REVIEW

Breast cancer experience and survivorship among AsianAmericans: a systematic review

Kuang-Yi Wen & Carolyn Y. Fang & Grace X. Ma

Received: 2 June 2013 /Accepted: 11 October 2013 /Published online: 9 November 2013# Springer Science+Business Media New York 2013

AbstractIntroduction Breast cancer is the most common cancer inAsian American women, and the number of Asian Americanbreast cancer survivors is rapidly increasing. Although AsianAmericans are one of the fastest growing and mostheterogeneous ethnic groups in the United States, limited dataexist in regard to their breast cancer experience and survivorship.Methods A systematic review of the breast cancer experienceliterature was conducted and included studies of AsianAmericans or their subgroups as a major category of studyparticipants. Of the 125 studies reviewed, 10 qualitativestudies, 10 quantitative studies, 5 studies that used a mixed-method approach, and 1 intervention study met the criteria forinclusion.Results Qualitatively, Asian Americans reported unmet physicaland emotional needs and challenges during survivorship.Quantitative studies consistently found that socioeconomicstatus, cultural health beliefs, immigration stress, acculturationlevel, English proficiency, social support, and spiritualityassociated with Asian American breast cancer patients' healthbehaviors and health-related quality of life (HRQOL). Studiesalso revealed significant variation in breast cancer reaction andHRQOL within Asian American subgroups.Conclusions Although research on Asian American breastcancer experience and survivorship is sparse, we concludedthat Asian Americans experience disrupted HRQOL followingbreast cancer diagnosis and treatment, interwoven with their

cultural and socio-ecological system, and that programsfocused on improving cancer survivorship outcomes amongthis ethnic minority group are limited. Most studies haveconcentrated on the West coast population, and there issignificant underrepresentation of longitudinal and interventionstudies. Implications for study design, measurement, and futureresearch areas are also included.Implications for Cancer Survivors The results highlight a needto understand ethnic differences and to take into account social,cultural, and linguistic factors in breast cancer survivorshipexperiences among Asian American subgroups as a means todevelop culturally relevant and linguistically appropriateinterventions designed to improve HRQOL.

Keywords Survivorship . Breast cancer . Asian Americans .

Literature review

Introduction

Breast cancer is the most common form of cancer amongwomen of all racial and ethnic groups and the second leadingcause of cancer death in the United States [1]. Although theincidence rate of breast cancer has been declining among otherUS populations, the incidence rates are increasing dramaticallyfor specific Asian American subgroups [2, 3]. Despiteadvances in the early diagnosis and treatment of breast cancerand increasing numbers of Asian American breast cancersurvivors [4], fewer studies have focused on the breast cancerexperience of Asian American as compared to Caucasian andAfrican American women [5, 6]. This gap in knowledge isattributed to challenges in overcoming language barriers,differences in socio-cultural backgrounds, a lack of availableresources, and stereotypes about positive health profiles in theAsian American community, all of which contribute to cancerhealth disparities in the Asian American population [7–9].

K.<Y. Wen (*) : C. Y. FangCancer Prevention and Control Program, Fox ChaseCancer Center, 333 Cottman Avenue, Robert C. Young Pavilion,Philadelphia, PA 19111, USAe-mail: Kuang-Yi.Wen@fccc.edu

G. X. MaDepartment of Public Health, Center for Asian Health,Temple University, Philadelphia, PA 19122, USA

J Cancer Surviv (2014) 8:94–107DOI 10.1007/s11764-013-0320-8

Breast cancer demands significant physical and mentaladjustment and disrupts patients' quality of life [10]. Thediagnosis andmanagement of breast cancer might be especiallychallenging for Asian Americans in light of their culturallyspecific beliefs about cancer, limited access to linguisticallyappropriate medical services, a low level of acculturation, andeconomic difficulties [11, 12]. Because Asian Americans areone of the fastest growing and most heterogeneous ethnicgroups in the USA, and because Asian Americans have a largepresence among first-generation immigrants and underservedgroups with low literacy and limited medical care access, it isimportant to understand the breast cancer experiences andoutcomes of breast cancer survivors among this group.

Health-related quality of life (HRQOL) is a commonly usedframework to evaluate the impact of cancer and its treatment oncancer survivorship. Ashing-Giwa's Contextual Model ofHRQOL provides a structure that expands the traditionalHRQOL framework by including cultural and socio-ecologicaldimensions [13]. Guided by the Contextual Model of HRQOL,we aimed primarily to review the research conducted to date andto identify knowledge gaps in the current Asian American breastcancer survivorship literature. The Contextual Model has eightdimensions: four individual-level dimensions and four system-level dimensions. The individual-level contextual dimensionsconsist of individual-level factors and perceptions in regard tothe experience of cancer survivorship, including physical,emotional, and medical-related factors, as well as health practiceand medical adherence. The system-level dimensions includeselected contextual factors external to the individual that aredemonstrated to impact on the survivorship experience,including demographic and socio-ecological variables (i.e.,socio-economic status and social support), cultural variables(i.e., language, acculturation, health belief, and spirituality), andhealth care system variables (i.e., health care access andcommunication and satisfaction with provider). The ContextualModel of HRQOLwas used as a framework for summarizing thefindings of this review. Attention was focused on AsianAmerican ethnic subgroups that may account for differences intheir responses to breast cancer. Given the paucity of research onthis population, we searched for intervention studies in additionto qualitative and quantitative studies. Future research areas anddirection are discussed in the context of the review findings.

Methods

Data sources and search

We conducted a systematic review of the English languageliterature to locate studies that described the breast cancerpatient's experiences, reported HRQOL outcomes, or evaluatedthe interventions in terms of their potential to improve thesurvivorship experience for Asian American women in the

USA. According to the US Census, the term “Asian” refers topeople having origins in any of the countries from the Far East,Southeast Asia, or the Indian subcontinent. In addition tonationalities, Asian groups also include ethnic terms. Inidentifying studies of Asian Americans with breast cancer forthis review, we included both immigrants from Asian countriesto the USA and Americans of Asian descent. Four searchengines, PubMed, Google Scholar, PsychoInfo, and Web ofScience, were searched to identify literature published betweenJanuary 1995 and February 2013. We used a search strategythat combined the terms of each of the three concepts relevantto our research objective, such as Concept One: breast cancerexperience, breast cancer management, or breast cancersurvivorship; Concept Two: Asian, Chinese, Korean,Japanese, Vietnamese, Filipino, Cambodian, Malaysian,Pakistan, Thai, or Indian; and Concept Three: qualitativeinterview, quantitative survey, or intervention. Referencesections of relevant review articles and included studies alsowere scanned to identify additional eligible studies.Dissertations, book chapters, and conference abstracts wereexcluded.

Study selection and data extraction

Title and abstracts were reviewed by the first author todetermine the eligibility for inclusion in this review. Inclusioncriteria for articles were (1) qualitative or quantitative researchstudy that examined the needs, experience, or HRQOL-relatedfactors or research on an intervention to improve patientoutcomes; (2) provided data on Asian Americans or AsianAmerican subgroup breast cancer survivors, from newlydiagnosed up to unlimited years post-diagnosis; (3) researchconducted in the USA.

Of the 125 studies that were identified and reviewed, 26studies met our criteria. Studies were coded by the first authoron 13 predefined categories previously employed in a reviewstudy on HRQOL in Hispanic breast cancer survivors [14].The second author reviewed all 26 studies and correspondingcoding. Disagreements were resolved by consensus orreference to the third author.

