Original Article

Health Literacy and Cancer Self-Management Behaviors: A

Scoping Review
Janet K. Papadakos, MEd, PhD1,2; Salwa M. Hasan, BSc 3; Jan Barnsley, PhD4; Whitney Berta, MBA, PhD4; Rouhi Fazelzad,
MLS5; Christine J. Papadakos, MA Ed1,2; Meredith E. Giuliani, MBBS, MEd, FRCPC 1,6,7; and Doris Howell, RN, PhD8

BACKGROUND: Increasing demands on health care systems require patients to take on more active roles in their health. Effective
self-management has been linked to improved health outcomes, and evidence shows that effective self-management is linked to
health literacy (HL). HL is an important predictor of successful self-management in other chronic diseases but has had minimal test-
ing in cancer. METHODS: A scoping review was conducted to examine and summarize what is known about the association between
HL and self-management behaviors and health service utilization in the cancer setting. The methodological framework articulated
by Arksey and O’Malley was used and was further refined with the Joanna Briggs Institute methodology. Inclusion criteria included
the following: peer review; publication in English; and adult patients and caregivers of all races, ethnicities, and cultural groups. Use
of a validated instrument to measure HL was required. RESULTS: The search yielded 2414 articles. After the removal of duplicates
and the performance of title scans and abstract reviews, the number was reduced to 44. Of the 44 full-text articles reviewed, 17 met
the inclusion criteria. A number of important self-management behaviors and related outcomes were found to be associated with HL.
These included the uptake of cancer screening, the receipt of prescribed chemotherapy, and a greater risk of postoperative compli-
cations. CONCLUSIONS: This literature review shows that HL is associated with important self-management behaviors in cancer. The
implications of these associations for individuals with inadequate HL and for the health care system are significant. More research is
needed to explore these associations. Cancer 2018;124:4202-4210. © 2018 American Cancer Society.

KEYWORDS: health literacy, health services, neoplasms, self-care, self-management.

INTRODUCTION
Increasing demands on Canada’s health care system require patients to take on more active roles in their health.1 Effective
self-management has been linked to improved health outcomes, and evidence has shown that effective behaviors are
linked to health literacy (HL).2,3 However, the association between HL and cancer self-management behaviors has had
minimal testing in the context of cancer. HL is defined as “the degree to which individuals can obtain, process, and
understand the basic health information and services they need to make appropriate health decisions.”4 This definition is
one among many conceptualizations of HL. Indeed, the measurement of HL is complex because of the multiple defini-
tions and frameworks that have evolved over many years.5 These various elements of HL range from the cognitive skills
required to read6 to the characteristics of patient relations with health care providers or the social support and motiva-
tion or self-management behaviors of the individual.7 The systemic factors that affect HL, such as patient–health care
provider interactions and access to health care services,8 have also been considered among the elements of HL. Currently,
there is no consensus about the definition of HL or about its conceptual dimensions, and this can limit possibilities for
the comparison of findings; however, this review operationalized HL broadly and included studies that used validated
measures of HL.
HL is an important predictor of successful self-management in other chronic diseases, including diabetes,
human immunodeficiency virus, and asthma.9 Inadequate HL is associated with decreased patient engagement,10‒13
which leads to worse self-management and, ultimately, poor health outcomes. It is also associated with preventable
health care resource use,14 including emergency department use15‒19 and hospitalization.16,17,20 Among those with
Corresponding author: Janet K. Papadakos, MEd, PhD, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON M5G 2N2, Canada;
janet.papadakos@uhnresearch.ca
1
Cancer Health Literacy Research Centre, Cancer Education, Princess Margaret Cancer Centre, Toronto, Ontario Canada; 2Patient Education, Cancer Care Ontario,
Toronto, Ontario Canada; 3Undergraduate Medical Education, Faculty of Medicine,  University of Toronto, Toronto, Ontario Canada; 4Institute of Health Policy,
Management, and Evaluation, University of Toronto, Toronto, Ontario Canada; 5Library and Information Services, Princess Margaret Cancer Centre, Toronto, Ontario
Canada; 6Radiation Medicine Program, Princess Margaret Cancer Centre, Toronto, Ontario Canada; 7Department of Radiation Oncology, Faculty of Medicine, University
of Toronto, Toronto, Ontario Canada; 8Division of Psychosocial Oncology and Palliative Care,  Ontario Cancer Institute, Princess Margaret Cancer Centre, Toronto,
Ontario Canada.
