Decisional Control Preferences of Hispanic Patients With Advanced Cancer From the United States and Latin America

Decisional Control Preferences of Hispanic Patients With Advanced Cancer From the United States and Latin America

376 Journal of Pain and Symptom Management Vol. 46 No. 3 September 2013 Original Article Decisional Control Preferences of Hispanic Patients With ...

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376

Journal of Pain and Symptom Management

Vol. 46 No. 3 September 2013

Original Article

Decisional Control Preferences of Hispanic Patients With Advanced Cancer From the United States and Latin America Sriram Yennurajalingam, MD, MS, Henrique A. Parsons, MD, MS, Eva Rossina Duarte, MD, Alejandra Palma, MD, Sofia Bunge, MD, J. Lynn Palmer, PhD, Marvin Omar Delgado-Guay, MD, Julio Allo, MPH, and Eduardo Bruera, MD Department of Palliative Care and Rehabilitation Medicine (S.Y., H.A.P., M.O.D.-G., J.A., E.B.) and Department of Biostatistics (J.L.P.), The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA; Instituto de Cancerologia (E.R.D.), Guatemala City, Guatemala; Pontificia Universidad Catolica de Chile (A.P.), Santiago, Chile; and Palliative Care Unit (S.B.), Hospital Tornu, Programa Argentino de Medicina Paliativa-Fundacio n FEMEBA, Buenos Aires, Argentina

Abstract Context. Understanding cancer patients’ preferences in decisional roles is important in providing quality care and ensuring patient satisfaction. There is a lack of evidence on decisional control preferences (DCPs) of Hispanic Americans, the fastest growing population in the U.S. Objectives. The primary aims of this study were to describe DCPs of Hispanics with advanced cancer in the U.S. (HUSs) and compare the frequency of passive DCPs in this population with that of Hispanics with advanced cancer in Latin America (HLAs). Methods. We conducted a prospective survey of patients with advanced cancer referred to outpatient palliative care clinics in the U.S., Chile, Argentina, and Guatemala. Information was collected on sociodemographic variables, Karnofsky Performance Scale scores, acculturation (Marin Acculturation Assessment Tool), and DCP (Control Preference Scale). Chi-square tests were used to determine the differences in DCPs between HUSs and HLAs. Results. A total of 387 patients were surveyed: 91 in the U.S., 100 in Chile, 94 in Guatemala, and 99 in Argentina. The median age of HUSs was 56 years, 59% were female, and the median Karnofsky Performance Scale score was 60; the corresponding values for HLAs were 60 years, 60%, and 80. HLAs used passive DCP strategies significantly more frequently than HUSs did with regard to the involvement of the family (24% vs. 10%; P ¼ 0.009) or the physician (35% vs. 16%; P < 0.001), even after age and education were controlled for. Eighty-three percent

Drs. Yennurajalingam and Parsons contributed equally to this work. Address correspondence to: Eduardo Bruera, MD, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, The University of Texas M.D. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Anderson Cancer Center, 1515 Holcombe Boulevard, Houston, TX 77030, USA. E-mail: [email protected] mdanderson.org Accepted for publication: August 29, 2012.

0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2012.08.015

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of HUSs and 82% of HLAs preferred family involvement in decision making (P ¼ non-significant). No significant differences were found in DCPs between poorly and highly acculturated HUSs (P ¼ 0.91). Conclusion. HUSs had more active DCPs than HLAs did. Among HUSs, acculturation did not seem to play a role in DCP determination. Our findings confirm the importance of family participation for both HUSs and HLAs. However, HUSs were less likely to want family members to make decisions on their behalf. J Pain Symptom Manage 2013;46:376e385. Ó 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Decision-making preferences, palliative care, cancer, Hispanic cancer patients, acculturation

