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Breast Cancer Survivorship in a Multiethnic Sample Challenges in Recruitment and Measurement Kimlin T. Ashing-Giwa, Ph.D. 1,2 Geraldine V. Padilla, Ph.D. 3 Judith S. Tejero, M.P.H. 1 Jinsook Kim, D.D.S., M.P.H. 1 1 Department of Psychiatry and Biobehavioral Sci- ences, University of California–Los Angeles, Los Angeles, California. 2 California School of Professional Psychology at Alliant International University, Los Angeles, Cali- fornia. 3 Department of Nursing, University of California– San Francisco, San Francisco, California. Supported by a grant from the Department of Defense (17-99-1-9106). Address for reprints: Kimlin Ashing-Giwa, Ph.D., Department of Psychiatry and Biobehavioral Sci- ences, University of California–Los Angeles, 760 Westwood Plaza, Box 62, Los Angeles, CA 90095; Fax: (310) 794-6297; E-mail: [email protected] Received February 23, 2004; revision received April 8, 2004; accepted April 20, 2004. BACKGROUND. The inclusion of ethnic minorities in cancer-related studies contin- ues to be an important concern for researchers. In this article, the authors present 1) a brief discussion of recruitment and measurement challenges in conducting multiethnic survivorship research, and 2) recruitment outcomes and sample char- acteristics for a health-related quality-of-life study with a multiethnic sample of breast cancer survivors (BCS). METHODS. A case– control, cross-sectional design with mixed sampling methods was used. The Contextual Model for Recruitment and Enrollment of Diverse Sam- ples was used to guide the protocol. BCS were recruited from the California Cancer Surveillance Program, from hospital registries, and from community agencies. Participation rates, demographic factors, and medical factors were compared. The reliability of standard measures by ethnicity was assessed. RESULTS. Seven hundred three women participated, including 135 African-Amer- ican women (19%), 206 Asian-American women (29%), 183 Latina-American women (26%), and 179 European-American women (26%). Participation was in- fluenced by ethnicity, age, and site of recruitment. Overall, African Americans were least likely to participate, and European Americans most likely to participate. African Americans and Asian Americans were more likely to refuse, European Americans and Latina Americans were more likely to agree to participate, and European Americans and Asian Americans were most likely to complete the survey after consenting. Measures possessed moderate to excellent reliability (0.64 – 0.91). CONCLUSIONS. Despite important recruitment and measurement challenges, this study obtained acceptable participation rates and good internal consistency of the measures. The results demonstrate the utility of a culturally responsive approach to health disparities research. Cancer 2004;101:450 – 65. © 2004 American Cancer Society. KEYWORDS: breast cancer, multiethnic, ethnic minority, recruitment. D espite the 1993 National Institutes of Health Revitalization Act that required inclusion of women and ethnic minorities, research participation of these underrepresented groups remains a concern. 1,2 Significant gaps exist in the cancer literature, particularly in terms of health-related quality of life (HRQOL) among diverse ethnic groups. 1,3 Low ethnic minority inclusion in cancer-related research limits the generalizability of findings and ascertainment of important contex- tual determinants (e.g., cultural, socioecological). Increasing partici- pation in health research is critical, because these communities often face disproportionate disease-related burden. 4–6 Among women of all racial and ethnic groups, breast cancer (BCA) is the most common form of cancer and is the second leading cause of cancer death. 7 However, the vast majority of investigations, including survivorship studies, employ nonrepresentative, conve- 450 © 2004 American Cancer Society DOI 10.1002/cncr.20370 Published online 18 June 2004 in Wiley InterScience (www.interscience.wiley.com).

Breast cancer survivorship in a multiethnic sample : Challenges in recruitment and measurement

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Breast Cancer Survivorship in a Multiethnic SampleChallenges in Recruitment and Measurement

Kimlin T. Ashing-Giwa, Ph.D.1,2

Geraldine V. Padilla, Ph.D.3

Judith S. Tejero, M.P.H.1

Jinsook Kim, D.D.S., M.P.H.1

1 Department of Psychiatry and Biobehavioral Sci-ences, University of California–Los Angeles, LosAngeles, California.

2 California School of Professional Psychology atAlliant International University, Los Angeles, Cali-fornia.

3 Department of Nursing, University of California–San Francisco, San Francisco, California.

Supported by a grant from the Department ofDefense (17-99-1-9106).

Address for reprints: Kimlin Ashing-Giwa, Ph.D.,Department of Psychiatry and Biobehavioral Sci-ences, University of California–Los Angeles, 760Westwood Plaza, Box 62, Los Angeles, CA 90095;Fax: (310) 794-6297; E-mail: [email protected]

Received February 23, 2004; revision receivedApril 8, 2004; accepted April 20, 2004.

BACKGROUND. The inclusion of ethnic minorities in cancer-related studies contin-

ues to be an important concern for researchers. In this article, the authors present

1) a brief discussion of recruitment and measurement challenges in conducting

multiethnic survivorship research, and 2) recruitment outcomes and sample char-

acteristics for a health-related quality-of-life study with a multiethnic sample of

breast cancer survivors (BCS).

METHODS. A case– control, cross-sectional design with mixed sampling methods

was used. The Contextual Model for Recruitment and Enrollment of Diverse Sam-

ples was used to guide the protocol. BCS were recruited from the California Cancer

Surveillance Program, from hospital registries, and from community agencies.

Participation rates, demographic factors, and medical factors were compared. The

reliability of standard measures by ethnicity was assessed.

RESULTS. Seven hundred three women participated, including 135 African-Amer-

ican women (19%), 206 Asian-American women (29%), 183 Latina-American

women (26%), and 179 European-American women (26%). Participation was in-

fluenced by ethnicity, age, and site of recruitment. Overall, African Americans were

least likely to participate, and European Americans most likely to participate.

African Americans and Asian Americans were more likely to refuse, European

Americans and Latina Americans were more likely to agree to participate, and

European Americans and Asian Americans were most likely to complete the survey

after consenting. Measures possessed moderate to excellent reliability (0.64 – 0.91).

CONCLUSIONS. Despite important recruitment and measurement challenges, this

study obtained acceptable participation rates and good internal consistency of the

measures. The results demonstrate the utility of a culturally responsive approach

to health disparities research. Cancer 2004;101:450 – 65.

© 2004 American Cancer Society.

KEYWORDS: breast cancer, multiethnic, ethnic minority, recruitment.

Despite the 1993 National Institutes of Health Revitalization Actthat required inclusion of women and ethnic minorities, research

participation of these underrepresented groups remains a concern.1,2

Significant gaps exist in the cancer literature, particularly in terms ofhealth-related quality of life (HRQOL) among diverse ethnic groups.1,3

Low ethnic minority inclusion in cancer-related research limits thegeneralizability of findings and ascertainment of important contex-tual determinants (e.g., cultural, socioecological). Increasing partici-pation in health research is critical, because these communities oftenface disproportionate disease-related burden.4 – 6

Among women of all racial and ethnic groups, breast cancer(BCA) is the most common form of cancer and is the second leadingcause of cancer death.7 However, the vast majority of investigations,including survivorship studies, employ nonrepresentative, conve-

450

© 2004 American Cancer SocietyDOI 10.1002/cncr.20370Published online 18 June 2004 in Wiley InterScience (www.interscience.wiley.com).

nient samples with primarily middle-class to upper-class, European-American survivors. Therefore, re-searchers must employ special efforts to reach ethnicminority populations and include larger sample sizesto allow for better interpretability of the findings.