Results

For socio-demographic and cancer-related descriptive data oneach study's sample, see Table 1 and for information onresearch design and a summary of findings, see Table 2. The26 identified studies included 10 qualitative studies, 10quantitative cross-sectional studies, 5 mixed-method studiesthat used both qualitative and quantitative approaches, and 1intervention pilot study. Of all the studies, 16 reported theirfindings from 5 identical or overlapping samples. A total of 14studies included multi-ethnic samples as a means to explore

J Cancer Surviv (2014) 8:94–107 95

differences among Asian American and Asian Americansubgroup, Caucasian, African, and Hispanic survivors.However, we discuss only Asian American-specific resultsin this review, including 12 studies focused exclusively onAsian Americans or Asian American subgroups. The majorityof the studies (n =22) were exclusively conducted with orincluded participants from California. The sample sizes ofAsian American participants in the 10 qualitative studiesranged from 9 to 70 women with two studies focusedexclusively on the Chinese population. Among the 10quantitative studies, the sample size of the Asian Americanpopulation ranged from 47 to 206, with one study focusedexclusively on the Korean population. The sample size forAsian Americans among the 5 mixed-method studies rangedfrom 22 to 206 (n =206 was only for the quantitative part ofLim et al.'s study [37]), with one study focused exclusively onthe Chinese population. The only intervention study identifiedin this review was a pilot study of an expressive writingintervention among Chinese American breast cancer survivors(n =19) [32]. Among the 26 studies, most women had early-stage breast cancer, and their diagnosis duration varied, withsome newly diagnosed samples (<1 year) and some longer-term survivors (>4 years). A total of 18 studies allowedparticipants to complete the study in their native languages.Six studies assessed and reported acculturation levels amongparticipants.

Results are organized by the Contextual Model of HRQOL'sindividual-level and system-level dimensions. We reviewedqualitative and quantitative findings within each dimension.Any comparisons between Asian Americans and other ethnicgroups were documented within each dimension. To take intoaccount the diversity and heterogeneity among Asian Americansubgroups, an additional section, “Differences among AsianAmerican subgroups”, was included. Intervention andlongitudinal studies were summarized in an individual sectionas well.

Individual-level dimensions

Physical health

Fatigue, irritability, memory loss, decreased energy level,recurring pain, and decreased QOL were reported as sideeffects of breast cancer treatment by Asian American women[21]. Wang et al. reported that Chinese American women,including both immigrants and US-born Chinese, experiencedpain and side effects from radiation, surgery, and hormonaltherapy [35]. In particular, Chinese immigrant women wereless likely to have their physical issues resolved, as comparedto Caucasians and US-born Chinese, due to their culturalnorms [35]. Among a Chinese and Vietnamese sample,94 % reported experiencing symptoms with high prevalenceof severe intensity [29]. In terms of physical QOL, one study

conducted in Hawaii reported that Filipino women have worseoutcomes in terms of nausea/vomiting and symptom countthan do Japanese, Hawaiian, and Caucasian women [18].However, compared with Hispanics in another study, AsianAmerican women expressed fewer physical difficulties causedby breast cancer treatments [25].

Emotional health

The findings related to emotional health included anxiety,distress, fear of recurrence, and mental/emotional healthQOL. Asian American women reported their sadness andreluctance to recall their breast cancer experience, theiranxiety during exams, and their fear of cancer recurrenceand death [21]. Another qualitative study that examinedHRQOL after treatment among Chinese and CaucasianAmericans found that women's emotional concerns aboutrecurrence or metastasis were caused by physical distress[35]. Through an interview approach, Lee et al. found thatChinese and Korean American women reported that negativeemotions are barriers that impede good HRQOL [39].Emotional well-being was found to be directly associated withphysical QOL in a cross-sectional quantitative study thatincluded Asian American women [27]. In addition, AsianAmerican women reported similar levels of depressivesymptoms and had the same levels of rehabilitation problemsfollowing treatment as did the Caucasian women [15].

Ashing-Giwa and Lim reported that worry about theconditions getting worse or cancer recurrence as well asunhappiness or lack of peacefulness were reported as the mostbothersome concerns across all ethnic breast cancer survivorsin their study, including Asian Americans [31]. Among amulti-ethnic sample, Filipino women had significantly loweremotional functioning than did Caucasian, Japanese, orHawaiian women [18]. However, compared with Hispanics,Asian American women expressed less emotional distress[25]. Similarly, another quantitative study reported that,compared to Caucasians and African Americans, AsianAmericans showed the second-lowest level of emotionalwell-being, while Hispanic women exhibited the lowest level[28]. Although there were documented deficiencies in theiremotional outcomes, Asian American breast cancer survivorssought psychosocial services at a significantly lower rate thandid Caucasians [15, 16] and exhibited greater difficulty inseeking emotional help from family, friends, and healthprofessionals [27].

Cancer-specific medical factors

No study was identified that examined the effect of medicalfactors such as disease characteristics and treatment types onAsian American breast cancer survivor's experiences orHRQOL. It was found, however, that Asian American women

96 J Cancer Surviv (2014) 8:94–107

Tab

le1

Dem

ographicdataforstudiesincluded

inthereview

Authors

Study

sample

Age

Cancerstage

Tim

esincediagnosis

orsurgery

Education

Income

Sam

plelocation

Acculturationlevel/

language

preference/

placeof

birth

Asian

ethnicsubgroup

difference/focus

Kagaw

a-Singer

etal.[15]

n=11

Chinese

American,

n=11

Japanese

American,n

=12

Anglo

American

Chinese:M

=47

years

(34–74),Japanese:

M=59.6

years

(44–75),Anglo:

M=46.7

years

(36–68),Japanese

groupwas

significantly

older.

6stageI,22

stageII,

5stageIII,2

stageIV

6monthsto

3years

post-treatment

5high

school,30

somecollege

Not

reported

Los

Angeles

Interviewswereconducted

innativelanguagesbut

instrumentswere

used

inEnglish.10

(90%)Chinese

werelowacculturated

whileonly

1(9

%)

Japanese

was

low-

acculturated.The

Japanese

were

significantly

more

acculturatedthan

the

Chinese.

Differencebetweenthe

responsesof

theChinese

andJapanese

American

werealso

found.

Wellisch

[16]

n=18

Chinese-A

merican,

n=15

Japanese-

American,n

=13

Anglo-A

merican

Chinese

M=50.4

(12.1),Japanese

M=59.9(12.5),

Anglo

M=47.1

(8.7).Japanese

wom

enwere

significantly

older

than

theothergroups.

35stages

I&

II,11

stages

III&

IV.

The

Chinese

groupandthe

Japanese

group

varied

significantly

bystageof

disease.

M=2.7yearssince

diagnosisforall

groups

Nosignificantethnicity

differencesand

closelyparallelto

theUSCensus

recordson

Asian

American

wom

en'seducational

levels.

Not

reported

Los

Angeles

Interviewswereconducted

inparticipants'native

languages.Chinese

grouphadlower

acculturationlevel

than

theJapanese

group.

The

difference

between

Chinese-Americans

andJapanese-A

mericans

interm

sof

socialnetwork

sizesandtype

ofsupport

feedback

needed

was

observed.

Chiu[17]

n=15

Chinese

immigrants

M=47

years,

range=

33-67

3stageI,7stageII,

2stageIII,3

stageIV

M=4years(1–13.5)

sincediagnosis

4less

than

college,

8college

graduate,

3post-college

degrees

Not

reported

New

York,San

Francisco

Allim

migrantsinterviewed

inChinese.

