Cancer Patient Ethnicity and Associations with Emotional
Distressthe 6th Vital Sign: A New Look at Dening Patient Ethnicity in a Multicultural Context Bejoy C. Thomas Linda E. Carlson Barry D. Bultz Published online: 5 September 2008 Springer Science+Business Media, LLC 2008 Abstract Variations in access to care, utilization of available resources and treatment outcomes in the context of ethnicity have been recognized, but very little research of this nature exists in the oncology context. The present paper is an in-depth analysis of data on a large represen- tative sample of Canadian cancer patients with a focus on the role of ethnicity, its association to psychological distress, and its impact on the cancer experience. Because of a heterogeneous representation of ethnic self-identi- cations which were not easily grouped or classied, English as a second language was considered as a surrogate marker to ethnicity. People who self-reported to be from an English-speaking country were grouped together and compared to those hailing from countries which do not have English as a primary language. In a hierarchical logistic regression model (n = 2,402) the demographic and cancer-related variables associated with signicant clinical distress in the rst block were gender (male, except those with prostate cancer), age less that 68 years, less than a year since diagnosis, diagnosis of lung cancer, and recur- rent disease. In the second block, after controlling for the inuence of these factors, patient-reported ethnicity (being originally from a non-English speaking country) added signicantly to the prediction of patient distress. Though compelling, there is a need to understand the relationship between the ethnic features and language (English versus non-English language). A hypothesis is presented as an attempt to understand an individuals ethnicity within the framework of a multicultural society. Keywords Ethnicity Distress Screening Acculturation Malignant neoplasm Background Incidence of high levels of emotional distress amongst cancer patients in North America ranges from 35% to 45% [1, 2]. Similar incidence rates are reported from Asia [35], the Middle East [68], Europe [911] and South America [12]. Awareness of this problem is reected in the Cana- dian Strategy for Cancer Controls endorsement of Emotional Distress as the 6th vital sign in Cancer Care in June 2004 [13, 14] with the implication that psychosocial distress be monitored and treated in all patients on a regular basis. It has also been recommended as a standard of care by the Institute of Medicines 2008 report [15], and become part of the Canadian Council of Health Services Accredi- tations 2009 guidelines [16]. Clinical studies have repeatedly demonstrated patient benets from psychosocial care in terms of improved quality of life, decreased distress and better treatment adherence [1, 2, 1719]. However, these intervention studies have rarely been ethnicity-spe- cic, with the focus of this literature almost entirely on non-Hispanic Whites [20]. This is a problem, because ethnic minorities have higher rates of some cancers, as well as other documented out- come disparities compared to Caucasians. For example, in the United States (U.S.), the cancer death rate is on a steadily declining trend, though not uniformly across ethnic B. C. Thomas (&) L. E. Carlson B. D. Bultz Department of Psychosocial Resources, Tom Baker Cancer Centre - Holy Cross Site, Alberta Cancer Board, 2202 2nd St. S.W., Calgary, AB, Canada T2S 3C1 e-mail: tombejoy@cancerboard.ab.ca; bejoyct@gmail.com B. C. Thomas L. E. Carlson B. D. Bultz Department of Oncology, University of Calgary, Calgary, AB, Canada 1 3 J Immigrant Minority Health (2009) 11:237248 DOI 10.1007/s10903-008-9180-0 and racial groups [21]. This is especially the case among Black men, who have 25% higher incidence rates and 43% higher mortality rates than White men for all cancers combined. Canadian cancer statistics disaggregated by race and/or ethnicity are not currently available [22]a large gap in our understanding of the magnitude of any Canadian disparities. Ethnic disparities are also present in terms of screening behavior and follow-up of abnormal ndings [20, 2326], length of survival [21, 27, 28], quality of life [20, 29, 30], adherence to treatment [31], and access to ade- quate care and interactions with physicians [20, 32], all to the disadvantage of ethnic minority populations. These disparities are not necessarily because people are from a different country or racial background. In fact, the psychosocial impact of cancer seems to be globally con- sistent and comparable across nations when people are assessed in their home country. For example, psychosocial oncology research from Indiain general cancer popula- tions [33] and breast cancer survivors [34], Chinain breast cancer survivors [35] and Japanin breast recon- struction patients [36], show comparable psychosocial distress to ndings seen in non-Hispanic White cancer patient populations in the U.S. [20, 33, 34]. Hence, it appears these ethnic disparities are related to the status of individuals as immigrants to a new country, rather than their heritage or racial background. A recent review has highlighted the signicant lack of attention to the inclusion of minorities (or other under- served populations) in current cancer survivorship initiatives, pointing out a need for culturally sensitive programs [37]. It is recognized that the road of cancer diagnosis, treatment and survivorship is traveled differently by individual cancer patients depending on an individuals ethnicity, socio-economic status, culture, gender and age [37]. However, despite such recognition this aspect has received little serious empirical investigation. The goal of the present study is to explore the relationships between patient