Introduction Understanding cancer patients’ preferences for decisional roles is important in providing quality cancer care and ensuring patient satisfaction.1e10 This understanding has become especially important for Hispanics, the fastest-growing minority group in the U.S., which accounted for 16.3% of the population in 201011 and is projected to account for 24.4% by 2050.12 In the U.S., Hispanics differ from whites and African Americans by social, economic, cultural, and demographic characteristics.13,14 There are limited published data on the health care decisional control preferences (DCPs) of Hispanic patients in the U.S. (HUSs) with advanced cancer. There are also few studies regarding the preferences of Hispanic patients in Latin America (HLAs);9,15e17 this information is important because it may elucidate DCPs of recent immigrants to the U.S.9,15e19 To better understand health care DCPs among HUSs and HLAs, we conducted a multicenter prospective survey of patients referred to outpatient specialist palliative care services in the U.S. and in three Latin American countries. On the basis of previous reports, we hypothesized that HLAs would prefer passive decisional roles compared with HUSs. The primary aims of our study were to describe DCPs of HUSs and compare the frequency of passive DCPs of HUSs and HLAs. Our secondary aims were to determine the preferences of HUSs and HLAs for family participation in decision making and whether acculturation of

Latin Americans in the U.S. influences these preferences.

Methods We conducted a prospective survey of 387 patients with advanced cancer who were referred to outpatient specialist palliative care services in the U.S., Chile, Argentina, and Guatemala. In the U.S., the study was conducted at the outpatient Supportive Care Center at The University of Texas M.D. Anderson Cancer Center in Houston, Texas. In Latin America, the study was conducted at the outpatient palliative care clinics of the Hospital Sotero del Rı´o in Santiago, Chile; Torn u Hospital in Buenos Aires, Argentina; and the Instituto de Cancerologia in Guatemala City, Guatemala. The institutional review boards of all four institutions approved this protocol, and all participants provided written informed consent. All participants completed the survey with the help of a research coordinator during the visit to the outpatient center.

Participants A patient was enrolled in the study at the time of a follow-up visit to the supportive or palliative care clinic if the following eligibility criteria were met: 1) had been diagnosed with advanced cancer (locally recurrent or metastatic), 2) age $ 18 years, 3) normal cognitive status as determined by the interviewer (by the subject’s ability to understand the nature of the study and consent process), and 4) availability of a designated caregiver.

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Participants in the U.S. study center were required to be of self-reported Hispanic descendance, to be first- or second-generation immigrants, and to have resided in the U.S. for at least five years. The time frame of five years was used so that the participant would have been reasonably familiar with the U.S. health care system and acquired financial insurance coverage that allowed them access to a similar level of care as other U.S. residents. Participants in each of the Latin American centers had to be of Chilean, Argentinian, or Guatemalan descendance, as appropriate to the outpatient palliative care clinic. The patients and caregivers in Latin American countries share language, ethnicity, socioeconomic status, religion, and family roles. Because of these similarities, we treated these patients as a single population.

Outcome Measures Sociodemographic Characteristics. Data on sociodemographic variables, including patients’ age, gender, cancer diagnosis, marital status, education, employment, and occupation, were collected from patient records. Performance Status. The Karnofsky Performance Status Scale was used to assess patient performance status. Marin Acculturation Assessment Tool. Acculturation of Hispanics in the U.S. was determined using the Marin Acculturation Assessment Tool. This tool has been widely used in the Hispanic population and correlates highly with respondents’ generation, length of residence in the U.S., age at arrival, and ethnic self-identification.20 The tool, which has a reported alpha coefficient of 0.92, comprises 12 questions, with answers ranked on a scale of 1e5. The answers are summed and averaged, and the tool yields a score ranging from 1 to 5, with higher scores representing higher acculturation. Patients who score 2.99 or less are considered poorly acculturated and those who score higher as highly acculturated.20 Control Preference Scale. The Control Preference Scale was designed by Degner and Sloan21 to assess patients’ DCPs. This tool has been previously used by our team.7,22 For the