DOI: 10.1002/cncr.31733, Received: January 18, 2018; Revised: July 4, 2018; Accepted: July 30, 2018, Published online September 28, 2018 in Wiley Online Library
(wileyonlinelibrary.com)

4202 Cancer   November 1, 2018

 Health Literacy and Cancer Self-Management/Papadakos et al
low HL, a significant number are among individuals
older than 65 years, those with no or elementary-level
education, and those whose household income is in the
lowest quartile.21
Self-management in the context of cancer care is
what a person does, in collaboration with their health
care team, to manage the symptoms, treatment side
effects, physical changes, psychosocial consequences,
and lifestyle changes following a cancer diagnosis and/
or treatment. It includes self-management activities
and behaviors aimed at preventing or reducing health
risks and optimizing health and quality of life.22 It is
important to understand the association between HL
and cancer self-management activities and behaviors
because the majority of the users of the cancer care
system, namely, those aged 65 years or older, are also
most at risk for inadequate HL.23 As such, the cancer
care system may require self-management by patients
least able to do so, and this may result in poor out-
comes for patients and substantial costs to the health
care system.24‒26
A scoping review of the literature was conducted to
examine and summarize what is known about the asso-
ciation between HL and self-management behaviors and
health service utilization in the cancer setting. According
to Arksey and O’Malley, scoping reviews may be con-
ducted as a first step in a larger project, such as a system-
atic review, or they can serve as a standalone initiative
when the topic has not had a comprehensive treatment
in the literature.27,28 The methodological framework
articulated by Arksey and O’Malley was used and was
further refined with the Joanna Briggs Institute method-
ology.29 The literature review research focus was refined
with the PCC mnemonic of the Joanna Briggs Institute
methodology29:
• Population: Adult patients and caregivers of all races and ethnicities.
• Concept: HL and self-management.
• Context: Inpatient or outpatient settings in health care systems and
institutions, various community-based settings, or homes.
MATERIALS AND METHODS
Literature Search Strategy
A comprehensive search was conducted by an informa-
tion specialist in consultation with the research team.
The following electronic databases were searched to
Cancer   November 1, 2018
identify relevant studies, and search terms were custom-
ized for each database: Ovid MEDLINE, EMBASE,
the Cumulative Index to Nursing and Allied Health
Literature, PsycINFO, and the Education Resource
Information Centre. The search was limited to articles
that were available in English and were published be-
tween 1990 and January 2017 because valid instruments
to measure HL were not developed or widely used until
1992.30 In accordance with the Arksey and O’Malley
guidelines,27 articles that met the inclusion criteria were
identified, and reference lists for each publication were
reviewed to determine whether any relevant literature
was missed in the electronic search strategy. The search
for eligible studies included the following terms: health
literacy and computer literacy for information literacy;
cancer*, tumor*, carcin*, neoplasm*, metasta*, and oncolog*
for neoplasms; and self car*, selfcar*, self manag*, and self
monitor* for self-management. In accordance with the
standard approach to conducting scoping reviews, a
quality appraisal was not conducted.27,28
Inclusion and Exclusion Criteria
Observational or experimental studies were included.
The studies had various lengths of time for follow-up,
and there were no restrictions for when the studies or
data collection activities were done. Studies included in
this review were peer-reviewed and published in English.
The study population consisted of adult patients and car-
egivers of all races, ethnicities, and cultural groups. Use
of a validated instrument to measure HL was required.
Included self-management outcomes were required to
align with the definition of self-management behaviors
used in this review: Self-management in the context
of cancer care is what a person does, in collaboration
with their health care team, to manage the symptoms,
treatment side effects, physical changes, psychosocial
consequences, and lifestyle changes following a cancer
diagnosis and/or treatment. Self-management outcomes
were abstracted from data presented in the articles, and
these included psychosocial outcomes (ie, quality of life),
clinical outcomes (ie, chemotherapy symptom manage-
ment and radiation symptom management), and health
service utilization outcomes (ie, emergency department
use and hospitalization). Articles found in the gray lit-
erature were excluded because the focus of this review
was on empirical evidence of associations. Only original
research studies that provided sufficient detail regarding
the methods and results were included.