ethnicity and emotional distress. Current Study In 2004 a study from the Tom Baker Cancer Centre mea- sured levels of distress and fatigue in cancer patients [1]. Patient ethnicity was one of the questions that were posited to the respondents. The published study did not explore in detail the role of ethnicity in distress or psychosocial treatment preferences. We now present the results of the relationship of patient ethnicity to emotional distress. The study was approved by the Conjoint Health Research Ethics Board of the Faculty of Medicine and Tom Baker Cancer Centre (TBCC). More than 3,000 patients of het- erogeneous diagnoses were assessed using the Brief Symptom Inventory-18 (BSI-18) [38] to identify distress. Further details on the process of data collection are docu- mented elsewhere [1]. Methods Measures Brief Symptom Inventory 18 Published in 2001 [38], the BSI 18-item instrument is shortened from the original Symptom Checklist (SCL-90- R) [39] and the 53-item Brief Symptom Inventory (BSI) [40] and has been normed for use with cancer patients. The BSI yields three subscale scores: Somatization, Depression and Anxiety, with internal consistencies ranging from 0.74 to 0.89, and correlations with the longer BSI ranging from 0.91 to 0.96. A composite score, the General Severity Index (GSI), also shows similar high levels of reliability. Average completion time is 13 min. In screening for distress in the cancer population cut-off values as dened by Zabora et al. [41] were used. Classifying Ethnicity as a Psychological Construct Patients were given the opportunity to self-report their ethnic status by lling in a blank labeled ethnicity. This self- reported ethnic identity yielded 82 different categories of single ethnicity (e.g. Iranian, Brazilian, Hungarian, Brit- ish, or Korean) and 45 multiple ethnicity groups (e.g. Ukrainian/German, Dutch/British, etc.). These were cate- gorized into 20 peoples groups (Fig. 1) based on geographic distribution. However, reasonable reclassication to fewer homogeneous subgroups could not be made. Even in terms of a continental comparison (African versus Asian versus European) the within-group heterogeneity seemed rather high, and population sizes highly varied (e.g. only 9 patients from the African continent which included South Africa, Egypt, Ethiopia, etc. compared to 121 people from Asia). In the previously published manuscript four groups were createdCanadian, British, European, and others. However, the other group had a large a variance culturally, geo- graphically, and socially. It also lacked a common factor besides being non-Canadian, which arguably British and European were as well. Grouping by language of origin seemed more likely to encompass similar challenges to people immigrating to an English-speaking part of Canada. Therefore, patients (73% of the patients) from countries where English was the ofcial rst language (English rst language countryEFLc) were compared to patients (27% of the patients) from a non-English rst language country (non-EFLc). Neither of these methods of classication were 238 J Immigrant Minority Health (2009) 11:237248 1 3 optimal, due to problems with heterogeneous groups and samples sizes. It is useful to note however, that whether participants were divided on this basis, or on the basis of country of origin as described above, the results were essentially the same. Participants Questionnaires were distributed to 3,095 patients, over 90% of all patients visiting the centre over the data col- lection period. Approximately 10% (319 patients) did not complete the questionnaires, due to reasons such asnot interested (43.5% of decliners), cannot read English (13.2%), feeling too sick (11%), too rushed (10.7%), too tired (6.6%), and other (15.4%). Of the 2,776 patients that did provide data, 13% (374 patients) did not provide details on their ethnicity. Therefore for the present study, the valid sample size was 2,402 cancer patients (77.6% of those approached and 87% of those who provided data). Statistical Analysis In order to study the role of patient ethnicity in psycho- social and disease outcomes, hierarchical logistic regression analysis was used to assess predictive relation- ships of relatively permanent demographic variables on the outcomes of distress. Patients gender, age, income, edu- cation, time since diagnosis, recurrence and cancer category were entered into the regression model as block 1 (Table 1). The language surrogate of ethnicity (EFLc/non- EFLc) however was entered into the regression model as block two. Results Psychosocial Distress The mean BSI GSI scores of the all the ethnic peoples groups were plotted (Fig. 1). The mean score of those who identied themselves as Canadian (host nation) were used as the point of comparison for the other groups. Visual observation suggests that patients who identied with a non English rst language country had consistently higher distress scores, patients originating from Japan being the only exception, compared to the Canadian mean, but due to wide variation in sample sizes no formal statistical com- parisons across these groupings were conducted. Results of the hierarchical logistic regression are pre- sented in Table 2. In the rst block of the regression, positive predictors of the Somatization subscale were being male (OR = 1.57, CI = 1.192.08), below the age of 70 years (age was divided by the 33.3rd and 66.6th per- centilespatients \54 years: OR = 1.43, CI = 1.081.9; patients aged 5469 years: OR = 1.38, CI = 1.071.79), having an annual income less that $40,000 (OR = 1.71, CI = 1.382.12), less than a year since the diagnosis (OR = 1.37, CI = 1.051.79), with recurrent/metastatic disease (OR = 2.06, CI = 1.672.54), having Haemato/ Lymphoproliferative cancers (OR = 1.67, CI = 1.72.37) and lung cancer (OR = 2.49, CI = 1.544.03). Patients 0.00 5.00 10.00 15.00 20.00 25.00 30.00 A s i a