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present study, the tool was translated to Spanish by bilingual investigators of our team, and independent back-translation by bilingual Latin American natives was conducted to determine semantic and linguistic equivalence between the versions. To assess the patients’ DCPs about their doctors’ and families’ role in health care decisions, we made minor modifications to the Control Preference Scale.21,23 First, the statement ‘‘With regard to the participation of my doctor in the decisions about my care’’ preceded a list of five possible answers regarding patient and physician participation in discussing or making decisions about care. This list also includes responses for ‘‘I don’t know’’ and ‘‘I prefer not to answer’’ (Appendix I). Second, the statement ‘‘With regard to the participation of my family in the decisions about my care’’ preceded a list of five options including all the possibilities of patient and family participation in discussing and/or making decisions about the care. This list also includes responses for ‘‘I don’t know’’ and ‘‘I prefer not to answer’’ (Appendix II). And third, the statement ‘‘With regard to the relationship between my family and my doctor in the decisions about my care’’ preceded a list of six options including all the possibilities of family and physician participation in discussing and/ or making decisions about the care. This list also includes responses for ‘‘I don’t know’’ and ‘‘I prefer not to answer’’ (Appendix III). To assess DCPs of the patient, family, and physician concomitantly, we made minor modifications to the Control Preference Scale.21,23 The following statement preceded 15 options for answers: ‘‘In my opinion, decisions about my care should be made .’’ The patient was then directed to choose one from a list of 15 options that included all the possibilities of patient, family, and physician participation in assessing role preferences about their care. All 15 options are of a general nature, as previously determined by Degner and Sloan21 and Cassileth et al.24 (Appendix IV). Patients who chose Options 1 or 2 in the patient-physician survey (Appendix I) or patient-family survey (Appendix II) were considered to have an active DCP; those who chose Option 3, a shared DCP; and those who selected Options 4 or 5, a passive DCP. However, patient responses to the family-

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physician survey (Appendix III) were classified as 1) family and physician should not make decisions, 2) family and physician should share decision making, 3) family should decide after hearing physician’s opinion, or 4) physician should decide after hearing family’s opinion. For the patient-physician-family survey (Appendix IV), patients were considered to have an active DCP if they chose Options 1e4, a passive DCP if they chose Options 5e12, and a shared DCP if they selected Options 13e15. The patient-family-physician survey Items 3e8, 11, 12, 14, and 15 indicated a DCP that involved the family.

Statistical Analyses Descriptive statistics were used to summarize the data. The Chi-square test and Fisher exact test were performed to determine associations between categorical variables. Differences between continuous variables were analyzed using t-tests for normally distributed data and Wilcoxon rank-sum tests for nonnormally distributed data. Multivariate logistic regression was used to correct for age and education when comparing HUSs and HLAs with regard to DCPs. Our primary objective was to determine whether there are significant differences in passive DCPs between an HUS group of patients with advanced cancer and patients with advanced cancer from Argentina, Chile, and Guatemala. The sample size was calculated based on the assumption that 15% of patients in the HUS group would prefer that decisions be made for them (passive DCP making) and that this preference would approximately double in the other group on the basis of prior studies by our team in patients with advanced cancer7 and breast cancer,21 in which the proportion of passive DCP was 17% and 11%, respectively. We also assumed that passive DCP would be about twice as prevalent among HLA patients. Therefore, we planned to recruit 100 patients in the HUS group and 300 patients in the HLA group (100 from Chile, 100 from Guatemala, and 100 from Argentina), so that we would be able to detect differences in proportions of preference for passive DCP between the two groups of 11.5% or more (15% vs. 26.5%), with a onesided significance level of P < 0.05 and 80% statistical power.

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Family involvement was calculated from the responses to the Control Preference Scale patient-family-physician items (Appendix IV) in which DCP involved a family member. These included Items 3e8, 11, 12, 14, and 15. P < 0.05 was considered significant. Analyses were performed using SPSS 16.0 software for Windows (SPSS Inc., Chicago, IL).