Chinese

focus

Gotay

[18]

n=59

Japanese

origin,

n=11

Filipinoorigin,

n=19

Haw

aiian,

n=35

Caucasian

Japanese

origin

M=61

years,

Filipinoorigin

M=46.8

years,

Haw

aiian

M=57.4

years,

Caucasian

M=59.7

years.

Filipinobreast

cancerpatients

weresignificantly

youngerthan

Caucasian

and

Japanese

patients.

Not

reported,various

across

allstages

Diagnosed

between

4and6months.

Nosignificantethnic

differences

Not

reported

Haw

aii

Needto

understand

English

forparticipation.

Filipino

breastcancer

patientswereless

likely

than

othergroups

tohave

been

born

inthe

USA

.

Filipinos

hadlower

outcom

esthan

other

Asian

subgroupsin

thisstudy.

Ashing-Giwa

etal.[19]

n=10

Koreanmonolingual,

n=11

Chinese

(Cantonese)

monolingual,

n=13

Mixed

Asian

bilingual

Koreanmonolingual

M=56

(31–78),

Chinese

(Cantonese)

monolingual

M=56

(42 –81),

Mixed

Asian

bilingualM=53

(40–65)

1stage0,12

stageI,

11stageII,2

stageIII,1stage

IV,7

unknow

n.Halfo

fthe

Chinese

wom

endidnot

know

thestageof

theircancer.

Koreanmonolingual

M=1year(0–3),

Chinese

(Cantonese)

monolingual

M=5years

(1–17),M

ixed

Asian

bilingual

M=4(0–21)

Not

reported

Not

reported

California

The

KoreanandChinese

groups

wereless

acculturatedand

interviewed

intheir

nativelanguages.

Different

emerging

them

eswerediscussedbetween

Chinese

andKorean

groups.

Kagaw

a-Singer

andWellisch

[20]

n=18

Chinese,

n=15

Japanese,

n=13

Anglo

Chinese

M=50.4

(12.1),4Japanese

M=59.9(12.5),

Anglo

M=47.1

(8.7).Japanese

wom

enwere

significantly

olderthan

the

othergroups.

35stages

I&

II,11

stages

III&

IV.

The

Chinese

groupandthe

Japanese

group

varied

significantly

bystageof

disease.

M=2.7yearssince

diagnosisforall

groups

Nosignificantethnic

differencesand

closelyparallelto

theU.S.C

ensus

recordson

Asian

American

wom

en's

educationallevels.

Not

reported

Los

Angeles

Interviewswereconducted

inparticipants'native

languages.Chinese

grouphadlower

acculturationlevel

than

theJapanese

group.

Som

edifferencesof

emerging

them

esbetweenJapanese

andChinese

groups

werepresented.

Ashing-Giwa

etal.[21]

n=34

Asians(K

orean

monolingualn=11,

Chinese

monolingual

n=10,and

Asian

bilingualn=13)n=24

African

American

n=

13 Caucasian

n=26

Latina

Asian

M=55

years,

range=

31-81

1Asian

stage0,12

Asian

stageI,11

Asian

stageII,2

Asian

stageIII,1

Asian

stageIV,7

Asian

stage

unknow

n.Half

oftheChinese

wom

endidnot

know

their

cancerstage.

Asian

M=5years

Not

reported.

Estim

ated

aslower-

middleto

lower

income.

Los

Angeles

The

Korean,Chinese

andLatinagroups

wereless

acculturatedand

interviewed

intheir

nativelanguages.

N/A

Wong-Kim

etal.[22]

n=30

Chinese

wom

en(15foreign-born

and

15US-born)

M=54

years

Included

allstages.

Diagnosed

within

24months.

The

foreign-born

wom

enreported

alowerlevelo

feducationthan

theUS-born

sample.

The

foreign-born

wom

enreported

alowerlevel

ofincomethan

theUS-bornsample.

SanFrancisco

Bay

Area

Foreign-born

participants

residedin

theUSA

forless

than

15years.

Chinese

focus.

J Cancer Surviv (2014) 8:94–107 97

Tab

le1

(contin

ued)

Authors

Study

sample

Age

Cancerstage

Tim

esincediagnosis

orsurgery

Education

Income

Sam

plelocation

Acculturationlevel/

language

preference/

placeof

birth

Asian

ethnicsubgroup

difference/focus

Kim

etal.[23]

n=85

Chinese,n

=39

Filipino,n

=29

Korean,n=26

Japanese,and

n=27

otherAsians

M=54

years

37stage0,80

stageI,

70stageII,

17stageIII

M=2.9yearssince

diagnosis.Japanese

Americanshad

significantly

longernumbers

ofyears(M

=3.8)

than

Chinese

(M=2.7)

and

KoreanAmericans

(M=2.6).

37high

school

orless,

52as

muchas

anassociatedegree,

117college

ormore.Korean

American

wom

enhadlower

educationlevel

comparedwith

othergroups.

49<=25,000,37

25,000–45,000,

4945,000–75,000,

61>75,000.C

hinese

Americanswho

reported

survey

inMandarinand

KoreanAmericans

hadlowerincome

levelscompared

with

othergroups.

Southern

California

Someparticipantschose

theirnativelanguages

(Mandarinor

Korean)

asthepreferredsurvey

language.A

cculturation

levelsweresignificantly

lowerforKorean

Americans,followed

byChinese

Americans

comparedwith

other

groups.

Asian

subgroup

differencesexist.

Levineetal.[24]

n=52

Asian/Pacific

Islander,n

=36

African

American,

n=52

Caucasian,

n=21

Latina

M=57

yearsfor

allw

omen

Forallw

omen:1

0stage0/DCIS,

77stageI,75

stageII

Asian

M=2.2years

sincediagnosis,

significantly

longerthan

the

Caucasian

group

(M=1.7years).

Forallw

omen:3

less

than

12years,10

high

school

graduate,41some

college,49college

graduate,47post

graduate

Not

reported

SanFranciscoBay

Area

Someinterviewswere

conductedin

Chinese.

36participantswere

born

inAsian/Pacific

Islands.

N/A

Lim

etal.[25]

n=206Asian,

n=183Latina

Asian

M=54

years

Asian:3

7stage0,

80stageI,70

stageII,17

stageIII

Asian:M

=2.9years

sincediagnosis

Asian:9

<high

school,

28=high

school,

169>high

school.

Asian

Americans

reported

higher

educationallevels

comparedto

Latinas.

Asian:5

1<25,000,41

25,000–45,000,41

45,000–75,000,

63>75,000.A

sian

Americansreported

higherincomelevels

comparedto

Latinas.

Southern

California

Nosignificantd

ifference

intheacculturation

levelb

etweenLatinas

(M=2.65)andAsian

Americans(M

=2.58).

Som

eparticipants

answ

ered

survey

intheirnativelanguages

(Spanish,K

orean,and

Chinese).

N/A

Lim

andYi[25]

n=51

KoreanAmericans

(47breastcancerand4

gynecologic),n

=110

Koreans

(72breast

cancerand38

gynecologic)

KoreanAmericans:

130–39years,

1040–49years,

2250–59years,

1860

orolder

KoreanAmericans:

14stage0,15

stageI,13

stage

II,7

stageIII

KoreanAmericans

yearssince

diagnosis:9less

than

1,28

2–5,

146or

more

KoreanAmericans:

8lessthan

high

school,20high

school

orsome

college,23college

graduateor

higher

KoreanAmericans:

27less

than

25,000,

2525,000

andmore

KoreanAmericans

recruitedfrom

Southern

California.

KoreanAmericans:50

birthplace

inKorea

and

49prim

arylanguage

isKorean.

Koreanfocus.

