI) 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 vs. non-cure. We sought to determine if attributes of patients and initial patient-physician encounters were associated with patients' understanding of their GOC.

Methods

We surveyed 125 consecutive newly diagnosed patients 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. non-cure).

Results

91% (125/137) of eligible patients completed the survey. Only 76% (95/125) of patient-MD pairs were concordant regarding the GOC. In a multivariable logistic regression, we found that both older patients (OR 0.21, 95% CI: 0.08–0.57) and non-native English speakers had an almost 80% lower odds (OR 0.23, 95% CI: 0.05–0.93) of GOC concordance compared to younger patients and native English speakers. Patients who received printed chemotherapy information during the patient-MD consent had almost three times higher odds (OR 2.88, 95% CI: 1.24–6.68) of GOC concordance with their physician compared to those who did not receive materials.

Conclusion

Patient misunderstanding of GOC was substantial with one quarter of cancer patients misunderstanding the goal of their chemotherapy treatment. Key predictors of GOC misunderstanding included factors potentially amenable to interventions at the time of chemotherapy consent.

Background

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 potential benefits of the treatment they are agreeing to receive. Prior research suggests patients and physicians may differ in their understanding of the intent of chemotherapy or 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 prior to chemotherapy treatment 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 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, there is also the possibility that the physician discloses overly optimistic information.^{4, 12–15} Prior research shows that approximately one third of patients treated for incurable cancer overestimate their prognoses compared to their physicians.^{4, 7, 16}

We examined cancer patient-physician dyads to measure concordance in understanding the GOC of chemotherapy treatment. We dichotomized GOC into two categories, curative and non-curative, and focused on patients’ understanding of the GOC at initiation of chemotherapy to determine if patient attributes and components of the initial patient-MD encounters were associated with subsequent patient-MD GOC concordance.

Participants and Methods

We sampled all consecutive newly diagnosed patients received their first course of intravenous (IV) chemotherapy for a solid malignancy at Massachusetts General Hospital (MGH) between 12/17/2008–2/23/2009. Patients were screened for eligibility using the new patient appointment lists in the MGH chemotherapy infusion suite. All stages of disease (Stage I–IV) were eligible for participation. Patients were required to be able to read and speak English. Patients 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 invited to participate in the study. The patients were verbally consented to the study which included completion of the survey and 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 (IRB) 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, as well as 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 10 out of sample patients.

Outcome Variables

The key outcome variable in the analyses was "patient-MD 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 in order to prolong life. 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 positive responses to options 3 and/or 4 as "non-curative". If the respondent checked the last option in combination with either of the first two, the response was categorized as curative. If the respondent checked the third option with either of the first two, the response was categorized as confused because the patient indicated that the goal of chemotherapy treatment was both for cure and non-cure.

To determine the physicians’ goals of chemotherapy treatment for each patient in the study, we reviewed the MGH chemotherapy order entry (COE) system. As part of the process of writing orders for chemotherapy, COE requires physicians to answer a number of questions regarding the patient (e.g., 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 "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, we termed this "concordant". If a patient and their physician indicated a different GOC, we termed this "non-concordant". Within the "non-concordant" category, the results were subdivided into patients "more optimistic than MD" (i.e. patient indicated curative intent and physician indicated non-curative intent) and patients "less optimistic than MD" (i.e. patient indicated non-curative intent and 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 National Comprehension Cancer Network’s (NCCN) distress thermometer on 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. Additionally, given the possibility that (1) physician communication style might vary according to their cancer subspecialty (e.g., breast cancer specialists might communicate goals of care differently than lung cancer specialists) and (2) each physician was a member of only one subspecialty group, patient tumor site (as a measure of physician specialty) was considered among the possible predictor variables. Standard demographic variables (i.e., age, sex, race, education level) were also included among predictor variables as well as tumor stage.

Statistical Analysis

We determined measures of central tendency for all covariates and the outcome variable. In bivariate analyses, we compared the cohorts' covariates to the outcome variable to determine associations. Associations between categorical variables were determined using Chi-square tests and associations between categorical 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 given that multiple patients can be nested or clustered within a smaller number of providers²³. All analyses were done using STATA 11.2, College Station, TX.

