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Page 1: Supporting Radiation Therapy Patients with Limited Health Literacy

Journal of Medical Imaging and Radiation Sciences

Journal of Medical Imaging and Radiation Sciences xx (2014) 1-6

Journal de l’imagerie médicaleet des sciences de la radiation

www.elsevier.com/locate/jmir

Supporting Radiation Therapy Patients with Limited Health Literacy

Lynn Montgomery, MRT(T), BSc, MHS*

Radiation Medicine Program, The Ottawa Hospital, Ottawa, Ontario, Canada

Abstract: Health literacy is one of the most important determinants ofpatient outcome. Literacy levels are influenced by factors such as formaleducation status, socioeconomic circumstances, age, language, cultural

background, and employment status. Few health professionals are awareof health literacy issues, and even fewer can accurately address them. Thepurpose of this review article was to bring attention to the issue of healthliteracy, to provide information on how to identify patients at risk of

limited health literacy, and to develop communication strategies de-signed to support cancer patients and their families. This article alsoaimed to develop and identify specific tools for radiation therapists and

the radiation medical science community based on literature, evidence,and educational material from nursing and other allied professions.Health care organizations and professionals need to be aware of their

duty to ensure that patients fully comprehend both the complex and sim-ple information presented. Improving comprehension related to healthchoices leads to better decision making by the patient, improves patientoutcomes, reduces hospitalization rates, and cuts health care costs.

R�ESUM�E

La litt�eratie en mati�ere de sant�e est l’un des plus importants

d�eterminants des r�esultats pour le patient. Le niveau de litt�eratie

* Corresponding author: Lynn Montgomery, MRT(T), BSc, MHS, The

Ottawa Hospital, Radiation Medicine Program, 501 Smyth Road, Ottawa,

ON, K1H 8L6, Canada.

E-mail address: [email protected]

1939-8654/$ - see front matter � 2014 Elsevier Inc. All rights reserved.

http://dx.doi.org/10.1016/j.jmir.2014.07.013

est influenc�e par des facteurs comme l’�education formelle, la condi-tion socio�economique, l’age, la langue, le contexte culturel et le statutd’emploi. Peu de professionnels de la sant�e sont conscients des enjeuxde litt�eratie en mati�ere de sant�e et moins encore peuvent les aborder

avec exactitude. Le but de cet article est sensibiliser les lecteurs �a laquestion de la litt�eratie en mati�ere de sant�e, de fournir de l’informa-tion sur la facon de reconnaıtre les patients susceptible d’etre �a risqueen mati�ere de litt�eratie et de d�evelopper des strat�egies de communi-cation visant �a soutenir les patients atteints de cancer et leur famille.L’article vise �egalement �a d�evelopper et �a recenser des outils

sp�ecifiques pour les technologues en radio-oncologie et lacommunaut�e des sciences de la radiation m�edicale �a partir de ladocumentation scientifique, des donn�ees probantes et du mat�erielde formation des sciences infirmi�eres et autres professions connexes.Les organisations et les professionnels de la sant�e doivent etre consci-ents qu’ils ont le devoir de faire en sorte que les patients compren-nent bien les renseignements complexes qui leur sont pr�esent�es,autant que les renseignements simples. L’am�elioration de lacompr�ehension des choix en mati�ere de sant�e conduit �a une meilleureprise de d�ecision par le patient, �a l’am�elioration des r�esultats pour lepatient, �a une r�eduction des taux d’hospitalisation et �a une r�eductiondes couts de la sant�e.

Keywords: education; health literacy; literacy strategies; medical radiation science; radiographer

Introduction

According to the Canadian Literacy and Learning Network,55% of people over the age of 16 years and 88% over theage of 65 possess inadequate literacy skills [1]. Low literacyskills not only affect personal economic and social circum-stances but also have a profound impact on one’s ability tounderstand health care needs, options, and possible conse-quences related to health care choices [2]. The World HealthOrganization highlighted the concept of health literacy in the1990s, and Canada responded by creating an Expert Panel on