4203
Original Article
Figure 1.  Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram of the literature review.
Data Abstraction and Management,
Screening, and Selection
The EndNote bibliographic software package was used
to manage all references. Procedures applicable to scop-
ing reviews for study appraisal, as outlined in the Joanna
Briggs Institute methods, were followed.29 Two reviewers
performed the data abstraction and appraisal indepen-
dently with an a priori study protocol. The study proto-
col included the following requirements: the studies were
focused on oncology with adult human subjects and pur-
ported to measure HL and self-management behavior(s)
that aligned with the definition of self-management
behaviors and activities used to introduce this work.
Title scans were conducted, and when the relevance was
4204
difficult to glean from the title, the abstract was retrieved
and reviewed. The full text of all articles that met the
inclusion criteria were reviewed. Discrepancies between
reviewers were resolved by a third reviewer. Data were
extracted from articles and charted.
Studies that met the inclusion criteria were summa-
rized qualitatively, and a narrative summary of the results
was reported according to the Arksey and O’Malley guide-
lines.27 The data extracted from each article included the
following: date of publication, study type, population,
sample size, study objectives, statistical methods used,
HL measure used, self-management behaviors, and main
findings. First, a basic numerical analysis of the studies
included in the review was performed. The numerical
Cancer   November 1, 2018
 TABLE 1.  Characteristics of the Included Studies

Sample
Source Location Period Methods Size Cancer Type Category of Outcome Specific Study Outcome(s)

Cancer  
Rust 2015 42 United States NR Sociodemographic, self-efficacy, and 48 Breast Daily self-management Medication adherence
medication adherence questionnaires behaviors
and 3-item HL assessment
Wilson 2010 48 United States NR Self-care behavior assessments and 70 Prostate Radiation self-care behaviors
REALM
Davis 2014 37 United States 2008-2011 Structured interview and REALM 1189 Breast Health service utilization Mammography uptake
Komenaka 2015 39 United States 2010-2013 Sociodemographic survey; medical 1664 Breast Mammography uptake
record review and NVS

November 1, 2018
Todd 201146 Canada 2009-2010 Sociodemographic survey; self-effi- 103 Colorectal Cancer screening
cacy test and S-TOFHLA
Miller 200740 United States 2004 26-item survey including REALM 50 Colorectal Health service utilization; Cancer screening
Shelton 201145 United States 2008-2009 Structured interview and SAHLSA 400 Colorectal disease knowledge and Cancer screening
beliefs
Busch 2015 34 United States 2003-2006 Structured interview and S-TOFHLA 347 Colorectal Health service utilization; Receipt of prescribed
decision making; health chemotherapy; role in
status decision making about
chemotherapy; cancer stage
at diagnosis
von Wagner 2009 47 United 2008 Interactive information menu; 96 Colorectal Self-efficacy; disease Self-efficacy for cancer
Kingdom knowledge and self-efficacy tests and knowledge and beliefs screening
UK-TOFHLA
Peterson 200741 United States 2004-2005 Structured interview and REALM 99 Colorectal Self-efficacy for cancer
screening
Bezler 2014 33 United States 2014 Structured interview; NVS and 168 Hematologic Self-efficacy; health General self-efficacy;
S-TOFHLA status psychosocial health (anxiety,
depression)
Scarpato 2016 43 United States 2010-2014 Medical record review and BHLS 368 Bladder Health status Minor complications after
surgery for radical cystectomy
35
Cnossen 2016 Netherlands 2013-2014 Study-specific surveys (baseline and 55 Laryngeal Satisfaction Satisfaction with online
after intervention) and Dutch FCCHL self-care education program
Kelly 201138 United States NR Psychosocial questionnaire and 96 Various Disease knowledge and Cancer worry
REALM beliefs
44
Schimdt 2016 Germany 2013 Sociodemographic survey; information 1248 Breast Information needs
needs assessment and HLS-EU-Q16
Armin 2014 32 United States 4-y study Structured interview; S-TOFHLA; 71 Breast Breast self-examination
REALM and SAHLSA knowledge and practices
36
Davis 2012 United States 2008-2011 Structured interview including REALM 1189 Breast Mammography knowledge

Abbreviations: BHLS, Brief Health Literacy Screen; FCCHL, Functional Communicative and Critical Health Literacy Scale; HL, health literacy; HLS-EU-Q16, Measurement of Health Literacy in Europe–
German Short Form; NR, not reported; NVS, Newest Vital Sign; REALM, Rapid Estimate of Adult Literacy in Medicine; SAHLSA, Short Assessment of Health Literacy in Spanish Adults; S-TOFHLA, Short
Test of Functional Health Literacy in Adults; UK-TOFHLA, Test of Functional Health Literacy in Adults–United Kingdom.