( 9 ) A f r i c a n
( 9 ) A r a b
( 1 5 ) A u s t r a l i a n
( 3 ) C a n a d i a n
( 1 1 0 8 ) C h i n e s e
( 5 9 ) F i l i p i n o
( 2 0 ) G e r m a n
( 9 8 ) I n d i a n
( 2 5 ) J a p a n e s e
( 1 1 ) K o r e a n
( 2 ) N a t i v e
( 3 3 ) N e w
Z e l a n d
( 1 ) P a k i s t a n i
( 1 ) R e s t
o f
E u r o p e
( 2 6 0 ) R u s s i a n
( 1 3 ) S o u t h
A m e r i c a n
( 1 3 ) U K
( 5 1 6 ) U S A
( 1 1 ) V i e t n a m
( 3 ) Fig. 1 Overall BSI scores across categories J Immigrant Minority Health (2009) 11:237248 239 1 3 with prostate cancer however, had signicantly lower odds of reporting distress on the Somatization subscale (OR = 0.62, CI = 0.40.96). Introducing the ethnicity variable in the second block added to the explanatory power of the model (change in the log likelihood = 4.97, degrees of freedom = 1, signicance = 0.026); the non- EFLc patient predicted a higher Somatization score (OR = 1.3, CI = 1.031.62). Positive predictors of the Depression subscale (block one) were being below the age of 54 years and between 54 and 69 years (OR = 2.48, CI = 1.853.34; OR = 1.59, CI = 1.222.08, respectively), an annual income less than $40,000 (OR = 1.86, CI = 1.52.31), with recurrent/met- astatic disease (OR = 2.19, CI = 1.732.78), having lung cancer (OR = 2.55, CI = 1.584.11), and having a cancer of the head and neck (OR = 1.69, CI = 1.042.76). Introducing the ethnicity variable in the second block added to the explanatory power of the model (change in the log likelihood = 5.08, degrees of freedom = 1, signi- cance = 0.024); the non-EFLc patient predicted a higher Depression score (OR = 1.3, CI = 1.041.64). Positive predictors of the Anxiety subscale in the rst block were being male (OR = 1.46, CI = 1.11.94), below the age of 70 years (patients\54 years: OR = 2.29, CI = 1.683.1; patients aged 5469 years: OR = 1.59, CI = 1.212.1), less than a year since the diagnosis (OR = 1.34, CI = 1.011.76), with recurrent/ metastatic disease (OR = 1.7, CI = 1.342.17) and having lung cancer (OR = 1.99, CI = 1.243.19). Adding the ethnicity variable in the second block (being in the non-EFLc cate- gory) did not predict an increase or decrease in Anxiety score, and therefore did not signicantly add to the explanatory model (change in the log likelihood = 3.31, degrees of freedom = 1, signicance = 0.069). Positive predictors of Global Severity (block one) were being male (OR = 1.41, CI = 1.071.86), below the age of 70 years (patients\54 years: OR = 1.93, CI = 1.452.58; patients aged 5469 years: OR = 1.46, CI = 1.121.89), an annual income less than $40,000 (OR = 1.62, CI = 1.312.01), within a year of diagnosis (OR = 1.5, CI = 1.151.96), with recurrent/metastatic disease (OR = 2.41, CI = 1.93.05) and having lung cancer (OR = 1.93, CI = 1.233.1). Patients with prostate cancer however, had sig- nicantly lower odds of reporting distress on the Global Severity (OR = 0.54, CI = 0.350.84). Introducing the ethnicity variable in the second block added to the explan- atory power of the model (change in the log likelihood = 5.02, degrees of freedom = 1, signicance = 0.025); the Table 1 Variables used in the hierarchical logistic regression with respective referent categories Variable Subgroup n % Category Gender Male 1,141 47.5 Female 1,257 52.3 Referent Age \54 770 32.1 5469 807 33.6 [69 806 33.6 Referent Income \$40,000 990 41.2 [40,000 1,173 48.8 Referent Education No college education 1,097 45.7 With college education 1,157 48.2 Referent Time since diagnosis \1 year 902 37.6 13 years 639 26.6 [3 years 801 33.3 Referent Recurrence Yes 801 33.3 No 1,601 66.7 Referent Cancer category Haemato/lymphoproliferative 331 13.8 Gynecological 167 7.0 Digestive/gastrointestinal 273 11.4 Other 289 12.0 Lung 144 6.0 Head and neck 130 5.4 Prostate 420 17.5 Breast 569 23.7 Referent Patient from English First Language country (EFLc)? No (non-EFLc) 653 27.2 Yes (EFLc) 1,749 72.8 Referent 240 J Immigrant Minority Health (2009) 11:237248 1 3 Table 2 Hierarchical logistic regression analysis of factors predicting BSI-18 scale and subscale score identied distress Variable Subgroup b SE Wald (df = 1) P Exp (b) 95% CI for Exp (b) Somatisation Block 1 Gender Male 0.454 0.142 10.252 0.001** 1.574 (1.192.08) Age \54 years 0.36 0.146 6.085 0.014* 1.433 (1.0771.907) 5469 years 0.322 0.132 6.019 0.014* 1.381 (1.0671.786) Income \$40,000 0.536 0.109 24.209 0.000** 1.709 (1.382.115) Education Without college education -0.023 0.17 0.144 0.833 0.978 (0.7931.205) Time from diagnosis Less than 1 year 0.315 0.136 5.397 0.02* 1.371 (1.051.789) 13 years 0.16 0.134 1.427 0.232 1.174 (0.9021.527) Recurrence Yes 0.831 0.12 48.355 0.000** 2.296 (1.8172.903) Cancer site Haemato/lymphoproliferative 0.51 0.18 7.987 0.005** 1.665 (1.1692.371) Gynecological 0.026 0.21 0.016 0.9 1.027 (0.681.548) Digestive/gastrointestinal 0.055 0.197 0.077 0.781 1.056 (0.7181.554) Other -0.12 0.2 0.359 0.549 0.887 (0.61.312) Lung 0.914 0.245 13.944 0.000** 2.493 (1.5444.028) Head and neck 0.139 0.249 0.313 0.576 1.149 (0.7061.872) Prostate -0.474 0.222 4.548 0.033* 0.623 (0.4030.962) Block 2 Gender Male 0.449 0.142 10.001 0.002** 1.567 (1.182.07) Age \54 years 0.353 0.146 5.834 0.016* 1.423 (1.0691.895) 5469 years 0.321 0.123 5.959 0.015* 1.379 (1.0651.785) Income \$40,000 0.516 0.109 22.32 0.000** 1.676 (1.3532.076) Education Without college education -0.041 0.107 0.144 0.705 0.96 (0.7781.185) Time from diagnosis Less than 1 year 0.3 0.136 4.868 0.027* 1.351 (1.0341.764) 13 years 0.152 0.134 1.283 0.257 1.165 (0.8951.516) Recurrence Yes 0.838 0.12 48.898 0.000** 2.313 (1.8282.924) Cancer site Haemato/lymphoproliferative 0.533 0.181 8.677 0.003** 1.704 (1.1952.43) Gynecological 0.025 0.21 0.015 0.904 1.026 (0.681.548) Digestive/gastrointestinal 0.063 0.197 0.103 0.748 1.065 (0.7241.56) Other -0.109 0.2 0.296 0.587 0.897 (0.6061.328) Lung 0.94 0.245 14.674 0.000** 2.56 (1.5834.142) Head and neck 0.143 0.249 0.331 0.565 1.154 (0.7091.879) Prostate -0.466 0.222 4.384 0.036* 0.628 (0.4060.971) EFLc Patient Non-EFLc patient 0.258 0.116 4.987 0.026* 1.294 (1.0321.624) Depression Block 1 Gender Male -0.239 0.143 2.79 0.095 0.787 (0.5941.042) Age \54 years 0.91 0.151 36.333 0.000** 2.484 (1.8483.339) 5469 years 0.465 0.137 11.509 0.001** 1.592 (1.2172.082) Income \$40,000 0.621 0.111 31.403 0.000** 1.826 (1.4982.313) Education Without college education 0.077 0.109 0.504 0.478 1.08 (0.8731.337) Time from diagnosis Less than 1 year 0.206 0.138 2.219 0.136 0.1228 (0.9371.61) 13 years 0.185 0.136 1.841 0.175 1.203 (0.9211.573) Recurrence Yes 0.785 0.121 42.131 0.000** 2.193 (1.732.781) Cancer site Haemato/lymphoproliferative 0.158 0.182 0.747 0.387 1.171 (0.8191.674) Gynecological 0.109 0.206 0.278 0.598 1.115 (0.7441.67) Digestive/gastrointestinal 0.177 0.198 0.802 0.371 1.194 (0.811.761) Other -0.073 0.2 0.134 0.714 0.929 (0.6281.375) J Immigrant Minority Health (2009) 11:237248 241 1 3 Table 2 continued Variable Subgroup b SE Wald (df = 1) P Exp (b) 95% CI for Exp (b) Lung 0.937 0.243 14.81 0.000** 2.552 (1.5844.114) Head and neck 0.527 0.249 4.472 0.034* 1.694 (1.0392.761) Prostate -0.023 0.228 0.01 0.919 0.977 (0.6251.528) Block 2 Gender Male -0.246 0.144 2.927 0.087 0.782 (0.591.036) Age \54 years 0.905 0.151 35.823 0.000** 2.472 (1.8383.324) 5469 years 0.465 0.137 11.469 0.001** 1.591 (1.2162.082) Income \$40,000 0.602 0.111 29.248 0.000** 1.826 (1.4682.271) Education Without college education 0.058 0.109 0.286 0.593 1.06 (0.8561.313) Time from diagnosis Less than 1 year 0.188 0.138 1.845 0.174 1.207 (0.921.583) 13 years 0.178 0.137 1.686 0.194 1.194 (0.9141.561) Recurrence Yes 0.79 0.121 42.479 0.000** 2.204 (1.7382.796) Cancer site Haemato/lymphoproliferative 0.18 0.183 0.972 0.324 1.198 (0.8371.714) Gynecological 0.108 0.207 0.271 0.603 1.114 (0.7431.67) Digestive/gastrointestinal 0.185 0.199 0.865 0.352 1.203 (0.8151.776) Other -0.06 0.2 0.091 0.763 0.941 (0.6361.393) Lung 0.964 0.244 15.613 0.000** 2.623 (1.6264.231) Head and neck 0.531 0.25 4.524 0.033* 1.701 (1.0432.775) Prostate -0.013 0.228 0.003 0.953 0.987 (0.6311.544) EFLc Patient Non-EFLc patient 0.264 0.117 5.112 0.024* 1.302 (1.0361.637) Anxiety Block 1 Gender Male 0.377 0.146 6.681 0.01** 1.458 (1.0951.941) Age \54 years 0.827 0.142 28.558 0.000** 2.287 (1.683.098) 5469 years 0.466 0.142 10.778 0.001** 1.593 (1.2072.104) Income \$40,000 0.209 0.113 3.419 0.064 1.232 (0.9881.538) Education Without college education 0.036 0.111 0.104 0.747 1.036 (0.8341.288) Time from diagnosis Less than 1 year 0.289 0.141 4.222 0.04* 1.335 (1.0131.758) 13 years 0.159 0.14 1.296 0.255 1.172 (0.8921.541) Recurrence Yes 0.533 0.123 18.666 0.000** 1.703 (1.3382.169) Cancer site Haemato/lymphoproliferative -0.042 0.189 0.049 0.825 0.959 (0.6651.39) Gynecological -0.124 0.219 0.32 0.571 0.883 (0.5751.357) Digestive/gastrointestinal -0.114 0.207 0.303 0.582 0.892 (0.5951.339) Other -0.128 0.204 0.393 0.531 0.88 (0.591.312) Lung 0.584 0.243 5.777 0.016* 1.792 (1.1142.885) Head and neck 0.291 0.251 1.347 0.246 1.338 (0.8182.188) Prostate -0.457 0.234 3.806 0.051 0.633 (0.41.002) Block 2 Gender Male 0.373 0.146 6.511 0.011* 1.452 (1.091.933) Age \54 years 0.823 0.155 28.176 0.000** 2.277 (1.683.085) 5469 years 0.465 0.142 10.74 0.001** 1.593 (1.2062.104) Income \$40,000 0.192 0.114 2.847 0.092 1.211 (0.9691.513) Education Without college education 0.021 0.111 0.036 0.85 1.021 (0.8211.271) Time from Less than 1 year 0.277 0.141 3.865 0.049* 1.319 (1.0011.738) diagnosis 13 years 0.154 0.14 1.223 0.269 1.167 (0.8881.535) Recurrence Yes 0.536 0.123 18.865 0.000** 1.709 (1.3422.177) Cancer site Haemato/lymphoproliferative -0.023 0.19 0.015 0.904 0.977 (0.6741.418) Gynecological -0.127 0.22 0.336 0.562 0.88 (0.5731.354) 242 J Immigrant Minority Health (2009) 11:237248 1 3 non-EFLc patient predicted a higher Global Severity score (OR = 1.3, CI = 1.031.63). The positive and negative predictors of distress by the BSI scale and subscale scores are summarized in Fig. 2. Patients below 70 years of age, those with lung cancer and those with recurrent disease predicted higher Global Severity, Somatization, Depression and Anxiety scores. Male patients and those within a year of being diagnosed predicted higher Global Severity, Somatization and Anxi- ety scores. Non-EFLc patients and those with low incomes predicted higher Global Severity, Somatization and Depression scores. Those with cancer of the prostate Table 2 continued Variable Subgroup b SE Wald (df = 1) P Exp (b) 95% CI for Exp (b) Digestive/gastrointestinal -0.709 0.207 0.276 0.599 0.897 (0.5981.346) Other -0.118 0.204 0.335 0.563 0.889 (0.5951.326) Lung 0.604 0.243 6.167 0.013* 1.89 (1.1362.949) Head and neck 0.295 0.251 1.382 0.24 1.343 (0.8212.195) Prostate -0.119 0.234 3.674 0.055 0.638 (0.4031.01) EFLc Patient Non-EFLc patient 0.218 0.119 3.344 0.067 1.243 (0.9841.57) GSI Block 1 Gender Male 0.34 0.142 5.907 0.015* 1.411 (1.0691.863) Age \54 years 0.658 0.147 20.058 0.000** 1.931 (1.4482.575) 5469 years 0.376 0.133 7.978 0.005** 1.457 (1.1221.891) Income \$40,000 0.482 0.109 19.486 0.000** 1.619 (1.3072.005) Education Without college education 0.009 0.107 0.007 0.932 1.009 (0.8181.244) Time from diagnosis Less than 1 year 0.406 0.136 8.883 0.003** 1.501 (1.1491.96) 13 years 0.216 0.135 2.56 0.11 1.241 (0.9531.617) Recurrence Yes 0.878 0.12 53.471 0.000** 2.406 (1.9023.045) Cancer site Haemato/lymphoproliferative 0.218 0.18 1.469 0.225 1.244 (0.8741.77) Gynecological -0.012 0.206 0.041 0.84 0.959 (0.641.437) Digestive/gastrointestinal -0.028 0.196 0.02 0.887 0.973 (0.6631.428) Other -0.312 0.199 2.456 0.117 0.732 (0.4961.081) Lung 0.657 0.241 