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Received: 2 September 2016

Accepted: 2 September 2016

DOI 10.1002/pon.4278

EDITORIAL

Tackling inequalities in cancer care and outcomes: psychosocial


mechanisms and targets for change
1 | C A N C E R HE A L T H D I S P A R I T I E S A R E A
GLOBAL PROBLEM AND PRIORITY

has been found, with older patients less likely to be diagnosed at later
stages.8,11 While it is increasingly recognized that psychosocial care is
a key component of highquality, comprehensive cancer care, provi-

Disparities in cancer incidence, outcomes, and prevalence persist glob-

sion varies markedly geographically. Psychosocial care is generally

ally among countries.1,2 While incidence and mortality rates for most

more established and implemented in higherincome countries relative

cancers are falling in many highincome Western countries, the oppo-

to less developed countries and is more likely to be provided in cancer

site is true in numerous lessdeveloped and economically transitioning

centers and university hospitals, which are typically situated in urban

regions. With regard to colorectal cancer, for example, there is a 10

areas than in smaller facilities based in the community.9,12

fold variation in incidence rates worldwide, with high and rapidly

Reducing disparities in cancer care and outcomes is an ongoing

increasing incidence rates in Eastern European countries and Japan,

priority in many countries as well as internationally. For example, cur-

the lowest rates in Africa, Central and South America, and South

rent cancer strategy in England (20152020) aims for a reduction in

Central Asia, and stabilizing or declining rates in the USA, New

the variability of access to optimal diagnosis and treatment and the

Zealand, and Canada.1 Fiveyear relative survival rates for colorectal

resulting inequalities in outcomes (www.cancerresearchuk.org/about

cancer range from approximately 20% in Algeria compared with nearer

us/cancerstrategyinengland), and achieving health equity and elimi-

60% in the USA. Cancer incidence and mortality also vary within and

nating disparities is an overarching goal of the Healthy People 2020

across countries by sociodemographic factors such as gender, age,

initiative in the USA, which sets out a comprehensive agenda for

ethnicity, and socioeconomic status. For example, incidence rates of

improving the health of all Americans in numerous areas including can-

stomach cancer vary by gender, although much more so in some

cer (www.cdc.gov/nchs/healthy_people/hp2020.htm). The Union for

countries than others. Incidence rates per 100 000 are 65.8 in men

International Cancer Control's 2013 World Cancer Declaration calls

compared with 24.2 in women in Japan, for instance, but just 3.3 in

upon government leaders and health policymakers to reduce the

men relative to 2.0 in women in Egypt.1 Across countries, individuals

global cancer burden and promote greater equity (www.uicc.org/

with higher socioeconomic status have been found to have better

worldcancerdeclaration).

35

cancer survival rates than those with lower socioeconomic status.

In Sweden, for instance, individuals with universitylevel education


have been found to have survival rates 40% higher than those of
people with less than 9 years of school education.3