Health Literacy [3]. Several health literacy definitions havesince been established, but the panel suggests health literacyis ‘‘the ability to access, understand, evaluate and communi-cate information as a way to promote, maintain and improvehealth in a variety of settings across the life-course’’ [3]. TheWorld Health Organization and the panel explain that peopleshould be able to comprehend, analyze, and apply health in-formation to make the best possible decision for their health[4]. Health literacy is linked to outcomes and quality of care,and, thus, individuals should be concerned about this issue.Poor health literacy increases the likelihood of medical errors,difficulties interpreting labels and instructions, and the use ofemergency services. It also ‘‘lower[s] use of preventatives suchas mammography and vaccination and [results in] pooreroverall health status and higher risk of mortality rates for

Page 2: Supporting Radiation Therapy Patients with Limited Health Literacy

seniors’’ [5]. Health literacy levels are important for care facil-ities and the government because reduced literacy increaseshospitalization rates and health care costs [1, 3, 5].

Literacy Levels and Awareness

The notion of literacy is not as straightforward as the abil-ity or inability to read and write. There are many differentlevels of literacy skills [3]. An International Adult LiteracySurvey reported that 48% of Canadians have either low orvery low literacy skills, which means that essentially half ofpatients in the current medical system have difficulty under-standing the information presented [3]. Even more surprising,a survey of health care providers and policy makers concludedthat the term ‘‘health literacy’’ is rarely used in the workplaceand that there is a low level of awareness and understanding ofhow literacy level affects a patient’s health [3, 6]. The Cana-dian Literacy and Learning Network concluded that ‘‘healthcare experts . . . have, for the most part, ignored a huge prob-lem that may be too obvious to notice: [one] must be func-tionally literate to navigate the health system’’ [1]. Healthadministrators, policy makers, health care providers, and thegeneral public must become aware of the magnitude of liter-acy issues and their influence on outcomes [3]. The ability tounderstand health information and how to best use thatinformation for decision making is essential to help improvequality of life.

The capacity to effectively take control and manage one’shealth needs is influenced by age, sex, native language,cultural background, formal education, employment status,and socioeconomic environment [1–3]. Stress and anxietycan also affect one’s ability to understand health information[7]. Literacy levels influence many aspects of daily life andare in fact more strongly linked to mortality rates than an in-dividual’s income or education status [3]. People withlimited literacy skills not only have poorer health outcomes,but they also engage in fewer health-promoting behaviorsand lifestyle, participate less in screening programs, andgenerally report themselves as being in poorer health[3–5]. Although many Canadians are able to function dayto day with limited health literacy, they often do not havethe capacity to comprehend multiple linked sentences or

Table 1

Literature Search Results

Search database Keywords Pu

CINAL PLUS Medical radiation science AND health literacy 199

Nursing AND health literacy 199

PubMed (NML) Medical radiation science AND health literacy 199

Nursing AND health literacy 199

Academic Search Complete Medical radiation science AND health literacy 199

Nursing AND health literacy 199

Allied health AND health literacy 199

Proquest Nursing & Allied

Health Source

Medical radiation science AND health literacy 199

NA, not applicable.

2 L. Montgomery/Journal of Medical Imaging

grasp complex topics, such as the risk and benefits of treat-ment options and medications [1, 2].

Well-educated health care providers may not always beable to identify or recognize that certain patients are notable to comprehend and follow instructions even thoughthey are literate [3]. What is often referred to as ‘‘lack ofcompliance’’ by health providers is more likely that thepatient did not understand the complicated verbal or writteninstructions provided. The shame and fear associated with lowliteracy, especially for foreign language patients, results infewer questions to doctors and pharmacists [7]. Becausemost people do not disclose their limited literacy due toshame, fear, and embarrassment, awareness about this issueis critical. Additionally, health care providers have a legaland professional obligation to ensure patients fully compre-hend the information provided [2, 3, 6].

Implications for Radiation Therapists

Effective strategies to reduce current communication gapsfor patients and families with limited literacy capabilities havebeen established by nursing and other allied health groups[3, 5, 7, 8, 10]. The medical radiation science communityand related journals lack published health literacy information.Consequently, there is a necessity to provide specific informa-tion about how to address and alleviate the issue of healthliteracy. Radiation therapists (RTs) educate patients regardinga range of sensitive and timely topics including the side effectsof radiation therapy treatments, medications, skin care, nutri-tional information, exercise, and other psychological issues. Itis imperative that patients and their families genuinely under-stand instructions and advice being provided by RTs in orderto reduce acute and chronic side effects and improve the overallpatient experience.