Recruitment ChallengesThe inclusion of ethnic minority and underservedpopulations into studies necessitates a paradigm shiftfrom health research to health disparities research.Stereotypes that minorities are difficult to contact andare unwilling to participate may contribute further toresearcher reluctance to actively recruit minorities.8,9

Additional weighty issues complicate health dispari-ties research further, including the sociopolitical, cul-tural, microlevel (or personal level), and study-relatedcontexts. In conducting research with diverse popula-tions, these four issues remain prominent researchand ethical dilemmas. In the sociopolitical sphere, thefact that ethnicity is an unfortunate proxy for povertyin the U.S. must be recognized. A significant numberof African Americans (23%), Asian/Pacific Islanders(10%), Latinos (21%), and Native Americans (32%) livebelow the poverty level.10 Furthermore, the historical,discriminatory experiences of minority populations inresearch (e.g., the Tuskegee syphilis study with Afri-can-American men) and the health care system hasled to a high level of mistrust and fear of being ex-ploited by the medical and research institution.11,12

The second issue is culture. Defined as a system ofshared beliefs and practices passed from one genera-tion to another, culture impacts health-related beliefsand attitudes, including spirituality/faith, beliefsabout cancer, language, acceptable means of commu-nication, and attitudes toward disclosure.4,13 Third,personal dimensions that affect research includeawareness (level of understanding of importance andgenerativity), acceptance (social/community support,fear of adverse side effects), and access to researchparticipation (protocol requirements, transportation,childcare, and family/work responsibilities).1,2,4,13,14

Ethnic minorities, particularly those with low socio-economic status (SES), are more likely to be excludedfrom participation due to comorbid conditions, par-ticularly if inclusion criteria are defined narrowly.1,2

The fourth domain, the study or scientific domain,addresses strategies for recruiting ethnic-minority andunderserved populations. Recruiting more represen-tative samples of ethnic minorities into cancer-relatedresearch may necessitate effectively addressing mac-rolevel or system-level as well as microlevel or person-al-level challenges. A study regarding the effectiverecruitment of underserved, diverse women into re-search studies developed a conceptual model that ad-

dressed three significant factors: awareness, accept-ability, and access.15 Investigators have highlightedbroad strategies for successful recruitment, includingcollaborating with community organizations to buildtrust, employing and training culturally sensitive/bi-lingual recruiters and interviewers, race/ethnicity andgender matching of interviewers, snowball recruiting,using culturally targeted mailings, conducting face-to-face interviews, providing positive reinforcement (e.g.,adequate remuneration), and informing participantsof the results.9,13,15,16 Dr. Ashing-Giwa has developed amodel that goes further to address culturally conso-nant research design and recruitment issues. Thismodel includes: 1) the purpose of the research, 2)conceptual framework and operationalization, 3)methods and procedures, 4) risk management andhuman subject protection, 5) reliable and valid instru-mentation, 6) drawing valid conclusions, 7) dissemi-nation, and 8) staff training.

Measurement ChallengesWith recent strides in cancer prevention and control,individuals with a BCA diagnosis are living longer, andHRQOL is an important area of research. The HRQOLframework can be used to examine BCA and its impacton patients’ physical, psychologic, social, and func-tional well-being.17–19 Physical functioning includesevaluation of disease progression and treatment-re-lated concerns (e.g., pain, fatigue). Psychologic func-tioning is measured by the presence or absence, aswell as levels, of depression, anxiety, and general emo-tional well-being. Social functioning refers to the abil-ity to engage in social activities. Functional well-beingis gauged by the ability to engage in self-care and toperform family and work responsibilities. It has beenshown that patient self-evaluation of these domains isa clinically sensitive method for assessing HRQOL andis preferred by most researchers in this field.20

The work of other ethnic minority researchershighlights the need to explore the impact of socioeco-logic factors on cancer-related experience and behav-iors (e.g., screening).21–24 Socioecologic factors includelife burden, family life, neighborhood, and other en-vironmental contexts. The principal investigator’s pre-liminary findings indicated that socioecologic factorsare strong predictors of HRQOL in BCS.23,24 Therefore,these results support the inclusion of socioecologicvariables in assessing HRQOL in cancer patients, find-ings that are contrary to the traditional concept thatviews socioecologic factors as important but distalinfluences.25

Furthermore, there is the challenge of languageand utility of the instruments. Non-English-speakingindividuals are excluded systematically because of dif-

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 451

ficulty and costs associated with translation and ad-ministration.26 This study utilized standard measuresthat were translated previously into many languagesof the target populations; however, some measuresrequired additional translations by the study.

This study employed culturally and socioecologi-cally responsive theoretic and recruitment models un-der development by Dr. Ashing-Giwa. These modelswill be published in the near future and may haveutility for enhancing the instrumentation and recruit-ment paradigm relevant to health-disparities research.This study was part of a larger study examining theHRQOL of African-American, Asian-American, Latina-American, and European-American BCS. In this arti-cle, we describe 1) the methods, protocol, and re-sponse rates across the four ethnic groups; 2) thedemographic and medical characteristics of the sam-ple; and 3) the standard measures used, constructvalidity for the standard QOL measures, and internalconsistency by ethnic group.

MATERIALS AND METHODSParticipants and SamplingFemale BCS primarily in Southern California were re-cruited from 1) the California Cancer Surveillance Pro-gram (CSP)-Desert Sierra Region; 2) hospital cancerregistries, including a large university specialized can-cer center (USCC); and 3) community agencies toobtain a sample that was diverse in ethnicity and SES.The objective was to include equivalent proportions(at least 125 participants) from each of the 4 majorethnic groups (African American, European American,Asian American, and Latina) to allow for intergroupcomparisons and to obtain sufficient power to con-duct multivariate analyses assessing associations ofthe predictor variables with QOL for each of the 4major groups. The Desert Sierra region (San Bernar-dino/Riverside) of the CSP registry, the USCC, andseveral community hospitals (serving underservedand ethnic minority populations) served as participantsources or recruitment sites. BCS contact informationfrom these cancer registries (the CSP registry in par-ticular) was very inaccurate (particularly for lower in-come survivors, who are more mobile and predomi-nantly ethnic minority). Thus, we also recruited fromcommunity agencies and support groups to obtain amore diverse sample.

A mixed-sampling method was employed to as-certain adequate numbers of survivors of color to con-duct meaningful statistics. Because of the muchsmaller number of African-American, Asian-American,and Latina survivors in the available population ofBCS, all individuals from these ethnic groups at eachrecruitment site were included in the potential partic-

ipant pool. However, because of their larger propor-tion in the population, European Americans weresampled randomly from the CSP registry (3%) andfrom the USCC (20%). However, 100% of the availableEuropean-American survivors from the large cancercommunity agency and the community hospital reg-istries were included in the potential participant pool.Table 1 describes the frequency and percent sampledby recruitment site.

Recruitment through the smaller communityagencies/support groups were self-selected, conve-nience samples of primarily survivors of color (thisgroup comprised 9% of the total sample; � 9% of theAfrican-American, European-American, and Latinasamples; and 15% of the Asian American sample).However, a greater proportion of the monolingualChinese (26%) and Korean (44%) survivors were re-cruited through this mechanism.

Eligible participants were 1) within 1–5 years of aBCA diagnosis and currently disease free, 2) diagnosedwith California Cancer Surveillance Program Stages0 –III BCA, 3) not diagnosed with another type of can-cer, 4) not diagnosed with another major disablingmedical or psychiatric condition, and 5) age � 18years. Women with advanced BCA or major medicalconditions (e.g., stroke, heart disease, degenerativeillnesses) or psychiatric conditions (e.g., psychosis)were excluded due to different disease progressionand prognosis and/or to overwhelming premorbidHRQOL concerns. Vulnerable women (e.g., those whowere pregnant or institutionalized) also were ex-cluded.