2 | O V E R V I E W O F T H E SP E C I A L I S S U E
CONTENT

Disparities in cancer incidence and mortality are underpinned by


geographical and sociodemographic inequalities at numerous points

This special issue of PsychoOncology focusing on cancer health dispar-

across the cancer continuum: in risk factors for cancer (e.g., smoking

ities was called for and coordinated by members of the Executive

and Helicobacter pylori infection), in cancer screening participation, in

Committee of the British Psychosocial Oncology Society in response to

cancer symptom awareness and timely diagnosis, in cancer treatment

the fact that cancer disparities persist as a global problem and priority,

including psychosocial care, and in longterm morbidities among survi-

and to highlight the contribution that psychosocial oncology research

vors (e.g., depressive symptoms and pain).1,610 Some examples of

can make in helping to tackle these. Over 50 papers were submitted to

these inequalities include the following: Research in Britain, stemming

the call for this issue (the most for any PsychoOncology special issue to

from the National Awareness and Early Diagnosis Initiative in England

date), and 148 reviewers based in 14 different countries have been

launched in 2008, has consistently found lower awareness of cancer

involved in peerreviewing the submissions. Sixteen of the submissions

warning signs and symptoms among minority ethnic groups and lower

are included in this special issue: 3 literature reviews,1315 9 research

socioeconomic status groups.7 Some research studies have found age

papers,1624 and 3 clinical correspondence pieces,2527 as well as a

disparities in stage of cancer at diagnosis, although the nature of these

report from the International Federation of PsychoOncology Societies

disparities varies by cancer type. For some cancers (e.g., cervical),

which documents and highlights the heterogeneity of the federated soci-

increasing age has been found to be associated with more advanced

eties and the global betweencountry differences in the development

stage at diagnosis, whereas for other cancers (e.g., lung), the reverse

and implementation of psychooncology care.28

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Copyright 2016 John Wiley & Sons, Ltd.

wileyonlinelibrary.com/journal/pon

PsychoOncology 2016; 25: 11221126

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EDITORIAL

Collectively, the papers in this special issue use a wide range of

for some cancer types. For example, research in many countries consis-

methodologies and analytic techniques with a diverse range of sam-

tently finds an elevated incidence of prostate cancer among men of

ples, to look at disparities in cancer care and outcomes at several

African descent,34,35 and there is strong evidence of a disproportion-

points on the cancer continuum: from screening,

1618

to symptom

ately high breast cancer mortality rate in African American women,

attribution,19,21 to diagnosis, treatment and care,20,21,25,26 and into

even after accounting for socioeconomic status.36 Nine of the papers

survivorship,

2224,27

in relation to a number of different factors: chiefly

in this issue seek to enhance our understanding of ethnic and cultural

education,16,19,22 ethnicity,14,15,18,22,24,27 and cultural factors (such as

cancer disparities.14,15,17,18,22,2427 For instance, SeymourSmith and

17

) and the

colleagues18 elucidate reasons for the low uptake of digital rectal exam-

presence of comorbid health conditions13,20,22 but also residential

ination screening for prostate cancer among UK AfricanCaribbean

religious beliefs
15

22,24

and English language proficiency


23

25,26

For example, Ruiz and

men. Interviews exploring the men's perceptions of digital rectal

colleagues24 examine differences in smoking, alcohol, and drug use

examination reveal salient fears of the examination stemming from

on the basis of age and ethnicity among adolescent and young adult

cultural homophobic beliefs and in turn a fear of stigma associated with

survivors of childhood cancer, who remain at risk for poor longterm

transgressing cultural norms. In a similar study, but focused on breast

health outcomes.

cancer screening, Padela et al.17 examine how Islamic religious beliefs

location,

age,

and relationship status.

inform American Muslim women's intentions to undergo mamm-

3 | E L U C I D A T I N G P S YC H O S O C I A L
M E D I A T I NG M E C H A N I S M S U N D E RP I N N I N G
CANCER DISPARITIES

ography. This study highlights the influence of religious beliefs on


screening intentions, but moreover, details the complexity of this influence; although some religionrelated beliefs may be barriers to screening (e.g., modesty preservation necessitating gender concordant health
care), others may in fact enhance mammography intention (e.g., notions

3.1

Educational disparities

about duty to God and stewardship of one's body). Both Seymour

Lower educational level, and more broadly lower socioeconomic sta6,29

tus, is associated with lower uptake of cancer screening,

increased

Smith and Padela's papers provide insight into, and inform understanding of, belief systems influencing cancer screening participation among

a more

groups with low uptake. Such knowledge is crucial for developing cul-

and poorer morbidity and mor-

turally sensitive initiatives to reduce ethnic and cultural disparities.

tality outcomes.35,10,31 Three of the papers in this special issue exam-

Perez and collegaues26 report one of the first studies to interview

ine educationbased cancer disparities.16,19,22 Importantly, these

USbased medical interpreters to obtain their perceptions of potential

papers elucidate psychosocial and behavioral factors and processes

mechanisms underlying disparities in the cancer care of patients with

that, to some extent, mediate the link between low educational attain-

limited English proficiency. The study highlights underuse of

ment and poorer preventive care and outcomes. Crucially, as these

interpreters as a principal factor compromising patient care due to

mediators are potentially modifiable, they offer a target for interven-

factors such as privacy concerns and families' desires to interpret or

tions to reduce cancer inequalities. The papers also usefully identify

withhold information, as well as lack of understanding of the US

psychosocial factors which do not appear to underpin educationbased

medical system among patients with limited English proficiency, which

disparities and are thus unpromising targets for intervention. For

linguistic interpreter services alone cannot address.