Results

268 consecutive patients were screened for the study; 137 patients were eligible and 125 consented to participate (91% response rate) (Figure 1). The predominant reasons for patient ineligibility included non-chemotherapy treatment (e.g., blood transfusion) (N=36), enrollment on a clinical trial (N=20), and treatment with second line (or higher) therapies (N=17). Table 1 demonstrates the baseline characteristics of participants. The mean age was 62 years and 38% were age 65 or greater, 42% were male and 58% female, 9% were non-white and 12% indicated that English was their second language (however they were able to read and write in English without interpreter and therefore were eligible for the study). Additionally, 68% of patients reported at least college education and the mean distress score (0–10) for the sample on the day of survey was 4.31.

Figure 1. Study enrollment diagram of eligibility and response rate.

Schematic shows reasons that screened patients were deemed ineligible as well as the subsequent response rate for those who were eligible for enrollment. RR= Response Rate

Table 1.

Sample characteristics (N=125)

Variable	Number of Patients (%)
Age (mean years)	62
Sex
Female	73 (58%)
Male	52 (42%)
Race
White	114 (91%)
Non-White	11 (9%)
Native Language
English	110 (88%)
Non-English	15 (12%)
Education
HS or less	40 (32%)
>HS	84 (68%)
Primary Tumor Site
Lung	13 (10%)
GI	39 (32%)
Breast	34 (27%)
Head and Neck	14 (11%)
GU	10 (8%)
GYN	6 (5%)
Other	9 (7%)
Tumor Stage
I	18 (14%)
II	25 (20%)
III	35 (28%)
IV	41 (33%)
Other	6 (5%)
Patient Alone at Visit
Yes	16 (13%)
No	109 (87%)
NCCN Distress Score (mean)	4.31
Patient-MD Concordance	95 (76%)

Legend: Characteristics of the analytic sample of survey patients receiving first chemotherapy treatment. HS= high school; GI= gastrointestinal; GU=genitourinary, GYN=gynecologic; NCCN= National Comprehensive Cancer Network; MD= physician

Of the patient-physician dyads, 76% (95/125) were concordant and 24% (30/125) were discordant regarding GOC. The kappa coefficient was 0.44 indicating moderate agreement between patients and their physicians on this matter²⁴. Of the patient-physician dyads that were concordant (n=95), 99% (94/95) of the time the goal of treatment was curative and 1% (1/95) of the time the goal was non-curative. Of the patient-physician dyads that were discordant (n=30), in two-thirds of cases (66%, 20/30) patients reported that their physician was treating them with curative intent but their physicians reported that the intent was non-curative. In the remaining third of cases (33%, 10/30), patients 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 age. Concordant patients tended to be younger than non-concordant patients (mean age 60 years vs. 66 years, p=0.02). In addition, 40% (6/15) of participants who spoke English as a second language were discordant regarding GOC, which was approximately twice the rate (22% (24/110)) among of native English speakers (p=0.12). Concordant and non-concordant groups did not vary with respect to sex, race, education, and distress level. Nor did they vary with respect to patients' cancer site or stage (results not shown).

Table 2.

Bivariate Associations of Concordance of Patient-Physician Understandings of Goals of Care by Patient Attributes

Variable	GOC Concordant (N=95)	GOC Non-Concordant (N=30)	p-valuea
Age (mean years)	60	66	0.02
Sex			0.82
Female	56 (59%)	17 (57%)
Male	39 (41%)	13 (43%)
Race			0.79
White	87 (92%)	27 (90%)
Non-White	8 (8%)	3 (10%)
Native Language			0.12
English	86 (91%)	24 (80%)
Non-English	9 (9%)	6 (20%)
Education			0.88
HS or less	30 (32%)	10 (33%)
> HS	64 (68%)	20 (67%)
Patient Alone at Visit			0.92
Yes	12 (13%)	4 (13%)
No	83 (87%)	26 (87%)
NCCN Distress Score (mean)	4.26	4.47	0.77b

^aChi-square test, unless otherwise noted

^bt test

Legend: Results of bivariate associations of concordance of patient and physician understandings of goals of care by patient attributes. GOC= goals of care; HS= high school; NCCN= National Comprehensive Cancer Network.