Results The HUS study participants were younger, with a median age of 56 years (interquartile range [IQR] 45e63 years) and that of the HLA study participants was 60 years (IQR 49e71 years; P ¼ 0.002). HUSs had better performance status, with a median score of 60 (IQR 50e80), and that of HLAs was 80 (IQR 70e80; P < 0.001). Education level was significantly lower among HLAs than among HUSs. Gender, marital status, employment status, and site of diagnosed cancer did not differ significantly between the two groups (Table 1). Among the HUS patients, the majority indicated that both their country of origin and that of their parents was the U.S./Puerto Rico or Mexico (Table 2). HLAs preferred passive decisional control more frequently than HUSs in the patient-physician survey (P < 0.001), the patient-family survey (P ¼ 0.009), and the patient-family-physician survey (P < 0.001) (Table 3). After age (cutoff 65 years) and education (less than high school vs. some college or higher) were controlled for, HLAs still preferred passive decisional control with regard to physician involvement (odds ratio 3.8; P < 0.001) and family involvement (odds ratio 2.4; P ¼ 0.03). HLA and HUS preferences did not differ significantly in the family-physician survey (Table 3). A preference for family involvement in health care decision making was expressed by 76 of the 91 HUSs (83.5%) and 230 of the 293 HLAs (78.4%) (P ¼ not significant) (Table 4). In all three Latin American countries, most HLAs had a shared DCP (Table 4). The Argentinian population was the least likely to have a passive DCP. The mean (SD) acculturation score for highly acculturated participants was 3.87 (0.67), and the median (IQR) acculturation

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Table 1 Demographic and Clinical Characteristics of the Study Participants (N ¼ 387) Characteristics Gender Female Marital status Single Married/lives with partner Divorced/separated Widowed No data Employment status Full-time Part-time Retired Homemaker Unemployed Other No data Education Less than high school High school/tech school Some college or higher No data Diagnosis Head and neck Lung Gastrointestinal Genitourinary (not prostate) Prostate Gynecologic (not breast) Breast Other

U.S. (n ¼ 91)

Latin America (n ¼ 296)

n (%)

n (%)

59 (65)

175 (60)

0.330

13 57 15 5 1

(14) (63) (16.5) (5.5) (1)

34 191 32 35 4

(11.5) (64.5) (11) (12) (1)

0.281

15 3 33 14 18 7 1

(17) (3) (36) (15) (20) (8) (1)

22 18 103 81 45 23 4

(7) (6) (35) (27) (15) (8) (1)

0.062

24 30 40 1

(26) (33) (40) (1)

188 83 22 3

(64) (28) (7) (1)

<0.001

8 9 22 5 6 15 12 14

(9) (10) (24) (5) (7) (16) (13) (15)

11 38 74 12 24 44 40 53

(4) (13) (25) (4) (8) (15) (14) (18)

0.65

score was 4 (3e4.08). For poorly acculturated participants, the corresponding scores were 1.59 (0.61) and 1.43 (1e2). No significant differences were found in DCPs between highly and poorly acculturated HUSs (P ¼ 0.91) (Table 5). Therefore, we did not take acculturation into account in further analyses.

Discussion In this study, we found that the use of passive DCP was significantly higher among HLAs than among HUSs. HUSs more frequently reported a preference for active DCP with their physician and family. Our study is the first to directly compare DCPs of HUSs and HLAs using the Control Preference Scale.5,25 Prior studies reported that HUSs showed a tendency to prefer that the physician make the decisions related to their health care.26 We found that the passive DCP among HUSs resembled those of white Americans.7,22,25,27,28

P

Our study is also the first published study of patients with advanced cancer to evaluate whether the degree of acculturation is associated with DCPs. We found no significant statistical difference in DCPs based on acculturation in HUSs. These findings suggest that the change in DCPs among Hispanics when they immigrate to the U.S. occurs independent Table 2 Country of Origin of Hispanic Patients in the U.S. and Their Parents (n ¼ 91 Patients) Country of Birth

Patient

Patient’s Mother

Patient’s Father

Bolivia Colombia Cuba El Salvador Guatemala Mexico Nicaragua Peru Spain U.S./Puerto Rico Venezuela Total