5,30

likelihood of being diagnosed with certain types of cancer,


4,8

advanced cancer stage at diagnosis,

example, in their paper concerning inequalities in colorectal cancer


screening participation in the UK, Smith et al.16 demonstrate a consis-

3.3

Disparities according to comorbidity status

tent and graded effect of education on perceived emotional and practical barriers to uptake. In particular, beliefs that one would worry more

With a growing aging population in many countries, increasing num-

about colorectal cancer after screening and concerns about tempting

bers of people living with and beyond cancer will also have a diagnosis

fate were strongly negatively associated with education. Interestingly,

of 1 or more other chronic physical, mental, and/or cognitive health

no educational gradient was observed for perceived benefits of

conditions. There is evidence to indicate that patients with cancer with

screening. Marcu and colleagues' paper19 focusing on cancer symptom

comorbidities are more likely to be diagnosed at a later stage

attribution shows that a lower level of education is associated with a

(depending on the type of cancer and the type and severity of comor-

lower likelihood of considering cancer a possible cause for breast can-

bidity),37 are less likely to be offered and to receive curative treat-

cer symptoms. Moreover, they found that this is the case not only for a

ment,37,38 and have poorer survival.5,37,38 However, evidence in this

less wellknown symptom (nipple rash) but also for a very familiar

area is lacking due to, among other things, under and unsystematic

symptom (axillary lump) and that this association persisted even after

recording of comorbidity information in medical records and cancer

adjustment for cancer avoidance.

registries and the fact that patients with comorbidities are often
excluded from randomized controlled clinical trials.37 Three papers in

3.2

Ethnic and cultural disparities

this special issue examine the experiences of patients with cancer with
comorbidities.13,20,22 These include our Editor's Choice paper by Hop-

There is some evidence to show that, in comparison with majority

kinson and colleagues,13 which reports a novel and topical systematic

ethnic groups, some minority ethnic groups are less likely to participate

review on what is currently known about the experience of cancer

in cancer screening.32,33 Also, some ethnic groups have a higher risk of

treatment and its outcomes in adults with dementia. Hopkinson et al.

being diagnosed with some types of cancer and higher mortality rates

find that, compared with other patients with cancer, those with

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EDITORIAL

dementia are diagnosed at a later stage, receive less treatment, are

carefully designed to address the specific psychosocial factors and pro-

more likely to experience treatment complications, and have poorer

cesses contributing to the disadvantaged position of a particular group

survival and that the reasons for these disparities remain to be deter-

are unlikely to succeed in narrowing the inequalities gap. Smith et al.'s

mined. In their paper reporting on a national survey of USbased can-

paper,16 for instance, found that while some perceived barriers to colo-

cer survivors, Stein et al.22 show that among survivors experiencing

rectal cancer screening were strongly graded by education level, per-

ongoing pain, those with physical and/or mental health comorbidities

ceptions of the benefits of screening were not. Therefore, initiatives

had experienced more barriers to pain management at patient, pro-

focused on increasing the perceived benefits of screening may

vider, and system levels. Compared with survivors with no

improve uptake overall but are unlikely to reduce the socioeconomic

comorbidities, those with other health conditions had greater odds of

gap in participation rates. It is possible that illdesigned interventions

reporting, for example, a belief that their pain could not be relieved,

could even exacerbate inequalities, if they were to improve health out-

concerns about addiction and side effects, that their physician did

comes among already advantaged groups, but prove ineffective among

not ask them about their pain, and that their health insurance would

those groups experiencing disparities.39

not cover pain treatment.