Levineetal.[26]

n=52

Asian/Pacific

Islander,n

=41

African

American,n

=53

Caucasian,n

=23

Latina

M=58

years(range

from

31–83)

forall

wom

en

Forallw

omen:1

0stage0/DCIS,81

stageI,78

stageII

M=2yearssince

diagnosisforall

wom

en.T

ime

sincediagnosisfor

Caucasians

was

significantly

lowerthan

Asian/Pacific

Islanderwom

en.

Forallw

omen:4

less

than

12years,11

high

school

graduate,44some

college,52college

graduate,48post

graduate.

Not

reported

SanFrancisco

Bay

Area

Someinterviewswere

conductedin

Chinese.

36participantswere

born

inAsian/Pacific

Islands.

N/A

Ashing-Giwa

andLim

(Psycho-

Oncology)

[27,28]

n=185Asian,n

=154

European,n=121

African,n

=166Latina

M=52

years(range

from

29–69)

forall

wom

en

85.5

%hadbeen

diagnosedwith

breastcancerin

stages

Ior

II.

M=2.9yearssince

cancerdiagnosis

forallw

omen

Not

reported

Not

reported

Southern

California

Someparticipants

answ

ered

survey

intheirnativelanguages

(Spanish,K

orean,and

Chinese).

N/A

Ashing-Giwa

andLim

(Qua

Life

Res)[27,28]

n=206Asian,n

=179

European,n=135

African,n

=183

Latina

M=55

years(range

from

29–91)

forall

wom

en

11.1

%stage0,

36.7

%stageI,

38.5

%stageII,

13.7

%stageIII.

Asian

Americans

weremorelikely

tohave

been

diagnosedat

earlierstage.

M=3yearssince

cancerdiagnosis

forallw

omen

14.4

%<high

school,

10.8

%high

school,

74.8

%>high

school

forallw

omen

29.5

%<25,000,21.8%

25,000–45,000,

21.7

%>45,000–7

5,000,27

%>75,000

forallw

omen

Southern

California

Someparticipants

answ

ered

survey

intheirnativelanguages

(Spanish,K

orean,and

Chinese).

N/A

Yietal.[29]

n=72

Chinese,n

=25

Vietnam

ese,n=1

halfChinese

half

Vietnam

ese

M=56

years

87%

stages

I–IIIA

M=28

monthsfor

allw

omen

Chinese

Americans

(68%)weremore

likelyto

complete

high

school

than

Vietnam

ese

Americans(28%).

Vietnam

eseAmericans

(86%)weremore

likelyto

have

income

less

than

50,000

than

Chinese

Americans

(65%).

Houston,T

exas

Interviewswereconducted

eitherin

Cantonese

orMandarinChinese,

Vietnam

eseor

English.

33%

ofthewhole

samplereported

having

theability

tounderstand

English

welland

amongthese,

91%

wereChinese

Americans.

Chinese

andVietnam

ese

focus.Vietnam

ese

reported

lower

outcom

esthan

Chinese.

Tsaietal.[30]

n=107Chinese

immigrant

wom

enforthe

quantitative

survey,n

=15

M=52.6

yearsfor

107sample

18stage0,41

stageI,

41stageII,8

stage

IIIfor107sample

29.5

monthssince

diagnosisfor

107samples.

4–52

months

sincediagnosis

for15

sample

18high

school,23post

high

school,44

college,22

graduate.H

igher

levelo

facculturation

was

associated

with

16<15,000,2415,000–

45,000,1445,001–

75,000,12>75,000.

Higherlevelo

facculturationwas

associated

with

a

Southern

California

Interviewswere

conductedin

Mandarin,Taiwanese

orEnglish.

Chinese

98 J Cancer Surviv (2014) 8:94–107

Tab

le1

(contin

ued)

Authors

Study

sample

Age

Cancerstage

Tim

esincediagnosis

orsurgery

Education

Income

Sam

plelocation

Acculturationlevel/

language

preference/

placeof

birth

Asian

ethnicsubgroup

difference/focus

wom

enforin-

depthinterview

amorefavorable

educationstatus.

morefavorable

incomestatus.

Ashing-Giwa

andLim

(Oncology

Nursing

Forum)[31]

n=206Asian,n

=179

European,n=135

African,n

=183

Latina

M=55

years(range

from

29–91)

for

allw

omen

11%

stage0,36

%stageI,38

%stageII,13%

stageIII,1%

notreported

M=3yearssince

cancerdiagnosis

forallw

omen

14%<high

school,

11%

high

school,

75%>high

school

forallw

omen

28%<25,000,21%

25,000–45,000,

21%>45,000–

75,000,26%>

75,000

forall

wom

en,4

%notreported

Southern

California

Someparticipants

answ

ered

survey

intheirnative

languages(Spanish,

Korean,and

Chinese).

N/A

Luetal.

[32]

n=19

Chinese

wom

enM=54

years,range

from

31–83years

80.9

%hadstageI

orIIdiagnosis.

80.9

%were

within

1to

4years'post-

diagnosis.

95.2

%completed

high

school

47.6

%hadincome

levellessthan

15,000

Southern

California

Expressivewritingin

Mandarinand/or

Cantonese.T

heaveragenumberof

yearsin

theUSA

was

19years(8–35years).

Chinese

Quach

etal.[33]

n=17

Chinese

(Cantonese

andMandarin

speakers),

n=9Japanese,n

=8

otherAsians,n=9

African

Americans,

n=9non-Hispanic

Whites,n=8Latinas

Chinese

Cantonese

speaker:M=61.3

(36–78),Chinese

Mandarinspeaker:

M=54.3(45–71),

Japanese:M

=56.1

(36–84),Other

Asians:M=57.8

(40–74)

34stageI,20

stage

II,6

stages

III

andIV

18=1yearsince

diagnosis,42

=2–3yearssince

diagnosis

15<=12

years,32

somecollege,

13post-college

15<30,000,9

30,000–

59,999,5

60,000–

79,999,18>=80,000,

13Don'tknow

orrefused.

SanFrancisco

Bay

Area

31Foreign-born.

Chinese

andLatina

groups

were

conductedin

their

nativelanguages.

N/A

Lee

atal.[34]

n=4Chinese,n

=5

Koreanwom

en,3

oncologists

M=54

(44–46)years

2stageI,5stageII,

1stageIII,1

stageIV

M=1.9yearsince

diagnosis

2high

school

orless,

7college

graduate

orabove

1<20,000

220,000–

49,999,4

75,000–

99,999,2

>100,000

WashingtonDC

Metropolitan

Area

M=18.6

yearslived

intheUSA

,7responded

asspeaking

English

wello

rfluently.

Chinese

andKorean

focus

Wangetal.[35]

n=37

Chinese

immigrant,

n=7US-born

Chinese,n

=27

non-Hispanic

White

M=57.7(38–73)years

forallw

omen

59.2

%stage0,

26.8

%stageI,

2.8%

stageII,

11.3

%don't

know

Monthssinceprim

ary

treatm

ent

completion:

28.2

%0–12

months,

40.9

%13–24months,

15.5

%25–

36months,

15.5

%36–

45months

25.4

%Grade

1–12,

7.0%

Vocational/

technicalschool,

18.3

%So

me

college,

31.0

%College

graduate,18.3%

Master's

orhigher

degree.C

hinese

immigrantshada

higherpercentage

(51.3%)of

educationlevel

belowcollege

comparedto

US-

born

Chinese

and

non-HispanicWhite.

16.9

%<30,000,14.1%

30,000–49,999,

12.6

%50,000–

69,999,18.4%

70,000–99,999,

23.9

%>100,000,

14.0

%don'tk

now.