1 1 2 4 1 28 0 1 0 51 2 91

1 1 2 4 1 36 1 1 1 41 2 91

1 1 3 4 1 36 1 1 1 41 1 91

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Table 3 Distribution of Decisional Role Preferences According to the Independent Relationships Between Patient and Physician, Patient and Family, Family and Physician and the Relationships Among Patient, Family, and Physician (N ¼ 386) Survey Patient and physician Passive Shared Active Don’t know/prefer not to answer Patient and family Passive Shared Active Don’t know/prefer not to answer Family and physician Family and physician should not make decisions Family and physician should share decision making Family should decide after hearing physician’s opinion Physician should decide after hearing family’s opinion Don’t know/prefer not to answer Patient, family, and physician Passive Shared Active

of acculturation. The Marin Acculturation Assessment Tool emphasizes language (eight of the 12 items are language related). Our findings suggest that HUSs prefer more active DCPs than HLAs do. More research is needed to better characterize the role of acculturation and DCPs among Hispanics. Allowing patients to make DCPs is a major predictor of patient satisfaction1,2,4 and is especially important for Hispanics as they are the fastest growing minority group in the U.S. Hispanic migration is still ‘‘young,’’ and many Hispanic patients communicate mainly in Spanish.5,16,25 There are many assumptions about how Hispanics develop their DCPs. It is thought that they are more likely to prefer a passive DCP and also to favor family participation.9,16 The findings in our present study that HUSs more frequently preferred active (52%) than passive (14%) or shared (34%) health care DCPs with regard to both physician and family (Table 3) is important. However, because almost half of the HUSs preferred shared or passive DCPs, physicians should actively assess a patient’s DCP to ensure optimal communication and patient satisfaction with cancer care. HLAs preferred passive decisional control more frequently than HUSs did with regard

U.S. (n ¼ 90)

Latin America (n ¼ 296)

n (%)

n (%)

14 50 21 5

(16) (56) (23) (7)

9 (10) 45 (50) 32 (36) 4 (4) (n ¼ 90) 14 (16) 37 (41) 11 (12) 18 (20) 10 (11) (n ¼ 91) 13 (14) 31 (34) 47 (52)

103 144 35 14

(35) (49) (12) (5)

69 (24) 144 (49) 64 (22) 17 (6) (n ¼ 295) 24 (8) 130 (44) 38 (13) 86 (29) 17 (6) (n ¼ 293) 69 (23.5) 151 (51.5) 73 (25)

P 0.001

0.009

0.062

<0.001

to family (24% vs. 10%) and physician (35% vs. 26%). Physicians in Latin America may take a more paternalistic approach to health care than do those in the U.S. However, even among HLAs, an active DCP was used by 25% of patients, emphasizing the need for personalized assessment of DCPs in both regions. Our findings also reflect the importance that HLAs give to family participation; the family may even serve as deliberators in DCPs. This observation is important because foreign Hispanic patients coming to the U.S. for the sole purpose of getting medical care might also more frequently endorse (and prefer) physician-driven decisions. This study confirms the importance of family participation in DCPs for both HUSs and HLAs.15,29 Although both HUSs and HLAs wanted family participation, HUSs were much less likely to want family members to make decisions on their behalf. We found that the Argentinian population was less likely to have passive DCPs than the Guatemalan and Chilean populations. These differences might be the result of cultural and socioeconomic differences between Argentina and the other two countries. More research should be conducted to better characterize this difference.

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Table 4 DCPs According to the Relationships Among Patient, Family, and Physician, by Study Center Latin America, by Country

DCP Passive By my family By my family, after hearing my opinion or input By my family, after hearing my doctor’s opinion or input By my family, after hearing both my doctor’s and my opinion or input By the doctor By the doctor, after hearing my opinion or input By the doctor, after hearing my family’s opinion or input By the doctor, after hearing both my family and my opinion or input Total passive Shared With my doctor With my family With both my family and doctor Total shared Active By myself By myself, after hearing the doctor’s opinion or input By myself, after hearing my family’s opinion or input By myself, after hearing both my family and the doctor’s opinion or input Total active

U.S. (n ¼ 91)

Latin America (n ¼ 293)

Chile (n ¼ 100)

Guatemala (n ¼ 94)