ProtocolThe study protocol was guided by the culturally re-sponsive model under development by Dr. Ashing-Giwa. Ethnically and linguistically diverse staff in-cluded African-American, Asian-American (Chinese,Korean, and Filipina), Latina, and Armenian researchassistants to enhance cultural sensitivity with the tar-geted populations. Successful recruitment strategies,

TABLE 1Potential Participant Sample by Recruitment Site

Recruitment site Frequency (%)

University specialized cancer center 669 (24)CSP registry 1248 (44)Hospital registries 309 (11)Cancer community agency data base 379 (13)Community agencies/support groups 247 (9)Total 2852

CSP: California Cancer Surveillance Program.

452 CANCER August 1, 2004 / Volume 101 / Number 3

ethical and cultural issues, training, and resolutions ofchallenges were addressed in biweekly meetings.

ProceduresUniversity of California–Los Angeles Institutional Re-view Board approval was obtained. Potential partici-pants were contacted between January 2001 and June2003 through community agencies or hospital andCSP registries.

Community agencies. Research staff formed workingrelationships with community agencies that servedthe targeted ethnic groups to facilitate interaction andto promote recruitment. Fliers that described thestudy (in English, Spanish, Chinese, and Korean) weredistributed to community agencies and supportgroups. Collaborating agencies also mailed recruit-ment letters that described the study to clients. Thefliers and recruitment letters instructed BCS to contactthe study if they were interested in participating or ifthey had questions.

Hospitals and CSP. Recruitment sites included six hos-pitals in the Greater Los Angeles/Long Beach area andthe CSP. Potential participants were ascertainedthrough the CSP and hospital registries. A letter wassent first to the physician of record for each potentialparticipant (if available) that requested a responsewithin 2 weeks if the individual should not be con-tacted (e.g., deceased, very ill). These women wereexcluded from recruitment.

All potential participants were assigned alter-nately to receive either a telephone survey or a mailedsurvey. They were then mailed a recruitment packetthat contained 1) an invitation letter detailing thestudy, 2) informed consent forms, and 3) a postage-paid envelope for returning signed consent forms. Theletter underscored the lack of research addressing eth-nic minority survivorship concerns and explained thatthe data obtained would contribute to future efforts toaddress psychologic concerns for all women with BCA.Documents also were available in Spanish, Chinese,and Korean. Interested individuals or those with ques-tions were instructed to contact the study. Up to 3follow-up telephone calls were placed to women whohad not responded within 2 weeks. For those withincorrect telephone numbers and/or addresses, theExperian locator service was used with limited successto identify more current contact information.

During initial telephone contact with a potentialparticipant, verbal consent for eligibility screeningwas obtained. The study’s objective and informedconsent form details, the confidential and voluntarynature of participation, the 60 –90-minute survey com-

pletion time, payment, and minimal risk were dis-cussed. Eligible women were instructed to sign andreturn one copy of the informed consent form. Theinterview or survey questionnaire was conducted inthe participant’s preferred language. Up to 3 remindertelephone calls were placed to participants whosemailed questionnaire had not been returned withinthe requested 3-week period. Reminder calls weremade primarily to ethnic minority women (particu-larly Asian Americans and African Americans) due to1) the smaller total available samples, 2) the greateramount of changed contact information, and 3) thelower response to initial mailing. The participation ofEuropean Americans was achieved primarily throughtheir response to the invitation mailing and screeningrather than through reminder telephone calls.

Efforts to minimize missing responses includedverbal and written instructions that 1) encouragedsurvivors to answer as honestly and completely aspossible; 2) emphasized the importance of obtainingthe various experiences of all women with cancer andthat all experiences are valid; 3) highlighted the trans-lational utility of the group data, particularly to healthcare providers; and 4) underscored confidentiality. Inaddition, a follow-up telephone call was made to ad-dress missing or unclear responses. For this proce-dure, the research assistant identified the unansweredresponse for the survivor and then asked whether theitem was unclear or was left blank on purpose; if it wasa refusal, then the assistant acknowledged the survi-vor’s wishes and thanked her for her participation. Inaddition, the Rand 36-item (short form) health survey1.0 (SF-36) and the Functional Assessment of CancerTherapy (FACT) instruments have procedures in placefor calculating scale/subscale scores when data aremissing. Briefly, these are mean scores; and, as such, ifa respondent answers a certain percentage of theitems in a scale/subscale (as determined by the au-thors of each specific standard instrument), then theaverages of these completed items are taken as themean scale/subscale scores. Therefore, missing datawere minimized greatly for this sample, and it is notanticipated that they had a significant effect on thefindings of this study.

Additional particular efforts were made to retainethnic minority BCS. During telephone contact, anumber of women who were assigned randomly to thetelephone interview indicated that they were too busyfor an interview. Therefore, they were given the optionof completing the mailed survey instead. Similarly,women who did not return their questionnaires intime were given the option of completing a telephoneinterview instead. Although this process inhibited theability to compare participation rates through random

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 453

assignment, we were able to retain many ethnic mi-nority BCS who otherwise would not have partici-pated. Desired sample sizes were reached earlier forthe European Americans and Latinas than for theAsian Americans and African Americans. However, en-rollment of all ethnicities continued at all recruitmentsites to control sampling problems.

At the time of completion of the questionnaire orinterview, women were mailed a $10 grocery gift cer-tificate. It has been demonstrated that this “paymentafter study completion” method is cost-effective anddoes not appear to have an adverse affect on BCSparticipation.27

InstrumentationStandardized measures as well as newly developed,culturally consonant measures were used. A culturallyand contextually relevant survey instrument was de-veloped based on previous studies with African-Amer-ican and European-American BCS,24 qualitative dataobtained from key informant and focus-group inter-views,28 and the research literature. The instrumentwas translated and back-translated into Spanish, Ko-rean, and Chinese. The questionnaire was pilot testedwith a total of 20 BCS. Based on similar, previousstudies, a sample of five women from each ethnicgroup (African American, Latina, Asian American, andEuropean American) was deemed adequate for thepilot testing. Revisions resulting from the pilot testswere incorporated into the final questionnaire. Nochanges were made to standard measures, with theexception of the adaptation of Marin et al.’s ShortAcculturation Scale for Hispanics. The primary mea-sures that were used are detailed below.

The Functional Assessment of Cancer Therapy–BreastVersion 4 of the Functional Assessment of CancerTherapy–Breast (FACT-B) is a standardized QOL in-strument that is comprised of a 27-item general can-cer concerns subscale (FACT-G), and an additional9-item breast cancer-specific subscale.29 The FACT-Ggenerates subscale scores on four factors (physical,social, emotional and functional well-being) and anoverall QOL score, which is obtained by averaging theitems (range, 0 –100). Items are rated from 0 (not at all)to 4 (very much), with a higher score indicating betterQOL. Items are written at a sixth-grade reading level,and translated versions include Spanish, Chinese, andKorean. High reliability and validity coefficients (�� 0.90) have been reported for the English30 andSpanish31 versions.

The SF-36The SF-36 is comprised of 8 general QOL subscalesthat assess perceptions of overall health status (phys-ical functioning, role function-physical, bodily pain,social functioning, mental health, role function-emo-tional, and energy/fatigue) and general health be-liefs.32 Items are rated using Likert-type scales: Sub-scale scores range from 0 to 100, with higher scoresindicating better HRQOL. Good reliability (� � 0.78)and validity have been reported.33 This widely usedinstrument has been standardized with normativepopulations, used in many health-related studies, andtranslated into several languages.