In the multivariable logistic regression model (Table 3), three predictors of concordance emerged as both clinically and statistically significant. Patients aged ≥ 65 had almost 80% lower odds (OR 0.21, p=0.01) of concordance compared those patients less than age 65. Patients who spoke English as a second language had an almost 80% lower odds (OR 0.23, p=0.04) of concordance compared to patients who were native English speakers. Finally, the patients who reported received printed chemotherapy education materials at the time of chemotherapy consent had almost three times the odds (OR 2.88, p=0.01) of concordance compared to those that did not report receiving the materials.

Table 3.

Multivariable Results Describing Factors Associated with Patient-Physician Concordance Regarding Goals of Chemotherapy Treatment

Variable	Overall Patient-MD Concordance GOC (95% CI)	p-value
Age
< 65 years	1.00 (referent)	-
≥ 65 years	0.21 (0.08–0.57)	0.01
Sex
Female	1.00 (referent)	-
Male	1.09 (0.43–2.74)	0.86
Race
Non-White	1.00 (referent)	-
White	0.99 (0.28–3.51)	0.99
Education
> HS	1.00 (referent)	-
HS or Less	1.25 (0.51–3.08)	0.62
Native Language
English	1.00 (referent)	-
Non-English	0.23 (0.06–0.93)	0.04
Printed Materials Provided
No	1.00 (referent)	-
Yes	2.88 (1.24–6.68)	0.01
Patient Alone at Visit
No	1.00 (referent)	-
Yes	0.52 (0.13–2.17)	0.37
NCCN Distress Score
<4	1.00 (referent)	-
≥4	1.05 (0.38–2.90)	0.93

Legend: Results of the multivariable logistic regression model estimating odds of association between patient factors and concordance between patient and physicians regarding goals of chemotherapy treatment. GOC= goals of care; HS= high school; MD= physician; NCCN= National Comprehensive Cancer Network.

Discussion

We demonstrate that the concordance of patient-physician dyads regarding the GOC was the same in only 76% of cases and that 24% (30/125) 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 when their physicians stated intent was not curative. This finding resonates with previously published reports of discordance of physician-patient dyads on the matter of cancer patient prognosis where at least one-third of advanced cancer patients have been shown to hold more optimistic survival expectations (i.e., prognoses) than their physicians.^{2, 7, 12}

This work extends the existing literature on cancer patients’ illness understanding by identifying yet another index of patient cancer care (i.e., treatment goals) where there appears to be patient misunderstanding, generally optimistic, regarding their illness. We found 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 such as these have the potential to lead to future requests for more intense, but often futile chemotherapy.^4–6

While some of the GOC non-concordance in the incurable population may be attributed to unrealistic optimism,²⁴ the quality of the pre-treatment patient-physician discussions likely impact this measure as well. At least two 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 two findings point to potentially amenable aspects of the patient-physician encounter that could potentially lead to better GOC understanding 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 ASCO Quality Oncology Practice Initiative (QOPI) measure²⁵ and it is intended to be a proxy for an open, honest, and informative conversation between provider and patient that includes all information - including the goal of care- needed for a patient to understand all treatment possibilities and their likely outcomes.^26,27 Misunderstanding the GOC (e.g. curative vs. non-curative) may lead patients to make treatment decisions they otherwise would not have made.²⁸ The 20/125 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 cure was not possible. Additionally, 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 for cure.

Patient age was one of the patient characteristics that predicted non-concordance regarding GOC. This finding is interesting in light of other research that shows providers are more likely to have a frank prognosis discussion with older patients.¹² Our finding that non-native English speakers experience greater discordance in understanding of GOC compared to native English speakers has not, to our knowledge, 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 two findings suggest communication between providers and patients is at least a component of the problem. Perhaps longer treatment planning visits with 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 co-morbidities 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 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 compliance with treatment, and decreased participation in clinical trials.^37,38

There are some potential limitations of this study. First, the study was conducted at a single institution with few minority patients. Despite this, we did have 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. Additionally, there was no detailed evaluation or any 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 utilization according to patient-physician convergence vs. non-convergence 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, with most patients deviating toward optimistic misunderstanding of prognosis. Our research advances the literature on cancer patients' apparent misunderstanding of the goals of chemotherapy treatment by identifying two patient characteristics, age 65 and older and non-native English speakers, that are associated with 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.

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 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)

    How often is each of the following kinds of support available to you if you need it? Someone …	None of the time	A little of the time	Some of the time	Most of the time	All 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.

    

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.