Argentina (n ¼ 99)

n (%)

n (%)

n (%)

n (%)

n (%)

2 (2) 0 (0) 2 (2)

2 (0) 2 (1) 13 (5)

2 (2) 0 (0) 4 (4)

0 (0) 1 (1) 6 (6)

0 (0) 1 (1) 3 (3)

4 (4)

9 (3)

4 (4)

4 (4)

1 (1)

0 (0) 2 (2) 1 (1)

12 (4) 3 (1) 11 (4)

2 (2) 1 (1) 7 (7)

7 (7) 0 (0) 2 (2)

3 (3) 2 (2) 2 (2)

2 (2)

17 (6)

7 (7)

6 (6)

4 (4)

13 (14)

69 (24)

27 (27)

26 (28)

16 (16)

6 2 52 60

1 2 37 40

8 2 41 51

1 4 26 31

(1) (4) (29) (34)

15 6 130 151

(5) (2) (44) (51)

(6) (2) (52) (60)

(1) (2) (39) (42)

(8) (2) (41) (52)

4 (4) 8 (9)

2 (0.6) 20 (7)

1 (1) 1 (1)

0 (0) 11 (12)

1 (1) 8 (8)

1 (1) 34 (37)

5 (1.7) 35 (15.7)

0 (0) 11 (11)

3 (3) 14 (15)

2 (2) 21 (21)

47 (52)

73 (25)

13 (13)

28 (30)

32 (32)

DCP ¼ decisional control preference.

We hypothesize that because of the language, ethnicity, and social structure in Latin America, the differences in DCPs might indicate not just the patient’s and family’s view but also gained experience with how much leeway doctors give the patient in participating in decision making, and this may well differ in the U.S. and in Latin America. Further studies are required to explore these differences. For reasons of access to the health care system and familiarity with U.S. society, we Table 5 Distribution of DCPs of U.S. Hispanic Study Participants (Patients), by Acculturation Status

DCP Passive Shared Active

Highly Acculturated (n ¼ 51)

Poorly Acculturated (n ¼ 40)

n (%)

n (%)

P

17 (33) 8 (16) 26 (51)

14 (35) 5 (12.5) 21 (52.5)

0.91

DCP ¼ decisional control preference.

required that an HUS study participant had to have resided in the U.S. for at least five years so that they had had a chance to totally immerse themselves in the society. Hispanic patients more recently arrived in the U.S. may have DCPs that are more similar to that of HLAs than that of HUSs. Research is needed to explore this association. Our preliminary data regarding acculturation revealed no significant difference between the two groups. Our study has some practical clinical implications. Compared with HLAs, HUSs preferred active (52%) or shared (34%) DCPs in the vast majority of cases and were much less likely to prefer that their family make decisions on their behalf (only 10% of patients). Perhaps the most important finding in both cohorts is that there was wide interindividual variation in DCPs. The best approach for patient care may be to ask each patient his or her preference for the role of the physician and family in health care decision making rather than to make an assumption.7

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An important limitation of our study was the lack of a non-Hispanic U.S. patient population to serve as a control to compare with HUSs and HLAs. More research is needed to better delineate the differences and contributors to DCPs among U.S. patients of Hispanic and non-Hispanic descent. Another limitation is that to assess a patient’s preferences about the family’s role and about the interaction between the doctor and family in the health care DCPs, we had made a minor modification to the Control Preference Scale by adding the term ‘‘input’’ for Item 2. Although we felt that this change clarified the item, it should be validated in future studies. We also were unable to compare socioeconomic factors in the HLA groups with the general populations of their respective countries. Future studies should explore this information because it could influence DCPs of these patients.

Conclusions Patients of Hispanic origin in the U.S. preferred active decisional control significantly more than did patients from Latin American countries. There were no significant differences in the preferred DCPs among HUSs based on acculturation; both groups endorsed family participation in decision making.