4205
Health Literacy and Cancer Self-Management/Papadakos et al
Original Article
analysis of the data included the number of different mea-
sures of HL used and a numerical summary of the study
types. For example, the number of HL measures that were
used in the included studies was calculated. Second, a de-
scriptive template was applied to each study to ensure that
the same attention was paid to each study and the same
questions were asked of each study to limit reviewer bias
and create a transparent review process. We determined
the strength of evidence for an association of HL with
self-management behaviors for each study by exploring
whether the sample size was adequate to power the statis-
tical analysis applied. A flow diagram was created accord-
ing to Preferred Reporting Items for Systematic Reviews
and Meta-Analyses guidelines to demonstrate the review
process and how many studies were identified, were
screened, were eligible, and were included in the review.31
RESULTS
The initial search of the databases yielded 2414 articles.
After the removal of duplicates and the performance of
title scans and reviews of the abstracts of these articles,
the number of eligible articles was reduced to 44 (Fig. 1).
Of the 44 full-text articles reviewed, 17 met the inclusion
criteria by addressing the relation of HL with various self-
management behaviors in cancer32‒48 (Table 1).
Eight different measures of HL were used: the Rapid
Estimate of Adult Literacy in Medicine (REALM; 7 stud-
ies)32,36‒38,40‒42,48; the Test of Functional Health Literacy
in Adults–United Kingdom (UK-TOFHLA; 1 study)47;
the Short Test of Functional Health Literacy in Adults
(S-TOFHLA; 5 studies)32‒34,42,46; the Short Assessment
of Health Literacy in Spanish Adults (2 studies)32,45; the
Measurement of Health Literacy in Europe–German
Short Form (1 study)44; the Functional Communicative
and Critical Health Literacy Scale–Dutch (1 study)35; and
the Brief Health Literacy Screen (1 study).43 Two studies
used more than 1 measure of HL,32,33 and 1 study cre-
ated a hybrid measure from REALM and S-TOFHLA.42
Most studies, such as REALM and the Test of Functional
Health Literacy in Adults (TOFHLA), included HL mea-
sures that primarily focus on the functional definition
of HL. Both REALM and TOFHLA are validated mea-
sures of HL and are commonly used measures of HL.49
However, these measures fail to adequately capture the
multiple dimensions of HL and, as such, cannot provide
meaningful data for the incidence of HL in a population.
For example, measures of HL that focus exclusively on
reading comprehension in the context of health may pro-
vide an underestimation of the prevalence of inadequate
4206
HL. In contrast, only 2 of the studies included HL mea-
sures that incorporate a broader conceptualization of HL
and include both the communicative and interactive di-
mensions of HL.35,44
Of the 17 studies, 14 were observational; 12 of these
studies used a cross-sectional design,33,35,36,38‒41,43‒47 and
2 were longitudinal cohort studies.32,34 Three studies
used experimental designs: 1 study was quasi-experimen-
tal with 3 arms,37 and the other 2 studies were random-
ized controlled trials.42,48
Seven different categories of outcome variables were
examined:
1. Daily self-management behaviors (n = 2): radiation
self-care48 and medication adherence.42
2. Health service utilization (n = 6): mammography,37,39
colorectal cancer screening,40,45,46 and chemotherapy.34
3. Disease knowledge and beliefs (n = 8): breast cancer in-
formation needs,44 breast cancer screening beliefs,32,36
cancer worry,38 and colorectal cancer screening
beliefs.40,41,45,47
4. Health status (n = 3): complications after surgery,43 psy-
chosocial measures (ie, anxiety and depression),33 and
cancer stage at diagnosis.34
5. Self-efficacy (n = 3): colorectal cancer screening self-effi-
cacy41,47 and general self-efficacy.33
6. Decision-making skills (n = 1): chemotherapy.34
7. Satisfaction (n = 1): online self-management education
program.35
8. Next, more specific quantitation is provided, and this is
followed by a summary of select studies.