Life Stress Scale.The 19-item Urban Life Stress Scale examines the so-cioecologic context.24 Levels of stress associated withvarious aspects of life are assessed (finances, housing,employment, family environment, neighborhood en-vironment, public services, community relations, dis-crimination/racism, and crime/violence). Items arerated from 1 (extreme stress) to 5 (no stress) and areaveraged into a mean Life Stress score. This new scalehas been used in normative and cancer-preventionstudies with ethnic minorities and with African-Amer-ican and European-American BCS with good reliabil-ity (� � 0.77– 0.86).22,24

Quality of Medical Care–SatisfactionFor this study, six of the eight items on the Interper-sonal Aspects of Care subscale of the Adherence De-terminants Questionnaire (ADQ) were selected to as-sess patient perception of the quality of physician-patient relationship. The 38-item ADQ measuresaspects of patient adherence to treatments (interper-sonal aspects of care, communication and rapport,perceived benefits/costs, perceived severity of illness,perceived susceptibility, subjective norms, intentionsto adhere, and support/barriers) on a scale from 1(strongly disagree) to 5 (strongly agree).34 Reliabilityand validity coefficients ranged from 0.63 to 0.94.

SpiritualityThese 5 items measure the role of spirituality in cop-ing with cancer and were developed from the princi-pal investigator’s preliminary studies with multiethnicsamples of BCS (� � 0.88).

Body ImageThe Body Image Scale is comprised of five relevantitems from the nine-item breast cancer-specific sub-scale of the FACT-B and two new items that weredeveloped from the principal investigator’s prelimi-

454 CANCER August 1, 2004 / Volume 101 / Number 3

nary studies with multiethnic cervical carcinoma sur-vivors and BCS. The internal consistency of this scaleis discussed below (see Results).

Sexual ImpactThis three-item scale was developed from the princi-pal investigator’s preliminary studies with multiethniccervical carcinoma survivors and BCS. The effect ofBCA on sexual desire, pleasure, and sexual relation-ships is assessed. Items are scored on a Likert-typescale from 1 (very positive) to 5 (very negative). Theinternal consistency of this scale is discussed below(see Results).

Short Acculturation ScaleThe Short Acculturation Scale for Hispanics is a 12-item measure that accesses language use, media use,food preference, and ethnic social relations (adaptedfrom Marin et al.35). Validity and reliability are com-parable to other published scales. Originally devel-oped for Latinos, several studies have adapted andvalidated this scale for use with Chinese-Americanand Filipino-American populations.36,37 In the currentstudy, eight questions were selected: interethnic inter-action, ethnic group immersion, food and media pref-erence, and language use. With the exception of theitem measuring media preference, items were ratedon a five-point Likert-type scale. Answer choices weremodified to apply to both Latinas and non-Latinas(e.g., “only Spanish” was changed to “only your ethnicgroup’s language”).

Data Management and AnalysesData were managed under a subject identificationnumber to maintain confidentiality. Questionnaireswere kept in a locked file cabinet. Analyses were con-ducted using the SAS statistical software package (SASInstitute, Inc., Cary, NC).38 Chi-square tests and t testswere used to gauge differences by ethnic group in theproportion of women who consented to participateand differences in demographic and medical charac-teristics by ethnicity. Because of the small cell sizes forthe disaggregated Asian and Latina ethnic subgroups,significance tests were conducted comparing only thefour major ethnic groups (African American, EuropeanAmerican, all Asians, and all Latinas). Internal consis-tency and construct validity (factor analysis) by ethnicgroup were assessed for scales and subscales. Partici-pation rates, defined as the proportion of contactswho completed the interview or mailed survey out ofthe total eligible contacts, were calculated for eachethnic group. Scoring guidelines for the FACT definevalid subscale scores as those that have � 50% of theitems in a subscale completed and define valid overall

scale scores as those with 80% of all items in theFACT-G completed (22 of 27 items). With the excep-tion of one item in the Social/Family subscale of theFACT (satisfaction with sex life), there were very fewmissing items by subscale for both the FACT and theSF-36 for the total sample and by ethnicity. Only onerespondent did not answer enough items for a validglobal FACT-G QOL score; for the FACT Physical WellBeing subscale, Family Well Being subscale, and BCA-specific concerns subscale, only one respondent foreach of these subscales did not answer enough itemsfor valid subscale scores. For the SF-36, 96% of respon-dents had no missing data and 99% of respondentshad � 1 missing item). There were no significant dif-ferences noted with regard to the proportion of miss-ing data by ethnicity.

RESULTSRecruitmentRecruitment results are described in Figures 1–5. Ofthe 2852 recruitment letters mailed, 368 (13%) were“expired” (returned to sender, phone number not inservice, deceased), and 1265 (44%) were “inaccessible”(no response to recruitment letter or to follow-up tele-phone call if telephone number available). It was notpossible to disentangle the true recruitment status ofthe inaccessible individuals. These woman can be cat-egorized as 1) unreachable (incorrect contact informa-tion but mail or telephone call not returned by newresidents), 2) passive refusals (no direct written orverbal refusal), and 3) deceased (although no deathnotification was made to the registries, agency, orstudy). Most of the potential participant pool was ob-tained through registries: 44% through the CSP, 24%through a USCC, 13% through a large cancer commu-nity agency’s data base, and 11% through local hospi-tal registries. An additional 9% of participants werecontacted through cancer advocacy groups, commu-nity agencies/clinics, and support groups.

In total, 1219 BCS (43%) were accessible. Of these,134 BCS (11%) were ineligible, 382 BCS (31%) refused(including 139 noncompleters [i.e., women who con-sented to participate but did not complete the surveyby the end of the study]), and 703 BCS (58%) com-prised the final sample. Reasons for refusal includednot wanting to remember the BCA experience, beingtoo busy or under stress, questions too private, ques-tionnaire too lengthy, and disapproval of family mem-ber. Greater than 10% of women completed the alter-nate data-collection method (e.g., they were assignedthe telephone interview but requested a mailed ques-tionnaire); the majority changed to the mailed ques-tionnaire from the telephone interview and were more

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 455

likely to be ethnic minority, particularly Latina andAfrican American (P � 0.05).

Participation RatesDemographic differences exist among direct refusals,noncompleters (passive refusals), and those who com-pleted the survey. Older women (age � 65 years) andwomen who were recruited from hospital and CSPregistries were more likely to refuse compared withwomen who were recruited through cancer commu-nity agencies (P � 0.001). African Americans and AsianAmericans were more likely to refuse compared withLatinas and European Americans (P � 0.001); AfricanAmericans and Latinas were less likely than European

Americans and Asian Americans to complete the sur-vey after agreeing to participate (P � 0.001). Partici-pation rates by ethnicity and recruitment site are de-tailed in Figures 1–5. Overall, European Americanshad the highest participation rate, and African Amer-icans had the lowest. Year of diagnosis and diseasestage did not appear to affect participation rates sig-nificantly. Data from hospital and CSP registries werelimited and therefore affected the ability to comparenonresponders, refusals, noncompleters, and partici-pants. We had access to some medical characteristicsof nonresponders and refusals (e.g., year diagnosed,disease stage, age at diagnosis) but had no sociode-mographic data beyond age and ethnicity.

FIGURE 1. Recruitment outcomes for

the total sample. AA: African American;

EA: European American; L: Latina; API:

Asian/Pacific Islander; U: other/un-

known.

FIGURE 2. Recruitment outcomes for

the California Cancer Surveillance Pro-

gram Registry. AA: African American;

EA: European American; L: Latina; API:

Asian/Pacific Islander; U: other/un-

known.