7.437 0.006** 1.93 (1.2033.096) Head and neck 0.111 0.248 0.202 0.653 1.118 (0.6881.817) Prostate -0.613 0.224 7.495 0.006** 0.542 (0.3490.84) Block 2 Gender Male 0.34 0.142 5.745 0.017* 1.405 (1.0641.856) Age \54 years 0.652 0.147 19.608 0.000** 1.919 (1.4382.56) 5469 years 0.375 0.133 7.914 0.005** 1.455 (1.121.89) Income \$40,000 0.462 0.11 17.787 0.000** 1.587 (1.2811.968) Education Without college education -0.009 0.107 0.007 0.934 0.991 (0.8031.223) Time from diagnosis Less than 1 year 0.39 0.137 8.166 0.004** 1.478 (1.131.931) 13 years 0.208 0.135 2.372 0.124 1.232 (0.9451.606) Recurrence Yes 0.884 0.12 53.938 0.000** 2.42 (1.9123.064) Cancer site Haemato/lymphoproliferative 0.24 0.181 1.771 0.183 1.272 (0.8931.811) Gynecological -0.043 0.207 0.043 0.836 0.958 (0.6391.437) Digestive/gastrointestinal -0.021 0.196 0.011 0.916 0.98 (0.6671.439) Other -0.301 0.199 2.284 0.131 0.74 (0.51.094) Lung 0.682 0.242 7.958 0.005** 1.978 (1.2323.177) Head and neck 0.114 0.248 0.211 0.646 1.121 (0.691.821) Prostate -0.606 0.224 7.293 0.007** 0.546 (0.3520.847) EFLc patient Non-EFLc patient 0.259 0.116 5.04 0.025* 1.296 (1.0331.625) * P\0.05; ** P\0.01 J Immigrant Minority Health (2009) 11:237248 243 1 3 predicted lower Global Severity and Somatization scores. Patients with hematoproliferative or lymphoproliferative cancers predicted higher Global Severity scores, while those with cancers of the head and neck predicted higher Depression scores. Discussion The present report is an in-depth analysis of an earlier study on a large representative cancer population in an urban tertiary Canadian cancer centre on the basis of eth- nicity (using rst language as a surrogate marker) [1]. More than 25% of those surveyed were patients who identied themselves to be from non-English rst language countries (non-EFLc). A caveat is that the classication may not necessarily reect the patients English communication skills, which may be an important factor in distress felt in the health care system in and of itself. Patient ethnicity, amongst a number of other variables, had an important role in determining distress levels. Patients who were from ethnicities other than Canadian or other primarily English speaking ethnicities including British, American, Austra- lian, etc., were more likelya 1.3 times increase in risk to report higher levels of distress. Graphical representation of distress scores (Fig. 1) reveals the highest levels in patients from China, India, Korea, Vietnam and South America, but many of these groups were too small for formal statistical comparisons. There is research indicating that people from some ethnicities are less likely to partic- ipate in cancer screening behavior such as mammography [20, 23, 25, 26], but they do not investigate whether dis- tress played a role in the screening behavior. A few implications could be drawn from the study. Firstly, in the United States the relationship between nancial status and disparity in cancer outcomes is repeatedly underlined [42, 43]. If this was one of the pri- mary reasons of disparity, then in countries like Canada with a publicly funded health system [44] or the Canadian province of Alberta where this is taken a step further with the elimination of health premiums as of January 2009 [45], disparity should not exist or at least be less obvious. Therefore the notion that poverty as an ideal indicator of disparity requires revisiting. Secondly, Simpson et al. in 2001 [46] identied that use of psychosocial oncology services provided cost offsets of up to 22% to the medical system. Therefore in the present study given that ethnic minority populations are at greater risk for distress compared to the majority host population, the converse of the Simpson et al. study could be hypoth- esizedthat untreated distress in these populations may inuence a greater uptake of medical services (presentation at emergency, or repeat hospital visits, etc). Finally, the role of interventions. Several studies have indicated the communication pitfalls between the practi- tioner and general population [4750] as well as in minority populations [51, 52]. It may inappropriate to say that translating hospital literature to 52 languages or having a multicultural staff (which is benecial) or the provision of professional translators, be a solution in itself. Improvement of treatment outcomes is the result of improved communi- cation on the part of the health care provider as well as the patient. Some examples to this are an agreed-upon man- agement plan [49], rudimentary training to increase participation in medical encounters [53], and provision of printed material to prompt patients to write down questions Fig. 2 Predictors of BSI scale and subscale based distress classication 244 J Immigrant Minority Health (2009) 11:237248 1 3 prior to a visit [54] or patient education videotapes to role- model active behaviors [55]. It could also be as simple as being encouraged to bring a companion to important con- sultations, such as the discussion of potential cancer diagnosis and treatment [52]. Research Issues Around Measuring Ethnicity In terms of classication of ethnicity, an overarching concern exists regarding how well those who self-identify as Canadian t the non-Hispanic White description of what is known as the host population in todays multicul- tural context. They may be predominantly Caucasian but there are an increasing number of people who are visibly of a single or mixed ethnic descent, yet identify themselves as Canadian or part of the host population. Other ques- tions also intertwined in this conundrum are issues of self- identication with the adopted or ancestral country, how this changes over generations after immigration, and its impact on healthcare behavior, access to healthcare, and health related decision-making. For