HL and Daily Self-Management
Two studies explored the association between HL and
daily self-management behaviors, specifically medica-
tion adherence and radiation self-care behaviors.42,48
Rust et al42 found that HL was associated with medica-
tion adherence (β = .582; 95% confidence interval [CI],
28.42-41.73; r = 0.29; t(46) = 2.07; P = .044 [2-tailed]),
with HL contributing 8.5% of the overall variance in the
medication adherence score. However, there were signifi-
cant methodological limitations with their study. First,
the sample size of 48 may have been inadequate to power
a regression analysis, and second, the study team devel-
oped a measure of HL by combining questions from 2
validated measures of HL (REALM and S-TOFHLA).
The unfortunate consequence of this was that the HL
measure had very low internal consistency reliability
(Cronbach’s α = .43).
Cancer   November 1, 2018
 Health Literacy and Cancer Self-Management/Papadakos et al
The second study was another experimental study
that sought to determine whether an education inter-
vention for prostate cancer patients after radiation ther-
apy would improve patient self-care of the side effects of
treatment.48 Wilson et al48 sought to compare patient
self-care behavior scores on the basis of the HL level.
They found that men with inadequate HL in the usu-
al-care group had a significant decrease in self-care from
the time before the intervention to the time after inter-
vention, whereas men in every other group and HL level
showed an improvement from the time before interven-
tion to the time after intervention. The sample size used
for the statistical analysis was very small. Altogether,
more evidence is needed to establish an association be-
tween HL and daily self-management behaviors.
HL and Health Service Utilization
Six studies explored the association between HL and health
service utilization.34,37,39,40,45,46 Two studies explored
whether HL was associated with the uptake of mammog-
raphy.39,50 The study by Davis et al37 (n = 1189) showed
statistically different levels of effectiveness between 3 arms
of education interventions to promote mammography
(P < .0001). The study by Komenaka et al39 (n = 1664)
found that study participants with inadequate HL were
less likely to get a mammogram than their counterparts
with adequate health literacy (odds ratio [OR], 0.27; 95%
CI, 0.19-0.37; P < .001).
Three studies explored the association between HL
and colorectal cancer screening.40,45,46 The findings for
an association were mixed. The study by Todd et al46
(n = 103) found that participants who were current
screeners had higher HL scores than those with lower
HL (P = .042). The study by Miller et al40 (n = 50) found
no effect of HL on colorectal cancer screening, and the
study by Shelton et al45 (n = 400) found an association
between HL and colorectal cancer screening adherence
in a bivariate analysis, but the finding did not hold true
in regression analysis.
The final study in this literature review that ex-
plored the association between HL and health service
utilization focused on the receipt of prescribed chemo-
therapy.34 This study (n = 347) found that having ade-
quate HL increased the chances that patients with stage
III/IV cancer received chemotherapy (OR, 3.29; 95%
CI, 1.23-8.80). The results of the 6 studies together pro-
vide evidence for an association between HL and health
service utilization in the context of cancer.
Cancer   November 1, 2018
HL and Decision Making
Busch et al’s study,34 which explored the association be-
tween HL and the receipt of chemotherapy, also explored
whether the HL level was associated with decision mak-
ing about chemotherapy. They found that the differ-
ences were not statistically significant, but participants
with stage III/IV disease and adequate HL played a more
prominent role in deciding whether to undergo chemo-
therapy than those with inadequate/marginal HL.