456 CANCER August 1, 2004 / Volume 101 / Number 3

The final sample of 703 BCS included 135 AfricanAmericans (19%), 206 Asian Americans (29%), 183Latinas (26%), and 179 European Americans (26%). Ofthese, 241 women (34%) completed the telephone in-terview, and 462 women (66%) completed the mailedsurvey. Most participants (526 women; 75%) were re-cruited through the cancer community agency database and the CSP, USCC and hospital registries; 177women (25%) were recruited through communityagencies and support groups. Using a diversity oftypes of recruitment sites was key in obtaining a di-verse sample. Nearly one-half (48%) of the African-American participants were contacted through theCSP; most Asian-American participants were con-tacted through the CSP (23%), the USCC (25%), andcommunity agencies/support groups (30%); most

Latina participants were contacted through the CSP(26%) and community agencies/support groups(32%); and most European-Americans were contactedthrough the USCC (33%) and the cancer communityagency data base (30%).

Demographic and Medical CharacteristicsDemographic characteristics are described in Table 2.The Latina group was comprised of Mexican Ameri-cans (69%), Central Americans (18%), and other Lati-nas (e.g., South American, Cuban, etc.; 13%). TheAsian-American group was comprised of ChineseAmericans (41%), Filipina Americans (19%), KoreanAmericans (14%), Japanese Americans (13%), andother Asians (e.g., Indian, Thai, Vietnamese, etc.; 13%).

FIGURE 3. Recruitment outcomes for

hospital registries. AA: African American;

EA: European American; L: Latina; API:

Asian/Pacific Islander; U: other/un-

known.

FIGURE 4. Recruitment outcomes for

the university specialized cancer center.

AA: African American; EA: European

American; L: Latina; API: Asian/Pacific

Islander.

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 457

FIGURE 5. Recruitment outcomes for

the Cancer Community Agency Data-

base. AA: African American; EA: Euro-

pean American; L: Latina; API: Asian/

Pacific Islander; U: other/unknown.

TABLE 2Demographic Characteristicsa

Variable

No. of women (%)

Totalsample(n � 703)

AfricanAmerican(n � 135)

White(n � 179)

All Latina(n � 183)

All Asian(n � 206)

Latina subethnic demographics Asian subethnic demographics

MexicanAmerican(n � 126)

CentralAmerican(n � 33)

OtherLatina(n � 32)

ChineseAmerican(n � 85)

JapaneseAmerican(n � 26)

FilipinaAmerican(n � 39)

KoreanAmerican(n � 29)

OtherAsian(n � 27)

Mean age (yrs)b 55 56 57 53 54 53 54 55 54 57 55 53 52Relationshipb

Partnered 455 (65) 64 (47) 115 (64) 121 (66) 155 (75) 91 (72) 20 (61) 18 (56) 61 (72) 19 (73) 29 (74) 25 (86) 21 (78)Unpartnered 248 (35) 71 (53) 64 (36) 62 (34) 51 (25) 35 (28) 13 (39) 14 (44) 24 (28) 7 (27) 10 (26) 4 (14) 6 (22)

Educationb

� High school 101 (14) 9 (7) 5 (3) 69 (38) 18 (9) 53 (42) 13 (39) 4 (12) 10 (12) 0 (0) 1 (3) 5 (17) 2 (7)High school 76 (11) 17 (13) 13 (7) 27 (15) 19 (9) 15 (12) 4 (12) 8 (25) 5 (6) 2 (8) 0 (0) 9 (31) 3 (11)�High school 524 (75) 108 (80) 161 (90) 86 (47) 169 (82) 57 (46) 16 (49) 20 (63) 70 (82) 24 (92) 38 (97) 15 (52) 22 (82)

Incomeb

� $25 K 199 (29) 39 (30) 24 (14) 87 (50) 49 (25) 56 (48) 19 (58) 12 (37) 19 (23) 2 (8) 6 (16) 14 (50) 8 (31)$25–$45 K 147 (22) 36 (27) 38 (22) 36 (21) 37 (19) 24 (21) 7 (21) 7 (22) 19 (23) 1 (4) 6 (16) 7 (25) 4 (15)� $45–$75 K 146 (22) 27 (20) 43 (25) 27 (16) 49 (25) 21 (18) 2 (6) 7 (22) 21 (26) 8 (34) 13 (35) 4 (14) 3 (12)� $75 K 182 (27) 30 (23) 68 (39) 23 (13) 61 (31) 15 (13) 5 (15) 6 (19) 22 (27) 13 (54) 12 (33) 3 (11) 11 (42)

Occupationb

Homemaker 179 (26) 14 (10) 31 (17) 87 (48) 47 (23) 67 (53) 11 (34) 11 (34) 21 (25) 3 (12) 6 (15) 13 (45) 4 (15)Managerial/professional 228 (33) 52 (39) 73 (41) 32 (18) 71 (35) 24 (19) 3 (9) 9 (28) 31 (37) 13 (50) 13 (33) 4 (14) 10 (37)Technical/administrative/

sales 149 (21) 34 (25) 36 (20) 33 (18) 46 (22) 21 (17) 4 (13) 9 (28) 19 (23) 6 (23) 13 (33) 4 (14) 4 (15)Service/operator/factory

worker 96 (14) 20 (15) 19 (11) 24 (13) 33 (16) 10 (8) 11 (34) 3 (9) 12 (14) 2 (8) 6 (15) 7 (24) 6 (22)Other 49 (6) 15 (11) 20 (11) 6 (3) 8 (4) 4 (3) 3 (9) 0 (0) 1 (1) 2 (8) 1 (3) 1 (3) 3 (11)

Insuranceb

No insurance 83 (12) 8 (6) 11 (7) 17 (10) 25 (12) 12 (10) 3 (10) 2 (7) 4 (5) 0 (0) 2 (5) 15 (51) 5 (19)Public only 80 (12) 25 (20) 19 (12) 45 (26) 19 (9) 29 (25) 14 (45) 6 (19) 8 (9) 1 (4) 3 (8) 4 (14) 3 (11)Private 514 (76) 94 (74) 132 (81) 112 (64) 161 (79) 75 (65) 14 (45) 23 (74) 73 (86) 25 (96) 34 (87) 10 (35) 19 (70)

a Significance tests were conducted only comparing African Americans, whites, all Asians, and all Latinas due to small cell sizes for the disaggregated Asian and Latina ethnic subgroups. Only the largest Asian and

Latina ethnic subgroups are presented.b P � 0.01.

458 CANCER August 1, 2004 / Volume 101 / Number 3

There were significant differences by ethnicity. AfricanAmericans were most likely to be unpartnered. Latinaswere more likely to be less educated, to not workoutside the home, to have lower household income,and to be younger at the time of diagnosis. A greaterproportion of Latinas and Asians were uninsuredcompared with African Americans and EuropeanAmericans; a greater proportion of Latinas and AfricanAmericans had public insurance only (e.g., Medi-Cal)compared with Asian Americans and European Amer-icans.

Medical characteristics of the sample are detailedin Table 3. Significant differences by ethnicity werefound. On average, the Asian Americans were diag-nosed at earlier stage of disease (Stage 0). EuropeanAmericans were more likely to be diagnosed at anolder age. The ethnic minority women were more

likely to undergo mastectomies without reconstruc-tion. Differences by types of comorbidities includedhigher hypertension among African Americans, higherdiabetes among Latinas, and higher osteoporosisamong Asian Americans and European Americans. Asmall number of women reported cardiovascular/heart disease-related conditions; however, their con-dition did not affect daily activities, and these individ-uals were included.