Chinese

immigrants

hadahigher

percentage

(32.4%)

ofannualhousehold

incomes

below

$30,000compared

with

US-born

Chinese

andnon-Hispanic

White.

Northern

California

M=23.1

yearsin

the

USA

forChinese

immigrant

group.

Som

efocusgroups

andinterviewswere

conductedin

Chinese.

Chinese

Paxtonetal.[36]

n=96

Asian

American,

n=118African

American,n

=165

Hispanic,n=2634

White

Asian:M

edian=

52years

Asian:4

1StageI,

54stageII,1

stageIIIA

Asian:M

edian

time=

2years

sincediagnosis

Asian:9

high

school

orless,16some

college,71college

graduateor

more

Not

reported

California,Arizona,

Oregon,Texas

Not

reported

N/A

Lim

etal.[37]

n=206Asian

forthe

survey,n

=11

Korean

American

forthefocus

groups

M=54

Survey:3

7Stage

0,108StageI,100

stageII,20

stageIII

Survey:M

=3years

Survey:9

less

than

high

school,28

high

school

graduate,169

morethan

high

1school

Survey:5

1$25,000or

lower,41$25,000–

$45,000,51

$45,001–$75,000,

63$75,000

orhigher

California

KoreanBCSmight

have

adifferentp

attern

ofassociationin

the

doctor-patient

relationshipcompared

with

theculturalh

ealth

beliefsof

otherAABCS.

Lim

andPaek

[38]

n=86

Chinese

American,

n=71

Korean

American

M=55.3

Chinese:1

0Stage0,

22StageI,45

stageII,9

stage

III;Korean:

1Stage0,34

Stage

I,23

stageII,12

stageIII

Chinese:M

=3.2

years;Korean:

M=3.9years

43high

school

orless,

114higherthan

high

school

57<$25,000,25

$25,000–$45,000,

26$45,000–$75,000,

37<$75,000

Los

Angeles,

California

Lengthof

stay

inthe

USA

:M=23.9

years,

survey

was

innativelanguage.

Structuralpathsvaried

betweenChinese

American

andKorean

American

BCS.

Lee

etal.4[39]

n=4Chinese

American,

n=5Korean

American

M=53.7

years

8Stages

I–III

Allbuto

newere

within

5years

sincediagnosis

7college

graduate

andabove

6above$75,000

Maryland

Allim

migrants

Chinese

and

Koreanfocus

J Cancer Surviv (2014) 8:94–107 99

chose lumpectomy and adjuvant therapy at a significantlylower rate than did Caucasian women [15, 19].

Health efficacy

Health efficacy is the ability to engage in behaviors to promotegood health, prevent disease, and negotiate optionaltreatments and preferences with providers. In qualitativestudies, Asian Americans reported a lack of knowledge aboutbreast cancer and its treatment and a lack of resources inregard to managing survivorship [19]. In regard to treatmentdecision-making communication, Asian American womenalso were less likely to be assertive and were mostly relianton physicians to make breast cancer treatment decisions [34].Limited English proficiency was also reported as a majorbarrier to understanding breast cancer information andtreatment decision making [34].

In terms of health promotion behaviors during survivorship,Lim et al. found that both Asian and Hispanic Americanwomen reported changes in their diet patterns; further, AsianAmericans were more likely to increase their physical activitylevels and enhance their stress management skills [25].Similarly, Paxton et al. reported that more Asian Americanbreast cancer survivors met the guidelines for physical activitythan did Hispanic or African American survivors [36]. Further,health beliefs, doctor–patient relationship, and shared decisionmaking were influential factors in regard to adopting healthylifestyle practices during survivorship among Asian Americanbreast cancer survivors [37]. Information on alternativetherapies and relaxation skills also was reported as needed byChinese and Korean American women during breast cancersurvivorship [39].

System-level dimensions

Demographic and socio-ecological factors

Consistent with the existing literature on the breast cancerexperience, younger women had higher distress levels amongAsian American breast cancer survivors [15]. As forsocioeconomic status (SES), studies documented that AsianAmerican immigrants or those with lower acculturationreported a lower level of education and income than did US-born Asians with breast cancer [22, 23, 30, 35]. Further, SESindicators (income and education) were found to influence lifeburden and physical QOL among a multi-ethnic sample,including Asian American breast cancer survivors [27].Similarly, survivors with lower income level, lower educationlevel, or who were unemployed were likely to have less-favorable emotional well-being [31].

Within the framework of the Contextual Model, socialsupport is proposed to mitigate the negative impact of canceron HRQOL. Social support is recognized as central for

recovery, coping, and good QOL by Asian American breastcancer survivors [19, 21, 22], but they reported a lack of socialsupport [39], had greater difficulty requesting help fromothers, and sought psychosocial services at a significantlylower rate than did Caucasians [15, 16]. Support groupservices were reported as desired [39] and utilized [17, 19];but compared with Caucasian women, Asian Americanwomen have smaller social network size and compositionfrom limited sources of support [15, 16].

Cultural factors

Our review found a consistent relationship between the healthof Asian American breast cancer survivors and theiracculturation level, which is determined by place of birth,length of residency, or English proficiency. For example, theFilipino women in the Gotay et al. study were less likely tohave been born in the USA and had lower emotional andphysical outcomes than did the other groups [18]. Kim et al.also found lower HRQOL among less-acculturated women ina mixed-Asian group [23]. Other studies found that highlyacculturated Asian American breast cancer survivors receivedgreater social support [30, 40], which is recognized as centralto good HRQOL by Asian American women [22]. Further,foreign-born Chinese women are more likely to define QOLin terms of financial security as compared to US-born Chinesewomen, who frame QOL in terms of interpersonalrelationships [22]. English proficiency was reported as asignificant factor in symptom distress and HRQOL among aChinese and Vietnamese American group [29].

Culture also influences how Asian Americans react tobreast cancer and perceive their health. Asian Americanwomen reported feelings of self-consciousness andinadequacy, and perceived cancer as a stigma, not openlydiscussable with their families [21, 22]. Further, Asian culturaland gender socialization dictates that Asian American womenbe self-sacrificing and nurturing of their husband and family,serving as caregivers with obligations, not as dependents [19,20]. Compared with Latinas, Asian American women weremore likely to believe that their family and culturalbackground plays a role in their health [25]. Tsai et al. reportedthat traditional cultural beliefs persistently influence howChinese Americans interpret and cope with breast cancer intheir given sociocultural environment; as in their study,acculturation was found to be related to health beliefs, socialsupport, and life stress [30].

Spirituality also was an important influence among AsianAmericans. Family closeness, traditional Chinese values,religion, and Chinese support groups were recognized asspiritual resources among Chinese immigrant women withbreast cancer [17]. In multi-ethnic samples, Levine et al. foundthat more Asian American women reported that they werespiritual [24], were more likely to pray, felt closer to God, and

100 J Cancer Surviv (2014) 8:94–107

Table 2 Methodological data for studies included in the review

Authors Analyses of data/studytype

Measures or interview topics Results summary

Kagawa-Singeret al. [15]

Qualitative (structuredinterview) andquantitative (cross-sectional)

CARES, ASSIS—Arizona Social SupportInterview Schedule, Suinn-Lew Self-identityAcculturation scale, Weiner-Adler healthsymptoms, CES-D, Asian American BreastCancer Study Questionnaire, and QualitativeQuestionnaire of Breast Cancer Experience.