example, the 97 Germans identied in this survey may be new immigrants who still speak German regularly, or second or third-generation immigrants who are fully integrated in the dominant culture and speak awless English, yet retain pride in their German heritage and hence self-identify in that manner. They may also be Caucasian or non-white, but there is no way of knowing from the self-identication as German. The same prob- lem exists in interpreting self-identication in many of the other categories such as American or Canadian. The other matter of concern stems from research noting how gradations of English prociency might affect health status and healthcare access [56]. Ponce et al. [56] postu- lated that if being English procient could enable the individual to gain better healthcare access and better health status, then the outcomes of the English-Procient popu- lation (those who are uent in English but speak a different language as their mother tongue) would be comparable to those of the English-Only population (presumably the host population). In their study testing this hypothesis, English- Procient individuals were not found to differ from Eng- lish-Only individuals on healthcare access or health status, in contrast to the signicantly worse access to care and health status of Limited-English-Procient individuals (those not fully uent in English). Interestingly however, both Limited-English-Procient and English-Procient individuals had a statistically higher risk of reporting poorer emotional health when compared to the English- Only individuals [56]. This may be mirrored in the present study, as we can assume that most of the non-English rst language (non-EFLc) patients, who had higher overall emotional distress, may have been similar to the English- Procient group in the Ponce et al. study [56]. To better conceptualize the discussed issues in dening patient ethnicity, we suggest the following hypothesis. The two most tangible and easily assessable potential markers of patients ethnicity that may inuence access and perhaps utilization of the healthcare system are (1) prociency in the host language, and (2) physical resemblance to the host population. Figure 3 is a representation of this hypothesis and there are two important points. Resembling a non-host ethnicity/race (quadrant 2) does not preclude individuals from considering themselves to be part of the host popu- lation (e.g., a person with an Asian background dening/ categorizing themselves as Canadian or Australian despite the obvious non-Canadian or non-Australian physical fea- tures). Also, some individuals in quadrant 3, whose physical features are compatible with the host population, may consider themselves of a different race/ethnicity (e.g., a cancer patient originally from Finland who speaks uent English may consider themselves Finnish rst and Amer- ican second). Potential patient-related outcomes for the four quadrants may be the following: Quadrant 1: English-speaking and seemingly the visible majority Patients in this quadrant may consider themselves as representative of the host population and hence would have an understanding of the access to and navigation of care. Given that this quadrant may include up to 80% of the population, most health status and outcomes research is based on this group. Quadrant 2: English-speaking and visible minority Patients in this quadrant too may consider themselves as English Only: EO; English Proficient: EP; Limited English Proficiency: LEP Fig. 3 The population of a multicultural society J Immigrant Minority Health (2009) 11:237248 245 1 3 members of the host population for several reasons number of generations that have lived in the country, or having been born and raised there. They would also have the required skills to access and navigate the care system. However, their physical features may cause the health system to view them as a visible minority. It may be observed that these patients are often asked inappro- priate questions (e.g., How long have you been in Canada/Australia? Do you require a translator when you are with the doctor?) which may create emotional distress and feelings of marginalization. Quadrant 3: Non-English speaking and appears visible majority Generally rst generation immigrants who are still learning to navigate the new health care system, but would have lesser concerns of marginalization or exclusion in the host system based on physical appear- ance. Unless there is a strong accent or a direct request of help, the health system may assume that this group of people know or understand the navigation process. Language issues, though a concern here, may not be to the extent as it would be for those in Quadrant 4. These individuals may also experience less stereotyping from the host health system in comparison to those in Quadrant 2, and 4. Quadrant 4: Non-English speaking and visible minority Patients in this quadrant may generally be rst gener- ation immigrants from countries that do not have English as a rst language. Given the immigration process in most Western countries, a subset of them would be English-Procient, yet may still experience a degree of marginalization or exclusion. Navigating a new health system that is different from they may be accustomed to may cause them signicant psychological concern. This classication matrix may be useful in research investigating the impact of ethnicity, language and race on cancer patient outcomes in a number of ways. Potential research questions may tackle the following issues: Do the four quadrants view the host cancer health system differ- ently and does the meaning of cancer, the impact of diagnosis, and the determinants of decision making (treatment or otherwise) differ between these individuals? Do these differences translate into or affect psychosocial or bio-medical