HL and Self-Efficacy
Three studies explored the association between HL and
self-efficacy.33,41,47 von Wagner et al47 (n = 96) found
that inadequate HL, which was measured with the
UK-TOFHLA, was associated with less self-efficacy for
colorectal cancer screening (β = .61; 95% CI, .009-.131).
This association was found after they had controlled for
both demographic and information processing variables.
In contrast, Peterson et al41 (n = 99) used REALM to
measure HL, and they found no association between HL
and self-efficacy for colorectal cancer screening. In ad-
dition, different measures of self-efficacy were used for
each study. Perceived feasibility was used as a proxy of
self-efficacy by von Wagner et al, whereas Peterson et
al emphasized the ability to complete cancer screening.
Bezler et al33 (n = 168) found no association between
HL and general self-efficacy in a sample of bone marrow
transplant patients.
HL and Health Status
Three studies explored the association between HL and
health status.33,34,43 The study by Scarpato et al (n = 368)
found that higher HL was associated with decreased odds
of developing minor complications after surgery for radi-
cal cystectomy (OR, 0.90; 95% CI, 0.83-0.97). Busch
et al34 found that having adequate HL did not increase
the odds of presenting with early-stage (I/II) disease ver-
sus late-stage (III/IV) disease (OR, 1.11; 95% CI, 0.68-
1.80). The study by Bezler et al33 (n = 168) found an
association between low HL levels and various measures
of psychosocial health (ie, anxiety and depression).
HL and Satisfaction
A study by Cnossen et al35 (n = 55) explored whether
HL was associated with participant satisfaction with an
online self-care education program supporting early re-
habilitation of patients after total laryngectomy. They
found that satisfaction with the program was statistically
significantly associated with higher HL levels (P = .038).
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Original Article
HL and Disease Knowledge and Beliefs
Eight studies explored the association between HL and
disease knowledge and beliefs.32,36,38,40,41,44,45,47 Kelly
et al38 (n = 96) explored the relation between HL and
cancer worry and found no association. Schmidt et al44
(n = 1248) investigated whether the information needs
of patients with breast cancer differed by HL level. They
found that higher information needs on the following
topics were associated with lower HL: follow-up care
(adjusted OR, 0.297; 95% CI, 0.163-0.542), long-term
side effects (adjusted OR, 0.20; 95% CI, 0.105-0.408),
and inheritability (adjusted OR, 0.479; 95% CI, 0.270-
0.849). Armin et al32 (n = 71) found no significant asso-
ciation between breast self-examination knowledge and
practices among women with different HL levels. Miller
et al40 (n = 50) found that participants with inadequate
HL were less likely than patients with adequate HL to
be able to name or describe any colorectal cancer screen-
ing test (50% vs 96%; P < .01). In a multivariate model,
participants with inadequate HL were 44% less likely to
be knowledgeable of CRC screening (relative risk, 0.56;
P < .01).
Another study (n = 99) that explored the association
between HL and colorectal cancer screening knowledge
found no association in an adjusted analysis between HL
and colorectal cancer screening knowledge.41 The study
by Shelton et al45 (n = 400) also found no association
between HL and colorectal cancer screening knowledge.
The study by von Wagner et al47 explored whether HL
was associated with information seeking about colorectal
cancer screening, and they found in a multivariate anal-
ysis that lower HL was associated with less information
seeking (β = .079; 95% CI, .001-.157).
The study by Davis et al36 explored the differences
in knowledge and beliefs related to mammography be-
tween rural and urban women. They found that rural
participants, who were more likely to have higher HL
(52.5% vs 38.1%; P < .0001), reported stronger positive
beliefs about the benefits of mammography, including
being more likely to strongly agree that having a mam-
mogram would help to find small breast lumps early, in
comparison with their urban counterparts (34.4% vs
6.5%; P < .0001).
The results of these 8 studies together point to a
need for further investigation. Schmidt et al44 found
that participants with inadequate HL had higher in-
formation needs than their counterparts with adequate
HL, and von Wagner et al47 found an association be-
tween HL and information seeking behaviors, which
could suggest that individuals with inadequate HL have
4208
greater information needs because they are less likely
to seek information. However, it could also follow then
that individuals with inadequate HL have less knowl-
edge about disease. These findings have not been cor-
roborated in the literature.