4 | PSYCHOSOCIAL INTERVENTIONS TO
REDUCE CANCER DISPARITIES

4.2 | Boost social support and its salubrious effects


among groups experiencing disparities
A large body of literature attests to the importance of social support to
health and wellbeing,40 and some of the papers in this issue under-

Two of the clinical correspondence papers in this special issue report

score the importance of social support to good outcomes across the

pilot study results of interventions to ameliorate cancer disparities.

cancer continuum. For example, Leung et al.23 show that breast cancer

25

LipsonSmith et al.

examine a multifaceted communication inter-

survivors without partners have poorer healthrelated quality of life

vention to increase nonEnglish speaking migrant patients' involve-

than those with partners, and, moreover, demonstrate that this dispar-

ment in, and understanding and recall of, clinical consultations. They

ity is mediated by lower levels of social support among women without

found the intervention proved culturally acceptable, although only

partners. Interventions to reduce inequalities might look to provide or

the audiorecording of consultations component was perceived to be

enhance social support among groups experiencing disparities; this

effective. Two other aspects of the intervention (information sheets

may be particularly important in communities or countries where

and a question prompt list) were unused by many participants,

stigma surrounds cancer and its treatment. In their metasynthesis

suggesting that in future work the intervention should be simplified.

review examining minority ethnic patients' experiences of prostate

Bava et al.27 appraise a parentdirected psychoeducational interven-

cancer, Rivas et al.14 found that the literature indicates that there is a

tion to improve scholastic attainment among survivors of childhood

silencing stigma which discourages men from disclosing their diagno-

leukemia; the intervention is part of the clinical services routinely pro-

sis and thus receiving social support, yet also shows that men who do

vided at their USbased institution, which treats a high proportion of

disclose report the value to wellbeing of social support from close net-

Latino, lower socioeconomic status patients. They report that the

works. Indeed, supportive social networks may help buffer against

intervention is valued by families and shows preliminary feasibility

stigma. In their paper reporting on interviews with breast cancer survi-

and efficacy. Although just 2 of the papers in this special issue report

vors in Uganda, Meacham et al.21 show that stigma impedes women

intervention research, the findings of all the papers have, to varying

from seeking and completing medical treatment, but more importantly,

degrees, implications for intervention development. Considering these

they also show that women who do engage with, and remain in cancer

implications collectively, 3 key themes emerge: That interventions to

care, create pockets of social support which are a key enabling factor.

reduce cancer disparities (a) need to be targeted and socioculturally


tailored to groups experiencing disparities; (b) might, amid other things,
these groups; and (c) need also to focus on enhancing relevant aspects

4.3 | Enhance health professionals' knowledge and


skills

of health professionals' knowledge and skills.

A number of the papers in this issue call for interventions to increase

fruitfully look to boost social support and its salubrious effects among

health professionals' awareness and understanding of relevant psycho-

4.1 | Target and socioculturally tailor initiatives to


groups experiencing disparities

social factors and processes contributing to cancer disparities, so that


they may provide care and services which help to mitigate these disparities. For example, Marcu et al.19 suggest that knowledge of

Several papers in this issue highlight that reducing the inequalities gap

sociodemographic variation in cancer symptom attribution would allow

requires interventions that are targeted and socioculturally tailored to

general practitioners to have a greater sense of patients who may nor-

particular groups most in need. For example, SeymourSmith et al.18

malize their symptoms and thus be at risk of late diagnosis, and Padela

assert that initiatives to increase prostate cancer digital rectal examina-

et al.17 recommend programs that sensitize health care providers to

tion screening among AfricanCaribbean men need to address the fear

the importance of modesty and gender concordance for Muslim

of homophobia in this population, and Padela et al.