Implications for Organization

Although the primary focus of this article is to highlightimplications for RTs and provide appropriate interventionstrategies, the implications of health literacy on health careorganizations cannot be ignored. For example, organizationsinfluence the amount of time RTs are allocated to spendwith patients to assess literacy levels, which subsequently

blication Date Results Refined Search Results

7–present 1 NA NA

7–present literacy 3,183 Allied health AND health literacy 838

Keywords in abstract 3

7–present 2 NA NA

7–present 289 Keyword in abstract

7–present 4 NA NA

7–present 2,813 Keyword in abstract 52

7–present Keywords in abstract 8

7–present 436 Keywords in abstract 284

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directly impacts the quality of patient education. If organiza-tions would consistently allocate additional time for educationand to accommodate patients with limited literacy, fewer mis-communications would occur. Research has shown that poorhealth literacy leads to medication errors, increased hospitali-zation, greater use of emergency services, reduced usage ofpreventative services and inferior overall health [5, 8]. All ofthese factors contribute to higher overall medical costs.

Methodology

The search strategy used for this review included theCINAHL/CINAHL PLUS, PubMed, Academic Search Com-plete, and Proquest Nursing & Allied Sources databases. Key-words used alone and in combination in this search includedmedical radiation sciences, health literacy, education, nursing,and allied health professionals. To ensure the reviewed litera-ture is relatively recent, the search was limited to English jour-nal articles published after 1997. There was no restriction onthe origin of the publication.

Search results of the databases using ‘‘medical radiationsciences’’ in combination with ‘‘health literacy’’ yielded fewresults. Consequently, the search was then expanded toinclude the words ‘‘allied health professionals’’ and ‘‘nursing.’’This expanded search produced hundreds of articles. A furtherrefined search of ‘‘nursing,’’ ‘‘allied health,’’ and ‘‘health liter-ature’’ also produced numerous results, but when search termswere limited to the abstract, more manageable results wereproduced. Results of the research have been summarized inTable 1. Selected articles were then reviewed individually todetermine content suitability. A limitation of this reviewwould be that not every result was evaluated because therewere over 1,000 results.

An additional search using the Internet (Google) was per-formed using the same keywords used in the expanded data-base search. This search produced recent reports published byvarious established government agencies.

Discussion

Screening and Assessment Tools

Table 3

Strategies for Health Providers to Address Limited Health Literacy [5, 9, 10,

13, 14]

Use plain language and simple sentences

Avoid jargon

Speak slowly

In order to tailor communication strategies, RTs should bereminded that seniors, immigrants, and the unemployed arethe three highest at-risk groups experiencing low literacy rates[6]. All health providers should be vigilant and not assume‘‘white collar’’ patients, who may be functionally literate,have adequate health literacy skills [3]. Literacy cannot bedetermined by ‘‘looking’’ at someone, and caution should

Table 2

Indications of Limited Health Literacy [3, 5, 9, 10]

Incomplete or inaccurate forms

Inability to explain purpose of treatment or disease type/stage

Frequently missed appointment times

Poor eye contact if asked to read written material

Defensive behavior (forgot reading glasses)

L. Montgomery/Journal of Medical Imaging

be used for all patients [5]. Table 2 shows some ‘‘red flags’’of limited health literacy. When RTs are able to recognizethe common signs of limited health literacy and understandwhat additional actions need to be taken, patients will benefitbecause they will receive more appropriate and tailored guid-ance. Organizations could help staff identify the most at-riskgroup by making information about employment and immi-gration status available in their charts, as well as defining whatage should be considered as at-risk for seniors.

Numeracy issues and low literacy particularly affect older pa-tients because literacy declines with age, and there are fewer peo-ple that attain higher levels of formal education in this age group[3, 5, 11]. For example, literature shows that older women withbreast cancer are often undertreated and ‘‘rely heavily on theircancer care physician for information about their cancer andtreatment options’’ [11]. On the other hand, some cancerpatients with limited literacy overestimate their survival ratesand, consequently, pursue more aggressive treatment options[11]. Therefore, identifying patients at risk of limited literacywill improve the likelihood of better-informed decisions. Conse-quently, when patients are involved in the decision-makingprocess, it often generates a sense of empowerment and improvestreatment and patient satisfaction [11, 12].