DISCUSSION
There were methodological limitations to some of the
studies. Even those free of these limitations used cross-
sectional designs and/or convenience samples. As such,
the generalizability of the findings from individual stud-
ies is limited, and causality is difficult to establish. Each
of the 3 studies that used an experimental design sought
to evaluate an educational intervention by comparing
outcomes by intervention type and HL level.37,42,48 The
findings from these studies were mixed, but they lend
support to the evidence showing that patient education
can mitigate the effects of inadequate HL.51 Furthermore,
these studies demonstrate an association between HL
and cancer self-management behaviors.
Most studies used measures of HL that measure
only reading comprehension, which composes only part
of more recent conceptualizations of HL. The measure-
ment of HL has received much attention from researchers
over the last decade. The challenge is that many of the
dimensions of HL are difficult to quantify. These parts
include health system–level barriers, health care provider
communication skills, and an individual’s oral literacy
and numeracy skills. Future studies using alternative
measures of HL that incorporate the systemic, individ-
ual, and health care provider factors influencing HL may
provide more nuanced results.
The results show that inadequate HL is associated
with cancer self-management behaviors: less uptake of
cancer screening behaviors,37,39,46 less uptake of pre-
scribed chemotherapy,34 a greater likelihood of post-
operative complications,43 higher information needs,44
and less information seeking behaviors.47 These results
show a clear link between HL and health service utili-
zation. For example, the finding that inadequate HL is
associated with the uptake of cancer screening behav-
iors means that individuals with inadequate HL are at
greater risk for cancer and for presenting to the cancer
system at more advanced stages of disease. However,
more research is needed to explore the associations be-
tween specific cancer self-management and HL to bet-
ter understand the scope of the problem and to focus
attention to these areas.
These results are comparable to the association of
HL with self-management behaviors for patients with
Cancer   November 1, 2018
 Health Literacy and Cancer Self-Management/Papadakos et al
other chronic diseases. In general, patients with inad-
equate HL know significantly less about their disease
than those with adequate HL.2 Similarly, Wilson et al 48
reported that those patients with inadequate HL had less
knowledge of their disease and important lifestyle mod-
ification information. Patients with inadequate HL also
tended to have higher systolic blood pressure and higher
hemoglobin A1c levels, although this difference was not
statistically significant.34
In conclusion, this literature review shows that HL
is associated with important self-management behaviors
in cancer. The implications of these associations for in-
dividuals with inadequate HL and for the health care
system are significant. For example, the finding that
inadequate HL is associated with the uptake of cancer
screening behaviors could mean that individuals with
inadequate HL are at greater risk for cancer and for
presenting to the cancer care system at more advanced
stages of disease. The finding of an association between
HL and the receipt of prescribed chemotherapy could
have implications for patient outcomes and for mortal-
ity. In addition, the finding of an association between
HL and a greater risk of postoperative complications
could indicate worse outcomes for individuals with
inadequate HL and more costly care, including recidi-
vism, to the hospital. More research is needed to explore
these associations.
FUNDING SUPPORT
No specific funding was disclosed.
CONFLICT OF INTEREST DISCLOSURES
The authors made no disclosures.
AUTHOR CONTRIBUTIONS
Janet K. Papadakos: Conceptualization, data curation, formal analysis,
investigation, methodology, project administration, validation, visualiza-
tion, and writing–original draft. Salwa M. Hasan: Data curation, formal
analysis, investigation, validation, visualization, and writing–review and
editing. Jan Barnsley: Conceptualization, methodology, supervision,
and writing–review and editing. Whitney Berta: Conceptualization,
methodology, supervision, and writing–review and editing. Rouhi
Fazelzad: Conceptualization, data curation, and writing–re-
view and editing. Christine J. Papadakos: Conceptualization,
data curation, formal analysis, validation, and writing–review and
editing. Meredith E. Giuliani: Resources, software, validation, and writ-
ing–review and editing. Doris Howell: Conceptualization, methodology,
supervision, and writing–review and editing.
Cancer   November 1, 2018
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