Asian American women chose breast conservingtherapy and adjuvant therapy at a significantlylower rate than the Anglo American women.Asian American women reported using differentmodes of help-seeking behavior but soughtprofessional assistance for psychosocialproblems at a significantly lower rate than Anglowomen.

Wellisch [16] Qualitative (structuredinterview) andquantitative (cross-sectional)

ASSIS—Arizona Social Support InterviewSchedule, ISSB—Inventory of SocialSupportive Behaviors, Qualitative Questionnaireof Breast Cancer Experience.

Asian Americans have greater difficulty requestingor accepting help from others than Anglo-American women post breast cancer.

Chiu [17] Qualitative (in-depthinterview)

Cultural-spiritual resources Chinese immigrant women experience theirspiritual resources through family closeness,traditional Chinese values, religion, alternativetherapy, art, prose and literature and Chinesesupport groups.

Gotay [18] Quantitative (cross-sectional)

QLQ-C30 (quality of life measure) Filipino women reported significantly worseoutcomes on emotional functioning, nausea/vomiting, and symptom count compared withother ethnic groups.

Ashing-Giwa et al.[19]

Qualitative (Focusgroup)

Attitudes, beliefs, knowledge about breast cancer,health care issues, quality of the patient–doctorrelationship, and cultural and socio-ecologicalissues

Issues regarding lack of knowledge about breastcancer, medical cost, time with doctor, culturalbeliefs about illness, gender role and familyobligations, and language barriers.

Kagawa-Singerand Wellisch[20]

Quantitative (cross-sectional) andqualitative (semi-structured interview)

Qualitative breast cancer experience questionnaire,CARES, Suinn-Lew acculturation scale,Revised Explanatory Model interview guide

Compared with Euro-American women, AsianAmerican women were expected to be self-sacrificing and nurturing of husband and family,and had a goal of harmony over intimacy.

Ashing-Giwa et al.[21]

Qualitative (focusgroup)

Attitudes, beliefs, knowledge about breast cancer,health care issues, quality of the patient-doctorrelationship, and cultural and socio-ecologicalissues

Asian Americans discussed how their feelingsabout their body affected their QOL. Asiansdiscussed feeling self-conscious, inadequate,self-confidence lost, and cancer as a stigma.Asians reported decrements in QOL andemphasized attitude affects recovery. Languagebarriers and needing more time with doctorswere also reported.

Wong-Kim et al.[22]

Qualitative (semi-structured interview)

Cancer beliefs, the meaning of a breast cancerdiagnosis, treatment effects, faith andspirituality, fate and fatalism, the effect of canceron patient's family role, cultural perceptions ofQOL

Women reported breast cancer as a stigma andinterpersonal support as central to a good QOL.Foreign-born Chinese women referenced wealthmore frequently while US-born Chinese womenindicated friendship when describing QOL.

Kim et al., [23] Quantitative (cross-sectional)

FACT-B and Breast Cancer Subscale (HRQOL),short acculturation scale, Urban life stressorscale, Social support scale.

The study observed lower HRQOL among lessacculturated Asian American breast cancersurvivors and among Korean Americansurvivors, which might be due to languagecapacity and other socio-ecologicalcharacteristics.

Levine et al. [24] Qualitative (in-depthinterview)

Examined the roles of spirituality and spiritualsupport among diverse women with breastcancer.

Main themes were: 1) God as a comfortingpresence, 2) Questioning faith 3) Anger at God,4) Spiritual transformation of self and attitudetowards others/recognition of own mortality, 5)Deepening of faith, 6) Acceptance, 7) Prayer byself. The highest percentage of women who saidthey were spiritual was Asian/Pacific Islandergroup.

Lim et al. [25] Quantitative (cross-sectional)

FACT-G (HRQOL), Health behaviors instrument,Multidimensional health locus of control

Asian American breast cancer survivors expressless emotional distress and less physical

J Cancer Surviv (2014) 8:94–107 101

Table 2 (continued)

Authors Analyses of data/studytype

Measures or interview topics Results summary

(cultural health beliefs, Acculturation scale,Interpersonal aspects of care subscale of theAdherence Determinants Questionnaire (doctor-patient relationship), shared treatment-relateddecision)

difficulties than Latinas. Asian Americans weremore likely to believe that their family situationand cultural background plays a role in theirhealth. Both groups reported changes in theirdiet patterns but Asian Americans were morelikely to increase their physical activity levelsand stress management skills.

Lim and Yi [25] Quantitative (cross-sectional)

SF-36 (QOL), Brief symptom inventory-18(psychological distress), Quality of Life-CancerSurvivor (QOL-CS)-Spiritual well-beingsubscale, Medical Outcomes Study (MOS)social support survey, religious involvementquestionnaire

The mediating effect of social support betweenspirituality and QOL for Korean Americans wasobserved.

Levine et al. [26] Quantitative (cross-sectional) andQualitative (in-depthinterview)

FACIT-B (QOL), FACIT-Sp (spirituality), ISEL(social support), SNI (social networks), POMS(mood), Benefit finding scale. Qualitativelyexamined the roles of spirituality and spiritualsupport among diverse women with breastcancer.

Quantitative data showed that women who prayedwere able to find more positive contributionsfrom their cancer experience than those who didnot pray. The interviews showed that AfricanAmerican and Asian/Pacific Islander womenwere more likely to pray and felt closer to Godand felt more compassion and forgiveness thanCaucasian women.

Ashing-Giwa andLim (Psycho-Oncology)[27, 28]

Quantitative (cross-sectional)

FACT-B emotional well-being sub-domain, Lifestress scale, SF-36, family burden items, workburden and capability items

Findings demonstrated that family and workburdens defined the functional strain. AsianAmericans showed the second lowest emotionalwell-being score while Latina Americansexhibited the lowest score.

Ashing-Giwa andLim (Qua LifeRes) [27, 28]

Quantitative (cross-sectional)

FACT-B (physical well-being), RAND 36 itemHealth Survey general health perception sub-domain, SF-36 pain sub-domain, FACT-Bemotional-well-being subscale, Medicaloutcomes social support survey, Life stress scale,Interpersonal aspects of care subscale of theAdherence Determinants Questionnaire,Comfort in health care system items, Diagnosticcare delay items.

Psychological well-being and life burden weredirectly associated with PQOL across all ethnicgroups. SES indicators significantly influencedlife burden and PQOL among ethnically diverseBCS. Asian Americans showed a significantrelationship between patient-doctor relationshipand perceived social support.

Yi et al. [29] Quantitative (cross-sectional)

English proficiency subscale of Southeast Asiansacculturation scale, Edmonton SymptomAssessment Scale, Quality of Life instrument-Breast Cancer

English proficiency was a significant factor insymptom distress and QOL. 94 % of the studysample experienced symptoms and that many ofthese were of severe intensity. The study samplealso reported lower levels of QOL comparedwith other studies. Vietnamese Americanwomen reported higher symptom distress andlower QOL compared with Chinese Americans.

Tsai et al. [30] Quantitative (cross-sectional) andqualitative (semi-structured interview)

Acculturation scale fromMarin et al., Health beliefscale from Ashing-Giwa et al., social supportmeasure, Urban life stress scale. Interviewtopics: experience of adapting to breast cancer,life experience after immigration across thetrajectory of breast cancer adjustment, ethnicidentity and daily cultural practices.

Acculturation was related to health beliefs, socialsupport, and life stress amongChinese Americanimmigrant women. Life stresses derived fromimmigration bring additional difficulties forimmigrant women living with breast cancer.