RT Intervention Strategies for Patients with LimitedHealth Literacy

Improving communication is a ‘low-cost, high-impactbehavior change’’ that can significantly help overcome healthliteracy obstacles during the communication and educationprocess [11]. Specific strategies to accommodate high-riskpatient populations should be developed in order to ensurethat health providers deliver appropriate messages. Supplyingdirected readings, becoming familiar with adult educationprograms, and distributing lists of local agencies are just afew ways to help. The weeks of daily contact RTs have withpatients create a unique opportunity to present and discusstimely and patient-focused information. Table 3 provides alist of common communication strategies for health providers.

Some health care providers, physicians in particular, willask a patient if they understood all of the informationpresented as they stand up and reach for the door [12].

Limit key points to three during each interaction

Use multiple modalities (pictures, video, and computer presentations)

Minimize anatomic and physiological information

Use open-ended questions

Use ‘‘teach back’’ method to assess comprehension

Use active voice, soft tone, be respectful

Use interpreters when needed

Create safe, shame- and blame-free environment to assess literacy level

Positive body language

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Table 4

Developing Facilitated Client Learning Based on the LEARNS Model [5]

Model Keys to facilitating client centered learning. Questions for RTs to ask to encourage professional growth

L Listen – to patient needs How can I improve my listening skills?

E Establish – relationship with patient/family How can I engage and build a partnership relationship with my patient?

A Adopt – intentional approach to every learning encounter

(negotiated, tailored, planned, structured, multimodal/media)

How can I shift to a more formal, structured, and interactive approach to

facilitated learning?

R Reinforce – health literacy How can I communicate in a way that my patient will understand?

N Name – new knowledge via teach back How do I incorporate intentional ‘‘checking for understanding’’ in my practice?

S Strengthen – self-management via links to community resources How does my practice promote or strengthen my patient’s capacity for

self-management?

This type of action does not create an environment that en-courages questions. Several health literacy reports concludethat urging patients to ask questions is an extremely importantway to reduce confusion [3, 5, 6]. Talking with patients in acomfortable atmosphere and making sure they know exactlywhat steps, if any, to take after meeting promote learning.Simply altering the way health providers ask questions isalso an excellent way to ensure adequate comprehension.For example, instead of ‘‘Do you have any questions?’’ ask,‘‘What questions to you have for me?’’ [5, 11, 12]. Thistype of open-ended questioning demonstrates responsivenessand compassion and welcomes patient concerns.

Another leading intervention strategy accepted and used,especially in nursing, is the ‘‘teach back’’ method [5, 10,12, 15]. Specifically, when a patient can explain or ‘‘teachback’’ the most critical information provided, it is a goodindication they understood. Health care providers shouldsay, ‘‘Tell me what we talked about’’ or ‘‘When you gohome today, what are you going to tell your partner aboutyour treatment?’’ If there is still some information missingafter the patient ‘‘teaches back’’ what they understood, RTsshould not reiterate the exact same information. Alternativeeducational approaches or modalities should be used, and pa-tient comprehension should be re-evaluated. Repeating thisprocess until the patient understands the most critical mes-sages is best practice [5]. Although some communication stra-tegies may appear straightforward to use, research has shownthat effective communication ‘‘strategies often require practiceand the participation and training of an interdisciplinaryteam, as well as feedback from patients’’ [12].

Recently, the Registered Nurses’ Association of Ontariocreated a comprehensive document titled Facilitating ClientCentered Learning [5]. This document describes, in excellentdetail, essential background information and implications ofhealth literacy. It also makes specific practice, educational,organizational, and policy recommendations as well as imple-mentation strategies for nurses. Using this model would be anexcellent starting point for any allied profession, includingradiation therapy. One of the key components of the reportdescribes how to ‘‘facilitate client-centered learning’’ (ie,creating a ‘‘safe, shame- and blame-free’’ environment thathelps promote a positive relationship between a patientand nurse [or RT]). This environment will also encourage‘‘self-efficacy and decision making’’ [5]. The report also

4 L. Montgomery/Journal of Medical Imaging

recommends using a universal precaution approach to healthliteracy. Similar to the idea of using universal infectious dis-ease precautions when interacting with patients, the reportrecommends that nurses assume that all patients have limitedhealth literacy and proceed with caution [5]. Organizationsshould use this assumption when developing health literacypolicy and education guidelines.