Internal ConsistencyOverall, the standard (FACT-B, SF-36, Acculturation,Life Stress) and new (Spirituality, Satisfaction withCare, Body Image, Sexual Impact) measures indicatedmoderate to very good internal consistencies by eth-nic group (Table 4). However, some scales and sub-scales were less reliable for certain ethnic groups (e.g.,

TABLE 3Medical Characteristicsa

Variable

No. of women (%)

Totalsample(n � 703)

AfricanAmerican(n � 135)

White(n � 179)

All Latina(n � 183)

All Asian(n � 206)

Latina subethnic demographics Asian subethnic demographics

MexicanAmerican(n � 126)

CentralAmerican(n � 33)

OtherLatina(n � 32)

ChineseAmerican(n � 85)

JapaneseAmerican(n � 26)

FilipinaAmerican(n � 39)

KoreanAmerican(n � 29)

OtherAsian(n � 27)

Age at diagnosis(yrs)b 52 52 55 50 51 50 52 52 51 53 52 50 49

Stageb

0 77 (11) 6 (5) 16 (9) 18 (10) 37 (18) 10 (8) 3 (9) 5 (17) 17 (21) 4 (15) 5 (13) 8 (27) 3 (11)I 255 (37) 54 (41) 62 (34) 59 (33) 80 (40) 42 (33) 12 (36) 8 (27) 26 (31) 13 (50) 15 (38) 11 (38) 15 (55)II 267 (39) 51 (39) 71 (40) 75 (42) 70 (34) 52 (42) 13 (40) 14 (47) 36 (43) 5 (20) 15 (38) 6 (21) 8 (30)III 95 (13.7) 20 (15) 30 (17) 28 (15) 17 (8) 21 (17) 5 (15) 3 (10) 4 (5) 4 (15) 4 (11) 4 (14) 1 (4)

Yrs since diagnosisb 3.0 3.6 2.7 2.9 2.9 2.9 2.6 3.4 2.6 3.8 3.1 2.4 3.0How detected

Clinicalexamination 300 (44) 47 (36) 87 (51) 81 (45) 85 (44) 54 (44) 20 (61) 12 (37) 35 (44) 14 (61) 14 (37) 9 (36) 13 (50)

Nonmedical 375 (56) 84 (64) 85 (49) 100 (55) 106 (56) 70 (56) 13 (39) 20 (63) 44 (56) 9 (39) 24 (63) 16 (64) 13 (50)Surgeryb

Lumpectomy/other 348 (49) 70 (52) 99 (56) 87 (47) 92 (45) 60 (48) 14 (42) 19 (59) 36 (42) 16 (62) 15 (38) 13 (45) 12 (44)Mastectomy 236 (34) 43 (32) 40 (22) 73 (40) 80 (39) 51 (40) 13 (39) 9 (28) 33 (39) 6 (23) 18 (46) 14 (48) 9 (33)Mastectomy and

reconstruction 118 (17) 34 (16) 39 (22) 23 (13) 34 (16) 15 (12) 6 (18) 4 (13) 16 (19) 4 (15) 6 (15) 2 (7) 6 (22)Chemotherapy 406 (58) 83 (61) 104 (58) 110 (60) 109 (53) 78 (62) 15 (46) 20 (63) 48 (57) 12 (46) 21 (54) 13 (45) 15 (56)Radiation 460 (66) 84 (62) 127 (71) 119 (66) 130 (63) 80 (65) 19 (59) 26 (81) 50 (60) 22 (85) 23 (59) 16 (55) 19 (70)Hormone therapyc 377 (54) 60 (45) 106 (60) 88 (48) 123 (60) 61 (48) 18 (56) 15 (47) 52 (62) 13 (50) 27 (69) 13 (45) 18 (67)No. of comorbidities 2 3 3 2 2 2 2 2 2 2 2 3 3Hypertensionb 204 (29) 61 (45) 41 (23) 56 (31) 46 (22) 44 (35) 9 (27) 7 (22) 17 (20) 6 (23) 12 (31) 5 (17) 6 (22)Cardiovascular/heart

disease 29 (4) 5 (4) 8 (4) 7 (4) 9 (4) 4 (3) 2 (6) 1 (3) 4 (5) 2 (8) 0 (0) 2 (7) 1 (4)Diabetesb 65 (9.2) 14 (10) 6 (3) 32 (18) 13 (6) 21 (17) 5 (15) 6 (19) 6 (7) 2 (8) 2 (5) 0 (0) 3 (11)Arthritisb 195 (28) 46 (34) 59 (33) 51 (28) 39 (19) 36 (29) 8 (24) 9 (28) 10 (12) 5 (19) 9 (23) 8 (28) 7 (26)Osteoporosisb 58 (8) 2 (1) 20 (11) 11 (6) 25 (12) 7 (6) 1 (3) 4 (12) 16 (19) 1 (4) 3 (8) 2 (7) 3 (11)

a Significance tests were conducted only comparing African Americans, whites, all Asians, and all Latinas due to small cell sizes for the disaggregated Asian and Latina ethnic subgroups.b P � 0.01.c P � 0.05.

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 459

the FACT-B Emotional subscale for European Ameri-cans; the SF-36 Social Functioning subscale for AfricanAmericans; the Acculturation Scale for African Amer-icans and European Americans; and the Body ImageScale for Asian Americans and African Americans).

Construct ValidityExploratory factor analyses and correlation analyseswere performed to evaluate construct and concurrentvalidity of the two standard scales: FACT-G and SF-36.Common factor analyses with varimax rotation wereconducted for the entire sample and for each ethnicgroup. Common factor analysis was used instead ofprincipal component analysis because the error vari-ance represents a significant portion of the total vari-ance. Principal component analysis is appropriate ifthe observed variables measured are relatively errorfree (e.g., age, years of education, or number of familymembers) or if it is assumed that the error and thespecific variance represent a small portion of the totalvariance in the original set of variables.39 The criterionshould be adjusted downward when the common fac-tor model is performed. This is different from princi-ple component analysis, in which an Eigen value (vari-ance) � 1.0 is used commonly as a criterion to decidethe number of factors to be extracted. We compared

six factors for the FACT-G with the results of factoranalyses from initial validation studies by the authorswho developed the instrument.40 For the SF-36 items,8 –10 factors were retained, depending on the partic-ular ethnic group sample. Only factor loadings � 0.4are presented in the tables to show factor groupings.

FACT-GTable 5 presents the factor loadings on 6 factors for thewhole sample and subgroups (only participants with-out any missing data were included; n � 547 women)as well as those from the initial validation studies (n� 545 women). Overall, the factor structure of thissample was similar to results from initial validationstudies.40 First, 4 factors accounted for 98% of thecommon variance of the whole sample. All seven ofthe Physical Well Being items loaded on one factor.The Functional Well Being items also loaded on onefactor, with the exception of one item (able to work).Among the 7 Social/Family Well Being items, 4 factorsloaded highly on Factor 2. Three of 6 Emotional WellBeing items loaded highly on Factor 3.