Ashing-Giwa andLim (OncologyNursing Forum)[31]

Quantitative (cross-sectional)

FACT-G emotional well-being subscale, SF-36mental health subscale

Indicators of less favorable emotional outcomeswere: 1) Latina American survivors, 2) Lowerincome earners, 3) Less-educated survivors, 4)Unemployed survivors, 5) Survivors who cannotspeak English, 6) younger survivors

Lu et al. [32] Pilot study of expressivewriting intervention

FACT-B, FACIT-F, Physical symptom checklist,PANAS, Posttraumatic Growth Inventory,PTSD symptom scale, IES-intrusion subscale

Expressive writing is associated with long-termimprovement of health outcomes amongChinese American breast cancer survivors and

102 J Cancer Surviv (2014) 8:94–107

felt more compassion and forgiveness than did Caucasianwomen [26]. Further, women who prayed were able to findmore positive contributions from their cancer experience thanthose who did not pray [26]. Consistent with the findings ofAshing-Giwa and her colleagues, Asian American womenwho participated in focus groups believed in the positiveeffects of prayer and used prayer to cope with their breastcancer [19, 21].

Healthcare system factors

A consistent finding among qualitative studies is that AsianAmericans generally reported limited English proficiency as abarrier to accessing health information and quality of healthcare as well as to doctor–patient communication and medicaldecision making [19, 21, 33, 34]. Identified healthcare systemissues included insurance and medical costs, limited time with

Table 2 (continued)

Authors Analyses of data/studytype

Measures or interview topics Results summary

participants perceived the intervention to beappropriate and valuable.

Quach et al. [33] Qualitative (23interviews and 7focus group)

Diagnosis, treatment, discrimination - medicalsetting, discrimination-other setting, coping andsocial support, immigrant stress

Among Asian immigrants, participants reportedexperiencing institutional and personallymediated overt types of discrimination,including lack of access to quality and readilyavailable translation services. Low Englishproficiency perceived as a barrier forinformation seeking and doctor-patientcommunication.

Lee at al. [34] Qualitative (in-depthinterview)

Language barrier, cultural differences, decisionmaking

For women with limited English proficiency,language was the greatest barrier tounderstanding information and makingtreatment-related decisions. Asian Americanwomen are less likely to be assertive and aremostly reliant on physicians to make treatmentdecisions.

Wang et al. [35] Qualitative (semi-structured interviewand focus group)

QOL after treatment, follow-up care, socialsupport and self care

Breast cancer survivors experienced pain and sideeffects from radiation, surgery, and hormonaltherapy. Physical distress caused emotionalconcerns about recurrence or metastasis.Chinese immigrant women were less likely tohave their issues resolved compared to non-HispanicWhite and US-born Chinese because ofcultural norms. Some Chinese immigrantsturned to Traditional Chinese Medicine for reliefor accepted the idea that physical distress waspart of survivorship.

Paxton et al. [36] Quantitative (cross-sectional)

SF-36 health survey (HRQOL), Women's healthinitiative physical activity instrument, BodyMass Index

More Asian American andWhite survivors met theguidelines for physical activity than AfricanAmerican and Hispanic survivors.

Lim et al. [37] Quantitative (cross-sectional) andqualitative (focusgroup)

Survey measures: Short Acculturation Scale,Multidimensional Health Locus of Control,Adherence Determinants QuestionnaireInterpersonal Aspects of Care Subscale, HealthBehaviors Scale including diet, exercise andstress management, and Treatment DecisionMaking Scale. Same topics for focus group

Inter-intrapersonal health beliefs, doctor-patientrelationship and shared decision making werepositively associated with adopting healthylifestyle practices.

Lim and Paek [38] Quantitative (cross-sectional)

Family Adaptability and Cohesion EvaluationScales-Family Communication Scale,Decisional Conflicts Scale, Perceived Efficacyin Patient-Physician Interaction Scale, SF-36

Self-efficacy in patient-physician communicationwas directly associated with HRQOL forChinese Americans; family communication wasrelated to HRQOL for Korean Americans.

Lee et al. [39] Qualitative (in-depthinterview)

Quality of life, cultural factor and coping withnegative emotions

Lack of social support, limited resources, negativeemotions are barriers for HRQOL. Lowemotional help seeking with family, friends andhealth professionals. Alternative therapies andrelaxation skills information is needed.

J Cancer Surviv (2014) 8:94–107 103

providers, and lack of medical translation services [19, 21, 33,34]. In particular, Quach et al. reported that Asian Americanimmigrants with breast cancer perceived discrimination byhealth care providers as a result of these immigrants' havinglow English proficiency, limited education, as an immigrant(outsider), and lower economic status [33]. In contrast, inAshing-Giwa et al.'s focus group study, most of the womendid not feel that they were discriminated against or treateddifferently when accessing care but did feel that their healthinsurance, financial situation, and knowledge of their illnessaffected the quality of care received [19]. In quantitativeresearch, the doctor–patient relationship was found to besignificantly associated with social support [27] and withadopting healthy lifestyle practices [37].

Differences among Asian American subgroups

In regard to comparisons between Chinese and other AsianAmerican subgroups, two studies reported the differences inthe type of preferred feedback and in social network utilizationbetween Chinese and Japanese breast cancer patients [15, 16].Chinese women tend to need less advice and generally receivesocial support from family. Japanese women need lesspositive feedback, have smaller social network size, and aremore likely to obtain social support from co-workers andfriends, less so from family. Yi et al. also documented thatChinese women reported lower symptom distress and higherHRQOL as compared with Vietnamese women [29]. Chineseand Korean women exhibited different reactions to breastcancer, according to Ashing-Giwa et al. [19]. In terms of therelationship between communication and HRQOL, self-efficacy in doctor–patient communication was associated withHRQOL for Chinese women, while family communicationwas related to HRQOL for Korean women [38].

Further, in a quantitative study of a mixed group of AsianAmerican breast cancer survivors, lower HRQOL wasobserved among Korean women [23].Using a mixed-methods approach, Lim et al. found that the cultural healthbeliefs of Korean women has a different association with thedoctor–patient relationship than it does among other AsianAmerican subgroups [37].

Intervention and longitudinal studies

In the only intervention study that we identified in theliterature, Lu et al. evaluated the potential benefits of anexpressive writing intervention among Chinese-speakingbreast cancer survivors [32]. Despite the small sample size(n =19), the findings indicated that participants reported highcompliance and satisfaction, and the intervention wasassociated with improved HRQOL outcomes. No longitudinalstudies that assessed survivorship-related outcomes among

Asian American breast cancer survivors were found in oursearch.

Discussion

Summary of findings

The present review is the first to summarize the survivorshipliterature among Asian American breast cancer survivorsusing a Contextual Model of HRQOL. A total of 26 studieswere included, of which 16 used five identical or overlappingsamples [15, 16, 19–21, 23–28, 30, 31, 34, 37, 39].Synthesizing the findings is challenging due to the variabilityamong the study approaches and sample sizes as well as thecultural diversity of the Asian American subgroups.

Asian Americanwomenwith breast cancer have significantphysical needs, and they are less likely to have them resolved,as compared to Caucasians and US-born Asian Americans[21, 35]. Commonly reported breast cancer treatment sideeffects, including fatigue and pain, were experienced byAsian American women and required attention from healthcare providers [18, 21, 29, 35]. However, because healthcareservices are obtained through a combination of governmentand private insurers, Asian Americans, especially those whorecently immigrated and who have limited Englishproficiency and are not familiar with US healthcare policies,may have difficulty navigating the medical system andinteracting with providers. As highlighted in the Institute ofMedicine report [41], cancer patient follow-up care is usuallyfragmented and without a strategy to assist patients innavigating survivorship. For Asian Americans with limitedEnglish proficiency and limited insurance coverage, effectivesurvivorship communication with oncologists and primarycare physicians is extremely challenging. Thus, the significantexpansion of the Asian American breast cancer survivorpopulation in the coming years will require better-coordinated and patient-centered follow-up care. Futureresearch is needed to examine the cultural relevance ofsurvivorship care plans developed for Asian Americanpopulations.