outcomes? Conclusions Ethnicity as a prognostic variable in cancer care seems to be a promising area for further research. With its multi- cultural patient population, and the impetus towards uptake of emotional distress as the 6th vital sign, this line of research is relevant in todays multicultural societies, and requires a systematic interdisciplinary study. The goals of such a program of research would be to understand the experience of immigrants and those from diverse ethnic backgrounds, and ultimately intervene to provide a health care system that is responsive to the needs of all individ- uals, regardless of their ethnic background. Acknowledgements The study was funded from an independent grant awarded to Drs. Carlson and Bultz from the Zero in on Cancer Fundraiser, 2002, and the Calgary Satellite Research Centre of the Sociobehavioral Cancer Research Network, funded by the Canadian Cancer Society. Dr. Bejoy Thomas is a postdoctoral fellow (2007 2009) funded by the Alberta Heritage Foundation for Medical Research, Alberta, Canada. Dr. Linda Carlson holds the Enbridge Endowed Research Chair in Psychosocial Oncology (20072012), co-funded by the Canadian Cancer Society Alberta/NWT Division and the Alberta Cancer Foundation. Part of this manuscript was presented at the 23rd Annual Conference of the Canadian Association of Psychosocial Oncology (CAPO), Halifax, Canada, 79 May 2008, the 4th Annual Conference of the American Psychosocial Society (APOS), Austin, Texas, 14 March 2007, and at the 8th World Congress on Psycho-Oncology held at Venice, Italy, from 16th to 21st October 2006. References 1. Carlson LE, Angen M, Cullum J, Goodey E, Koopmans J, La- mont L, et al. High levels of untreated distress and fatigue in cancer patients. Br J Cancer. 2004;90(12):2297304. 2. Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10(1):1928. 3. Thomas BC, Thomas I, Nandamohan V, Nair MK, Pandey M. Screening for distress can predict loss of follow-up and treatment in cancer patients: results of development and validity of the distress inventory for cancer version 2. Psychooncology. (2008);in press. 4. Fielding R, Lam WWT, Ho E. Factors predicting psychological morbidity in Chinese women following breast cancer surgery. Psychooncology. 2004;13:S53. 5. Shimizu K, Akechi T, Okamura M, Akizuki N, Uchitomi Y. Feasibility and usefulness of the distress and impact thermometer as a brief screening tool to detect psychological distress in clin- ical oncology practice. Psychooncology. 2004;13:S689. 6. Montazeri A, Sajadian A, Fateh A, Haji-Mahmoodi M, Ebrahimi M. Factors predicting psychological distress in cancer patients. Psychooncology. 2004;13:S62. 7. Isikhan V, Guner P, Komurcu S, Ozet A, Arpaci F, Ozturk B. The relationship between disease features and quality of life in patients with cancer-I. Cancer Nurs. 2001;24(6):4905. doi: 10.1097/00002820-200112000-00012. 8. Sadeh-Tassa D, Yagil Y, Stadker J. A comparision between rst occurence and recurrence of breast cancer: anxiety, depression, PTSD. Psychooncology. 2004;13(suppl):S66. 9. Gil F, Travado L, Tomamichel M, Grassi L. Visual analog scales (VAS) and hospital anxiety depression (HAD) scale as tools for evaluating distress in cancer patients: a multi-centre southern European study. Psychooncology. 2003;12(4):S257. 10. Dolbeault S, Mignot V, Gauvain-Piquard A, Mandereau L, Asselain B, Medioni J. Evaluation of psychological distress and quality of life in French cancer patients: validation of the French 246 J Immigrant Minority Health (2009) 11:237248 1 3 version of the Memorial distress thermometer. Psychooncology. 2003;12(4):S225. 11. Mehnert A. Prevalence of post-traumatic stress disorder, anxiety and depression in a representative sample of breast cancer patients. Psychooncology. 2004;13:S62. 12. Santos FRM. Symptoms of post-traumatic stress disorder in patients with malignant hematologic disease. Psychooncology. 2004;13(suppl):S67. 13. Bultz BD, Carlson LE. Emotional distress: the sixth vital sign in cancer care. J Clin Oncol. 2005;23(26):64401. 14. Rebalance Focus Action Group. A position paper: screening key indicators in cancer patients-pain as a 5th vital sign and emotional distress as a 6th vital sign. Canadian Strategy for Cancer Control Bulletin. Can Strategy Cancer Control Bull. 2005;7(Suppl):4. 15. Institute of Medicine (IOM). Cancer care for the whole patient: meeting psychosocial health needs. In: Adler NE, Page AEK, editors. Washington, DC: The National Academies Press; 2008. 16. Accreditation Canada. Qmentum Program 2009 standards: cancer care and oncology services, Ver 2. 2008. 17. Ashbury FD, Findlay H, Reynolds B, McKerracher K. A Cana- dian survey of cancer patients experiences: are their needs being met? J Pain Symptom Manage. 1998;16(5):298306. 18. Carlson LE, Bultz BD. Efcacy and medical cost offset of psy- chosocial interventions in cancer care: making the case for economic analyses. Psychooncology. 2004;13(12):83749. 19. Powe BD, Finnie R. Cancer fatalism: the state of the science. Cancer Nurs. 2003;26(6):45465. doi:10.1097/00002820-2003 12000-00005. quiz 4667. 20. Meyerowitz BE, Richardson J, Hudson S, Leedham B. Ethnicity and cancer outcomes: behavioral and psychosocial consider- ations. Psychol Bull. 1998;123(1):4770. doi:10.1037/0033-2909. 123.1.47. 21. Miller BA, Kolonel LN, Bernstein L, Young JL Jr, Swanson GM, West D, et al. Racial/ethnic patterns of Cancer in the United States 19881992. 1996;NIH Pub. No. 96-4104. 22. Hoffman-Goetz L, Friedman DB. Disparities in the coverage of cancer information in ethnic minority and mainstream mass print media. Ethn Dis. 2005;15(2):33240. 23. Calle EE, Flanders WD, Thun MJ, Martin LM. Demographic predictors of mammography and Pap smear screening in US women. Am J Public Health. 1993;83(1):5360. 