17

recommend that

patients. Also, several papers recommend initiatives to enhance vari-

interventions to improve mammography rates among Muslim women

ous different aspects of health professionals' communication skills.

incorporate religiously tailored messages. Interventions which are not

For example, Flynn et al.20 interviewed people with intellectual

1125

EDITORIAL

disabilities and found that they are often excluded in cancer consulta-

recommend that developing successful interventions to improve

tions from conversations and decisions about their care and treatment,

uptake requires partnering with Islamic scholars and Imams in a two

and thus call for interventions to enhance health professionals' patient

way dialogue, and SeymourSmith and colleagues18 have used the

centered skills to enable optimal involvement of patients with intellec-

findings from their interview study to produce a mobile application

tual disabilities in their own care. As Flynn et al. note, theoretically,

(PROCEE, which provides prostate cancer information and evaluates

such skills are generalizable and thus may serve to enhance consulta-

risk) which was designed with key members of the AfricanCaribbean

tions with patients with other comprehension or communication diffi-

community.

culties (such as dementia or limited proficiency in the local language).

To summarize, the excess mortality attributable to socioeconomic


and other inequalities is considerable and reducing disparities in cancer
care and outcomes between and within countries should remain a high

5 | AREAS AND PRIORITIES FOR FUTURE


R E S E A RC H

priority on political and research agendas. The research in this special


issue shows the contribution that psychosocial oncology research can
make towards understanding and tackling disparities across the cancer

The work in this special issue highlights several areas and priorities for

continuum. Psychosocial research can contribute by delineating theoret-

future research. The review papers all identify a number of research

ically modifiable psychological, social, and behavioral factors and pro-

gaps. For instance, Youl and colleagues15 examined variations in

cesses underpinning cancer disparities and developing interventions to

psychosocial outcomes by residential location and indigenous status

mitigate or change these and reduce disparities. However, much remains

in women with breast cancer in Australia and found no research liter-

to be done to realize the potential of psychosocial research, and future

ature examining inequalities by indigenous status, only a few studies

work needs to focus on designing and implementing successful interven-

which directly compared outcomes according to residential location

tions which can effect change and reduce cancer inequalities.

and a lack of studies focusing on women with advanced breast cancer.


Hopkinson and colleagues' review13 highlights the dearth of research

AC KNOW LEDG EME NT S

investigating the supportive care needs and preferences of patients

We would like to thank Maggie Watson and Jimmie Holland for their

with comorbid cancer and dementia; yet, such research is needed to

support and guidance, and the editorial team at Wiley for their input

inform guidelines for the care and management of these patients.

and assistance.

Despite the vital role of family carers in supporting patients and the
adverse impact caregiving can have on carers' own health and

Laura Ashley1

wellbeing, Hopkinson et al.'s review also highlights the absence of

Iain Lawrie2,3

research considering carers and their support needs.

Faculty of Health and Social Sciences, Leeds Beckett University,

Almost all of the papers in this special issue report research

Leeds, UK

conducted in highincome, developed countries. There is a need for


more research examining inequalities in less developed and economi-

2
3

The Pennine Acute Hospitals NHS Trust, Manchester, UK

Faculty of Biology, Medicine and Health, The University of Manchester,

cally transitioning countries, particularly as the burden of cancer shifts

Manchester, UK

toward these countries, where incidence and mortality rates are

Email: L.J.Ashley@leedsbeckett.ac.uk

increasing.1 With an aging population globally, in future years, many


countries will see an increasing prevalence of comorbidity and multi
morbidity among people with cancer. More multimorbidity research
is needed to understand the influence of other cooccurring health
conditions on cancer symptom awareness, helpseeking and diagnosis,
and to inform guidelines for the management and longterm followup
of patients with cancer with other chronic conditions. This will mean
collaborative working outside the singledisease framework which is
currently typical of most specialist health care services, research, and
education. The papers in this issue examine disparities based on
numerous different factors (e.g., age, socioeconomic status, and
ethnicity); yet, many of these have overlap. Future research should
focus on the needs and outcomes of those patients at the intersection
of multiple categories of disadvantage who are likely to experience the
greatest inequalities.
A priority for future research is to develop, test, and implement
interventions to tackle cancer inequalities. Interventions may have a
greater chance of success if they are not only targeted and socioculturally tailored to particular groups experiencing disparities but also
developed in collaboration with them. In their paper on mammography
participation among Muslim women, Padela and collegaues17

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