The studies in our review indicate that Asian Americanbreast cancer survivors reported levels of emotional distressand fear of recurrence comparable to those of Caucasianwomen [15, 21]. Further, although cultural practices, such asspirituality and family closeness, may have benefits for breastcancer survivorship, they also can have a negative impact onhow Asian Americans react to breast cancer and seek help.Asian Americans with breast cancer reported sources ofdistress that included feeling ashamed and stigmatized as wellas a need to engage in self-sacrificing behavior to avoiddisrupting harmony [20, 22]. Some Asian American womenreported a lower rate of seeking professional services for

104 J Cancer Surviv (2014) 8:94–107

psychosocial problems than did Caucasian woman [15], whileother studies reported that Asian American women did utilizesupport group services [17, 19] when available and expressedtheir desire for such resources when asked [39]. Thesefindings challenge the stereotype of limited acceptability ofsupport groups among Asian Americans. It may be that thedisparity is caused by the unavailability of mental health careservices that are culturally competent for these AsianAmericans in need. Further, culturally relevant and faith-based cancer support groups have been adopted in addressingthe needs of breast cancer survivors from other ethnic/racialminority groups, including African and Hispanic Americans[42, 43]. In Australia, Kwok et al. recently reported that aculturally sensitive and linguistically appropriate supportgroup was well received by Chinese Australian breast cancerpatients [44]. They concluded that one of the most crucialelements that improved the support group attendance rate andengagement was the provision of culturally sensitiveinformation corresponding to women's beliefs and norms.Therefore, given that coping strategies vary among culturalgroups, providing culturally and linguistically appropriatesupport groups that are accessible and congruent with thevalues and beliefs of Asian American subgroups is critical.

Limitations in the existing literatures and future directions

We noted significant gaps in the existing literature: first, only asmall number of studies included adequate samples of AsianAmerican subgroups despite the fact that differences in breastcancer survivorship responses and outcomes are presentamong subgroups of Asian American women [15, 16,18–20, 23, 29, 37, 38]. This could be due, in part, to thechallenges of recruiting immigrant women—particularly ifimmigration status serves as a barrier to women's willingnessto participate in research—although this issue was not raisedin any of the studies reviewed. In addition, few studies havespecifically examined the survivorship experiences ofAmerican-born Asian populations. More research is neededto explore potential intragroup differences within the largerAsian American breast cancer population, especially in lightof the projections that Asian Americans will become one ofthe fastest growing and most heterogeneous ethnic groups inthe USA [45]. Second, 16 studies reported on identical oroverlapping samples (five datasets), which may have inflatedthe study findings in the literature. Third, the majority of thestudies were conducted in California, which limits thegeneralizability of the findings to non-California populations.Research on breast cancer survivorship for populations inregions of the USA beyond California, including otherAsian-concentrated states such as New York and New Jerseyis warranted. Fourth, most of the studies used translatedmeasures/questions; however, as individuals from differentAsian American subgroups may interpret questions differently

or have different response patterns that might impact on themeasure's cross-cultural utility [46, 47], we need to assess if theavailable instruments are culturally appropriate and are validmeasures in the Asian American breast cancer population.

There was no published study utilizing a longitudinal designidentified by this review; thus, longitudinal studies are criticallyneeded to assess change in Asian American breast cancersurvivor's experiences and HRQOL over time. This will providevaluable information on how and when to best meet their needsthroughout the cancer trajectory. In addition, research is neededto assess long-term survivorship outcomes among Asians (5 ormore years since the diagnosis of cancer [48]), as almost allstudies in this review included women within 5 years ofdiagnosis. Research on the changes in needs and in HRQOLfollowing cancer diagnosis, during treatment, at treatmentcompletion, and during short-term and long-term survivorshipamong Asian American subgroups is warranted, particularly tounderstand when Asians are at risk for poorer HRQOL and howinterventions might be beneficial. For example, insurance,language, and barrier-to-care issues might be especiallyprevalent during early diagnosis. Fear of recurrence is likely tobe more pertinent later in cancer survivorship.

Further, there is a growing body of work on nutrition andexercise for Caucasian breast cancer populations. Future studiesare needed to investigate how positive dietary change orincreased level of physical activity affects survivorship amongAsian American women with breast cancer. In addition toresearch on individual-level interventions that take into accountthe demographics usually associated with the availability ofcommunity and institutional resources, we also need researchthat focuses on system-level influences to reduce disparities andimprove HRQOL among Asian American survivors. Forexample, more cancer screening and surveillance services needto be accessible to Asian Americans in their community andmore Asian language interpreters need to be available in thehealth care system. Further, to increase participant engagementin research, researchers need to employ culturally relevantapproaches (community-based participatory research) and noveltechnologies (mobile health programs), particularly inintervention studies. In particular, data show that AsianAmericans have a higher rate of Smartphone adoption than allother ethnicities [49]. Use of mobile technologies to facilitatebreast cancer management among Asian American women hasgreat potential to reduce the disease burden and healthdisparities.

Our findings should be interpreted in the context of thelimitations of this review. First, although we searched fourmajor bibliographic databases, we may have overlooked somestudies that were published in smaller journals that were notindexed in traditional sources. Second, given that the AsianAmerican sample size in multi-ethnic studies was relativelysmall, finding results specific to Asian or Asian Americansubgroups was challenging.

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Conclusions

To the best of our knowledge, the present review is among thefirst to synthesize the literature on Asian American breastcancer survivors' experience and outcomes, based on theContextual Model of HRQOL. Although Asian Americanbreast cancer survivorship research is emerging, the lack oflongitudinal and intervention research as well as research onAsian subgroups within a heterogeneous population stronglysuggests future research efforts are needed in these areas.Based on the existing literature, we concluded that AsianAmericans experience disrupted HRQOL following breastcancer diagnosis and treatment, interwoven with their culturaland socio-ecological system, and that intervention studiesfocused on improving cancer survivorship outcomes amongthis ethnic minority group are limited. Some studies in thisreview reported that Asian Americans would like to attendbreast cancer support groups and receive survivorship-relatedinformation about stress management and relaxation if suchresources were accessible to them [17, 39]. Although we havea growing body of literature on the efficacy of psychosocialstress management interventions among samples primarily ofCaucasian women [50, 51], research is critically needed todetermine whether these interventions can be culturallyadopted for Asian Americans or Asian subgroups. Wereported findings focused on specific domains of theContextual Model of HRQOL and suggest potential targetsamenable to intervention development and testing. Evidencesuggests that Asian Americans are at higher risk for poorHRQOL following a breast cancer diagnosis, compared tonon-Hispanic and Caucasian women, and that they havelimited resources. We recognize that there is a critical needto build on the existing research as a means to developculturally tailored and linguistically appropriate interventionsto improve HRQOL and to reduce health disparities amongthis rapidly growing ethnic minority population.

Acknowledgments Kuang-YiWen is currently funded byAHRQ grant1K01HS019001. This work was supported in part by the NIH-NCI'sCommunity Network Program Center, ACCHDC (U54CA153513, PI:Dr. Grace Ma) and NIH P30 CA06927. We are indebted to Alison Petokand Kathy Ireton for their technical and administrative assistance.

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