24. Duelberg SI. Preventive health behavior among black and white women in urban and rural areas. Soc Sci Med. 1992;34(2):1918. doi:10.1016/0277-9536(92)90096-9. 25. Hayward RA, Shapiro MF, Freeman HE, Corey CR. Who gets screened for cervical and breast cancer? Results from a new national survey. Arch Intern Med. 1988;148(5):117781. doi: 10.1001/archinte.148.5.1177. 26. Mancuso C, Glendon G, Anson-Cartwright L, Shi EJ, Andrulis I, Knight J. Ethnicity, but not cancer family history, is related to response to a population-based mailed questionnaire. Ann Epi- demiol. 2004;14(1):3643. doi:10.1016/S1047-2797(03)00073-5. 27. LeMarchand L, Kolonel LN, Nomura AM. Relationship of eth- nicity and other prognostic factors to breast cancer survival patterns in Hawaii. J Natl Cancer Inst. 1984;73(6):125965. 28. Young JL Jr, Ries LG, Pollack ES. Cancer patient survival among ethnic groups in the United States. J Natl Cancer Inst. 1984;73(2):34152. 29. Mathews HF, Lannin DR, Mitchell JP. Coming to terms with advanced breast cancer: black womens narratives from eastern North Carolina. Soc Sci Med. 1994;38(6):789800. doi:10.1016/ 0277-9536(94)90151-1. 30. OHare PA, Malone D, Lusk E, McCorkle R. Unmet needs of black patients with cancer posthospitalization: a descriptive study. Oncol Nurs Forum. 1993;20(4):65964. 31. Formenti SC, Meyerowitz BE, Ell K, Muderspach L, Groshen S, Leedham B, et al. Inadequate adherence to radiotherapy in Latina immigrants with carcinoma of the cervix. Potential impact on disease free survival. Cancer. 1995;75(5):113540. doi :10.1002/ 1097-0142(19950301)75:5\1135::AID-CNCR2820750513[3.0.CO; 2-M. 32. Buckle JM, Horn SD, Oates VM, Abbey H. Severity of illness and resource use differences among white and black hospitalized elderly. Arch Intern Med. 1992;152(8):1596603. doi:10.1001/ archinte.152.8.1596. 33. Thomas BC, Pandey M, Ramdas K, Sebastian P, Nair MK. FACT-G: reliability and validity of the Malayalam translation. Qual Life Res. 2004;13(1):2639. 34. Pandey M, Thomas BC, Ramdas K, Eremenco S, Nair MK. Quality of life in breast cancer patients: validation of a FACT-B Malayalam version. Qual Life Res. 2002;11(2):8790. 35. Alagaratnam TT, Kung NY. Psychosocial effects of mastectomy: is it due to mastectomy or to the diagnosis of malignancy? Br J Psychiatry. 1986;149:2969. 36. Bando M. Experiences of breast reconstruction following mas- tectomy in cases of cancer and evaluation of psychological aspects of the patients. Cancer Chemother. 1990;17(4 Pt 2):80410. 37. Guidry JJ, Torrence W, Herbelin S. Closing the divide: diverse populations and cancer survivorship. Cancer. 2005;104(11 Sup- pl):257783. doi:10.1002/cncr.21251. 38. Derogatis LR. Brief symptom inventory 18: administration, scoring and procedures manual. Minneapolis: NCS Pearson Inc.; 2001. 39. Derogatis LR. SCL90-R: administration, scoring and procedures manual-II. 2nd ed. Baltimore, MD: Clinical Psychometric Research; 1983. 40. Derogatis LR. Brief symptom inventory: administration, scoring and procedures manual. Minneapolis: National Computer Sys- tems, Inc.; 1993. 41. Zabora J, BrintzenhofeSzoc K, Jacobsen P, Curbow B, Piantadosi S, Hooker C, et al. A new psychosocial screening instrument for use with cancer patients. Psychosomatics. 2001;42(3):2416. 42. Smedley BD, Stith AY, Nelson AR. Unequal treatment: con- fronting racial and ethnic disparities in health care. Washington: The National Academies Press; 2002. 43. American Cancer Society. Cancer facts & gures. 2007. 44. Health Canada. Canada Health ActAnnual Report 20052006. 2007. 45. Government of Alberta. Budget 2008. Available at: http://www. alberta.ca/budget2008/, 14 July 2008. 46. Simpson JS, Carlson LE, Trew M. Impact of a group psychoso- cial intervention on health care utilization by breast cancer patients. Cancer Pract. 2001;9(1):1926. doi:10.1046/j.1523- 5394.2001.91005.x. 47. Davenport S, Goldberg D, Millar T. How psychiatric disorders are missed during medical consultations. Lancet. 1987;2(8556): 43941. doi:10.1016/S0140-6736(87)90970-6. 48. Frankel R, Beckman H. Evaluating the patients primary prob- lem(s). In: Stewart M, Roter D, editors. Communicating with medical patients Newbury Park. California: Sage Publications; 1989. p. 8698. 49. Stewart MA. Effective physician-patient communication and health outcomes: a review. Can Med Assoc J. 1995;152(9):142333. 50. Street RL Jr, Gordon HS, Ward MM, Krupat E, Kravitz RL. Patient participation in medical consultations: why some patients are more involved than others. Med Care. 2005;43(10):9609. doi:10.1097/01.mlr.0000178172.40344.70. 51. Johnson RL, Roter D, Powe NR, Cooper LA. Patient race/eth- nicity and quality of patient-physician communication during medical visits. Am J Public Health. 2004;94(12):208490. J Immigrant Minority Health (2009) 11:237248 247 1 3 52. Gordon HS, Street RL Jr, Sharf BF, Souchek J. Racial differences in doctors information-giving and patients participation. Can- cer. 2006;107(6):131320. doi:10.1002/cncr.22122. 53. Greeneld S, Kaplan S, Ware JE Jr. Expanding patient involve- ment in care. Effects on patient outcomes. Ann Intern Med. 1985;102(4):5208. 54. Cegala DJ, McClure L, Marinelli TM, Post DM. The effects of communication skills training on patients participation during medical interviews. Patient Educ Couns. 2000;41(2):20922. doi: 10.1016/S0738-3991(00)00093-8. 55. Anderson LA, DeVellis BM, DeVellis RF. Effects of modeling on patient communication, satisfaction, and knowledge. Med Care. 1987;25(11):104456. doi:10.1097/00005650-198711000- 00003. 56. Ponce NA, Hays RD, Cunningham WE. Linguistic disparities in health care access and health status among older adults. J Gen Intern Med. 2006;21(7):78691. doi:10.1111/j.1525-1497.2006. 00491.x. 248 J Immigrant Minority Health (2009) 11:237248 1 3 Reproducedwith permission of thecopyright owner. Further reproductionprohibited without permission.