Disclosures and Acknowledgments Preparation of this manuscript was supported in part by the M.D. Anderson Cancer Center support grant CA 016672; American Cancer Society grant RSG-11-170-01-PCSM to Dr. Yennurajalingam; and National Institutes of Health grants R01NR010162-01A1, R01CA1222292.01, and R01CA124481-01 to Dr. Bruera. The authors declare no conflicts of interest. The authors sincerely thank Elizabeth L. Hess, MEM, ELS (D), for editorial support.

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2. Gattellari M, Butow PN, Tattersall MHN. Sharing decisions in cancer care. Soc Sci Med 2001;52: 1865e1878. 3. Pieterse AH, Baas-Thijssen MC, Marijnen CA, Stiggelbout AM. Clinician and cancer patient views on patient participation in treatment decisionmaking: a quantitative and qualitative exploration. Br J Cancer 2008;99:875e882. 4. Davidson JR, Brundage MD, Feldman-Stewart D. Lung cancer treatment decisions: patients’ desires for participation and information. Psychooncology 1999;8:511e520. 5. Hubbard G, Kidd L, Donaghy E. Preferences for involvement in treatment decision making of patients with cancer: a review of the literature. Eur J Oncol Nurs 2008;12:299e318. 6. Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MHN. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol 2005;16:1005e1053. 7. Bruera E, Sweeney C, Calder K, Palmer L, Benisch-Tolley S. Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 2001;19:2883e2885. 8. Stalmeier PFM, van Tol-Geerdink JJ, van Lin ENJT, et al. Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy. J Clin Oncol 2007;25: 3096e3100. 9. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life. JAMA 2001; 286:2993e3001. 10. Gattellari M, Voigt KJ, Butow PN, Tattersall MHN. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 2002;20:503e513. 11. Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care 2010; 16:688e696. 12. Passel JS. Size and characterstics of unauthorized migrant population in US. Washington, DC: Pew Hispanic Center, 2006. 13. Ortega AN, Fang H, Perez VH, et al. Health care access, use of services, and experiences among undocumented Mexicans and other Latinos. Arch Intern Med 2007;167:2354e2360.

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29. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. J Am Med Assoc 1995;274:820e825.

Appendix I Control Preference Scale (Patient-Physician Items) 1. 2. 3. 4. 5.

I I I I I

would would would would would

prefer prefer prefer prefer prefer

to make the treatment decisions on my own. to make the treatment decisions by myself after hearing my doctor’s opinion or input. to make the decisions together with my doctor. that the doctor make the decisions after talking to me and hearing my opinion. that my doctor make the decisions on his/her own.

Appendix II Control Preference Scale (Patient-Family Items) 1. 2. 3. 4. 5.

I I I I I

would would would would would

prefer prefer prefer prefer prefer

to make the treatment decisions on my own. to make the treatment decisions by myself after hearing my family’s opinion or input. to make the decisions together with my family. that my family make the decisions after talking to me and hearing my opinion. that my family make the decisions on his/her/their own.

Appendix III Control Preference Scale (Family-Physician Items) 0. 1. 2. 3. 4. 5.

I I I I I I

believe that my family and my doctor on their own should not make treatment decisions about my care. would prefer that my family makes the treatment decisions on their own. would prefer that my family makes the decisions on their own after hearing my doctor’s opinion or input. would prefer that my family makes the decisions together with my doctor. would prefer that my doctor makes the decisions after talking to my family and hearing their opinion. would prefer that my doctor makes the decisions on his/her own.

Vol. 46 No. 3 September 2013

DCPs and Hispanic Cancer Patients

Appendix IV Control Preference Scale (Patient-Family-Physician Items) 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.

By myself. By myself after hearing the doctor’s opinion or input. By myself, after hearing my family’s opinion or input. By myself after hearing both my family and the doctor’s opinion or input. By my family. By my family after hearing my opinion or input. By my family, after hearing my doctor’s opinion or input. By my family, after hearing both my doctor’s and my opinion or input. By the doctor. By the doctor after hearing my opinion or input. By the doctor after hearing my family’s opinion or input. By the doctor after hearing both my family’s and my opinion or input. Shared between myself and the doctor. Shared between myself and my family. Shared between myself and both my family and doctor.

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