For the European-American sample (n � 149women), the first 5 factors explained 92% of the com-mon variance. Factor structures for the Physical WellBeing and Functional Well Being subscale items wererelatively clean. Six of 7 Physical Well Being itemsloaded highly on Factor 2, whereas 5 of 7 FunctionalWell Being items loaded on Factor 1. One FunctionalWell Being item (able to work) loaded on Factor 2.Social/Family Well Being items and Emotional WellBeing items loaded on two separate factors. Low in-ternal consistency (� � 0.64) of Emotional Well Beingitems may be reflected in this factor structure. For theAsian-American sample (n � 147 women), the first 5factors accounted for 93% of the common variance.Six of 7 Functional Well Being items loaded on Factor1, as expected from its highest internal consistencycoefficient (� � 0.87). Physical Well Being and Emo-tional Well Being items loaded on two separate fac-tors. Four Social/Family Well Being items loaded onFactor 2. The first five factors accounted for 90% of thecommon variance in the African-American sample (n� 107 women). Physical Well Being items demon-strated the cleanest structures. Items for the otherthree subscales loaded on two separate factors. Thelack of structure of the Social/Family Well Being itemsmay be related to the lowest internal consistency co-efficient score (� � 0.77) among subscales for theAfrican-American sample. For the Latina sample (n� 144 women), the first 5 factors extracted accountedfor 91% of the common variance. Factor loadings forthe Latina sample demonstrated a clean factor group-ing of Physical Well Being items and a relatively clean

TABLE 4Internal Consistency of Standard Measuresa

MeasureTotalsample

AfricanAmerican

AsianAmerican

EuropeanAmerican

LatinaAmerican

FACT-B Global QOLFACT-B subscales 0.92 0.92 0.91 0.91 0.91

Physical 0.84 0.84 0.83 0.82 0.85Family/Social 0.81 0.77 0.80 0.82 0.80Emotional 0.74 0.78 0.77 0.64 0.72Functional 0.87 0.88 0.87 0.84 0.86

SF-36 subscalesPhysical Runctioning 0.91 0.93 0.89 0.88 0.93Physical Role Limitation 0.89 0.86 0.88 0.87 0.94Emotional Role Limitation 0.86 0.84 0.88 0.83 0.86Energy/Fatigue 0.85 0.87 0.79 0.90 0.86Emotional Well Being 0.84 0.82 0.83 0.86 0.84Social Functioning 0.76 0.64 0.79 0.88 0.71Pain 0.84 0.86 0.80 0.86 0.84General Health 0.80 0.79 0.84 0.76 0.80

Spirituality 0.86 0.70 0.88 0.87 0.78Satisfaction with care 0.83 0.79 0.82 0.83 0.80Body image 0.66 0.63 0.52 0.75 0.71Sexual impact 0.72 0.71 0.70 0.70 0.74Life stress 0.83 0.83 0.84 0.79 0.85Acculturation 0.82 0.63 0.88 0.62 0.87

FACT-B: Functional Assessment of Cancer Therapy-Breast; SF-36: Rand 36-item (short form) health

survey 1.0.a Standard � values were used.

460 CANCER August 1, 2004 / Volume 101 / Number 3

TABL

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Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 461

structure for Functional Well Being items. However,the Social/Family Well Being and Emotional Well Be-ing items loaded on multiple factors, and � 50% of theSocial/Family Well Being items (3 of 7) loaded highlyon retained factors.

The construct validity of the FACT-G in this sam-ple appeared to be comparable to that of initial vali-dation studies by the authors who developed the in-strument. The factor structure of the Physical WellBeing and Functional Well Being subscales best fit theconstructs intended by the instrument. In particular,this sample showed a better factor structure for Func-tional Well Being items compared with the initial val-idation studies. However, the factor structures for theSocial/Family Well Being and Emotional Well Beingitems were not as consistent as those of the Physicaland Functional Well Being items for this sample. Theproblems in Social/Family Well Being items may havebeen related to the high proportion of missing re-sponses (17%) on a particular item regarding satisfac-tion with sex life. Inconsistency in the factor structuresby ethnicity may have been due in part to differencesin sample size and construct equivalence across dif-ferent ethnic groups.41 In particular, the Social/FamilyWell Being subscale for African Americans and theSocial/Family and Emotional Well Being subscales forLatinas appeared to have inconsistent structure forthese samples.

SF-36Overall, the SF-36 items showed good construct valid-ity for the whole sample. The factor structure by eth-nic group was less consistent than that of the wholesample. Due to space limitations, only factor loadingson the General Health subscale by ethnicity are pre-sented in Table 6. For the whole sample (only partic-ipants without any missing data included; n � 676women), overall, items showed good factor structures.In particular, the subscales for Limitation Due toPhysical and Emotional Problems, Emotional Health,and Pain loaded on a single factor each. The other

subscales (General Health, Physical Functioning, Lim-itation Due to Physical Problems, and Energy/Fatigue)also had relatively good structures with only smallinconsistencies. However, no factor was extracted torepresent the construct of social functioning. For theEuropean-American sample (n � 174 women), whenonly the 9 factors that explained 98% of the commonvariance were considered, factor loadings were con-sistent with the exception of factors that representedgeneral health and physical functioning. Physicalfunctioning items loaded on two separate factors, andthree of five items loaded on a factor that representedgeneral health. In the Asian-American sample (n� 201 women), factor loadings were consistent forGeneral Health, Limitation Due to Emotional Health,and Pain items. The other subscales loaded on two orthree separate factors, except for one item (feelingtired), which did not load on any factor. For the Afri-can-American sample (n � 131 women), items com-prising General Health, Limitation Due to EmotionalHealth, and Pain factors had relatively good factorstructures. The other items loaded on multiple factorsor did not load highly on any factor. For Latinas (n� 170 women), items related to Limitation Due toPhysical and Emotional Problems presented consis-tent factor structures. The other items, including Gen-eral Health items, were structured less tightly.

Concurrent ValidityConcurrent validity was evaluated by examining cor-relations between the FACT-G and SF-36 subscales,which measure similar dimensions. Subscales shoulddemonstrate high correlations with correspondingsubscales that measure similar dimensions.42,43 Forthis sample, although each FACT-G subscale is corre-lated with all SF-36 subscales (P � 0.05), the FACT-Gsubscales tend to demonstrate the highest correlationswith their appropriate SF-36 subscale counterparts(see Table 7). For the entire sample, the FACT-G Emo-tional Well Being subscale demonstrated the highestcorrelation with the SF-36 Emotional Well Being sub-

TABLE 6Factor Loading of General Health Perception Items from the Rand 36-Item (Short Form) Health Survey byEthnicity

ItemTotal(n � 676)

EuropeanAmerican(n � 174)

AsianAmerican(n � 201)

AfricanAmerican(n � 131)

LatinaAmerican(n � 170)

General health �0.53 �0.61 0.61 �0.65Get sick easier than others �0.43 0.54 �0.49Healthy as anybody I know �0.63 �0.63 0.68 �0.62 �0.60Expect health to get worse 0.52 �0.41Health is excellent �0.64 �0.65 0.68 �0.69 �0.60

462 CANCER August 1, 2004 / Volume 101 / Number 3

scale (correlation [r] � 0.65). The FACT-G PhysicalWell Being subscale showed the highest correlationwith pain on the SF-36 (r � 0.68) and high correlationswith physical functioning, and limitations due tophysical problems, energy, and social functioning(range, 0.60 – 0.64). The FACT-G Functional Well Beingsubscale showed the highest correlation with theSF-36 Energy/Fatigue and Emotional Well Being sub-scales (r � 0.64) and high correlations with the Gen-eral Health and Social Functioning subscales (r� 0.62). One notable correlation was found betweenthe FACT-G Social/Family Well Being subscale and theSF-36 Emotional Well Being subscale (r � 0.46) ratherthan the SF-36 Social Functioning subscale (r � 0.39).

Similarly, for each ethnic group sample, theFACT-G subscales presented the highest correlationswith their appropriate SF-36 subscale counterparts.The FACT-G Emotional Well Being subscale had thehighest correlation with the SF-36 Emotional Well Be-ing subscale in all 4 ethnic groups (r � 0.6). The

FACT-G Physical Well Being subscale had the highestcorrelation with the SF-36 Pain or Energy/Fatigue sub-scales. The FACT-G Functional Well Being subscaledemonstrated the highest correlation with variousSF-36 subscales, including the General Health, Ener-gy/Fatigue, Emotion, and Social Functioning sub-scales, depending on the ethnic group. The FACT-GSocial/Family Well Being subscale was found to havethe highest correlation with the SF-36 Emotional WellBeing subscale, except in the Latina sample, in whichit had the highest correlation with the SF-36 SocialFunctioning subscale (r � 0.46). However, the FACT-GSocial/Family Well Being subscale also was found tobe correlated highly with the SF-36 Emotional WellBeing subscale in the Latina sample (r � 0.41). Thiscorrelation may suggest the highest correlation be-tween emotional well-being and social/family well-being, elucidating the fact that family and social func-tioning may have the greatest influence on women’semotional health.

TABLE 7Correlation Between the Functional Assessment of Cancer Therapy General Concerns Subscale and the Rand 36-Item (Short Form)Health Survey by Ethnicity

FACT-G subscales

SF-36 subscales

GH PF LP LE EF EM SF PA

Total (n � 703 women)Physical Well-Being 0.56 0.60 0.61 0.50 0.64 0.46 0.60 0.68a

Social/family Well-Being 0.37 0.22 0.29 0.34 0.38 0.46a 0.39 0.28Emotional Well-Being 0.47 0.29 0.34 0.43 0.47 0.65a 0.46 0.34Functional Well-Being 0.62 0.52 0.56 0.51 0.64a 0.64a 0.62 0.52

European American (n � 179 women)Physical Well-Being 0.52 0.48 0.64 0.47 0.58 0.31 0.60 0.68a

Social/Family Well-Being 0.43 0.25 0.36 0.38 0.36 0.51a 0.41 0.32Emotional Well-Being 0.46 0.26 0.42 0.56 0.52 0.67a 0.56 0.41Functional Well-Being 0.59 0.43 0.61 0.61 0.68 0.75a 0.65 0.47

Asian American (n � 206 women)Physical Well-Being 0.66 0.56 0.53 0.42 0.72a 0.54 0.56 0.68Social/Family Well-Being 0.29 0.22 0.28 0.41 0.35 0.45a 0.27 0.26Emotional Well-Being 0.50 0.27 0.29 0.38 0.45 0.62a 0.38 0.30Functional Well-Being 0.66a 0.57 0.53 0.50 0.64 0.64 0.53 0.54

African American (n � 135 women)Physical Well-Being 0.59 0.65 0.62 0.49 0.54 0.43 0.63 0.70a

Social/Family Well-Being 0.34 0.23 0.23 0.32 0.37 0.42a 0.35 0.27Emotional Well-Being 0.48 0.37 0.42 0.51 0.45 0.66a 0.48 0.37Functional Well-Being 0.60 0.57 0.60 0.51 0.63 0.59 0.67a 0.58

Latina (n � 183 women)Physical Well-Being 0.46 0.64 0.61 0.54 0.66a 0.48 0.57 0.63Social/Family Well-Being 0.42 0.16 0.23 0.23 0.41 0.41 0.46a 0.21Emotional Well-Being 0.42 0.25 0.27 0.31 0.45 0.64a 0.44 0.30Functional Well-Being 0.60 0.46 0.48 0.39 0.62a 0.57 0.61 0.42

FACT-G: Functional Assessment of Cancer Therapy general concerns subscale; SF-36: Rand 36-item (short form) health survey 1.0; GH: General Health; PF: Physical Functioning; LP: limitation due to physical health;

LE: limitation due to emotional problem; EF: energy/fatigue; EM: Emotional Functioning; SF: Social Functioning; PA: Pain.a The highest correlation.

Breast Ca in a Multiethnic Sample/Ashing-Giwa et al. 463

DISCUSSIONTo our knowledge, the current study represents thefirst truly multiethnic, multicultural study of BCS. Theexperiences shared by these 703 survivors will allowfor in-depth knowledge and increased understandingof health disparities among the four major ethnicgroups and the contributions of cultural and socioeco-logic factors to HRQOL. Overall, the measures pos-sessed moderate to excellent reliability, with internalconsistency scores ranging from 0.64 to 0.91. In gen-eral, the construct validity of the FACT-G in this sam-ple was comparable to that of initial validation studies.Factor structures of the Social/Family Well Being andEmotional Well Being subscales were not as consistentas those of the Physical and Functional Well Beingsubscales for this sample. Overall, SF-36 items showedgood construct validity for the sample (with the ex-ception of the social functioning subscale). In addi-tion, concurrent validity between the FACT-G and theSF-36 was demonstrated for this sample.

Particular efforts were made to over sample andrecruit participants from African-American, Asian-Amer-ican, and Latino communities that traditionally are un-der represented in research studies. This entailed con-ducting reminder telephone calls in addition to themailed invitation letter and accommodating women’spreferences and situations that dictated the method ofdata collection (telephone or mail). Follow-up and re-minder contacts were especially crucial in the enroll-ment and survey completion of the ethnic minority BCS.Furthermore, greater proportions of the total AsianAmericans and African Americans received remindercontacts compared with the Latinas and EuropeanAmericans. There was a larger potential sample of LatinaBCS compared with Asian Americans and African Amer-icans, and Latinas were more likely to agree duringscreening contact. However, Latinas and African Amer-icans were least likely to actually complete the survey.

The overall response rates were good but variedby ethnicity. These numbers may be underestimated.Attempts were made to contact a potential participantby telephone if she did not respond to the recruitmentmailing; however, we were unable to confirm that allsurvivors were notified. Consequently, some individ-uals who were categorized as nonrespondents actuallymay not have received notification of the study if theywere no longer at the address and/or telephone num-ber and if the current resident did not indicate that thepotential participant did not live there. This level ofprivacy and nondisclosure is common in ethnic mi-nority populations, particularly among immigrants.The greatest recruitment challenges were experiencesamong the Asian-American and African-American

BCS. Additional enrollment strategies (e.g., follow-uptelephone contact by linguistically matched recruit-ers/interviewers, flexibility in data collection method)were employed to obtain the participation of ethnicminority BCS. Overall, European Americans had thehighest participation rate, and African Americans hadthe lowest.

In addition, examining the data by recruitmentsite provides insight into where participants are re-ceiving treatment and who is accessing services. Mostpatients who were treated at the USCC and accessedservices through the large cancer community agencywere European American.

LimitationsAlthough the sample primarily is population-based,caution should be used in generalizing these findings.There is potential selection bias inherent in the char-acteristics of responders. Although we had access tosome medical characteristics of the nonresponders(e.g., year diagnosed, disease stage, age at diagnosis),we did not have information concerning their socio-demographic characteristics beyond age and ethnic-ity. Furthermore, follow-up telephone calls were madeprimarily to ethnic minority individuals (particularlyto Asian Americans and African Americans). In con-trast, contact with the European Americans and theirsubsequent participation was achieved primarilythrough mail contact rather than through follow-uptelephone calls.

ConclusionsThe current findings suggest that the standard andnew measures used are reliable instruments for as-sessing HRQOL with these diverse BCS populations.This study utilized Dr. Ashing-Giwa’s model to ad-dress study-level domains that are relevant for recruit-ing multiethnic samples to enroll diverse BCS popu-lations successfully. The results support previousfindings that the employment of particular strategiesto maximize ethnic minority participation results insuccess.2,9,13,16 Future directions in the ascertainmentand measurement of HRQOL among ethnically di-verse BCS populations must be grounded and guidedby appropriate, culturally consonant, theoretical, andpractical frameworks.

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