The report also established an educational recommendationcalled the LEARNS (Listen, Establish, Adopt, Reinforce,Name, and Strengthen) method. This technique describes thenursing process that best promotes a positive learning andeducational experience. Table 4, adapted directly from theRegistered Nurses’ Association of Ontario report, describeshow to best facilitate client-centered learning. Table 4 also listscorresponding questions for RTs to ask themselves to help pro-mote professional growth and encourage the recommendedpractices. The medical radiation science community shouldconsider adopting a similar educational method to help addresshealth literacy needs.

Organizational Intervention Strategies for Patients withLimited Health Literacy

Printed Material and Information

Because health literate and well-educated professionalscreate health information and medical forms, they may notbe aware of the limitations of their work [2, 3]. Websites,signage, and forms should be clear, easy to follow, and eval-uated by actual patients in addition to other professionals[3, 5, 6]. Evaluating the effectiveness of all health literacyprograms, documentation and staff would help improveawareness and create a concerned and humble atmosphere.Organizations should review recommendations and confirm,not assume, documentation is being understood by individ-uals most at risk [5, 10]. It is critical to ensure that staff isable to identify patients at risk of low literacy levels andknow how to best manage each situation. For example, orga-nizations should confirm that enough staff members aretrained and available to efficiently help patients, withoutembarrassing them, to complete the necessary forms andmove on to the next treatment step. Potential strategies toreview educational material could include focus groups, pilotstudy, appraisal of related literature, and inclusion ofpatients on committees.

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Education: Current and Future

Staff should attend frequent continuing education ses-sions about how education and communication strengthenpatient comprehension [3, 5]. In addition, using casestudies, for example, to show how to effectively manage spe-cific cultural sensitivities is a simple way to offer a range ofpossible solutions to staff. Providing published articles, con-ducting public campaigns to raise awareness, and organizingpresentations from literacy experts will increase health liter-acy awareness [3].

Another valuable method to improve health literacyknowledge and communication strategies is to compel aca-demic institutions and teaching hospitals to dedicate addi-tional time in their curriculum to adequately addresscommunication and literacy issues. Learning objectivesshould include definitions of health literacy, the importanceof the role that health providers play in aiding people withlimited literacy skills, and how to use interactive teachingtools [10]. Specifically, learning to adapt communicationstrategies for patients with limited literacy, role playing,how to distinguish between simple and complex readingmaterials, how to determine if education material is at anappropriate level for patients, and how to be aware ofspecific cultural sensitivities would be useful learninggoals [16].

Recommendations for RTs

Increasing awareness and consequences of low health liter-acy to RTs and cancer programs is essential. Taking the neces-sary steps to ensure improved patient comprehension willrequire time and effort through practice, education, and pol-icy change. Although the information provided by variouspublications and reports is an ideal starting point, there isan opportunity and, more importantly, a demand to createspecific guidelines for RTs. Developing effective health liter-acy assessment and communication skills is vital to improveoverall patient comprehension.

Even when RTs are satisfied with their communicationstrategies, many experienced RTs have likely encounteredpatients who have, for example, misunderstood skin care orhygiene instructions, medication instructions, or anticipatedside effects. These are examples of potential signs of limitedhealth literacy that are often mistaken for the patient ‘‘notlistening,’’ and health providers should not ignore or assumethese were simple miscommunications [2, 3, 5, 10]. To createspecific guidelines about health literacy, RT programs andRTs must determine the most common radiation therapyhealth literacy limitations and address them with specificrecommendations and practice changes. For example, if anRT advises a patient to ‘‘increase/decrease fiber intake,’’ thepatient may nod or verbally agree, and the RT may assumethat the patients fully understood the implications of the in-structions. The patient, however, may be thinking that theonly way to achieve this is to eat whole wheat bread. Moreprecise and concrete examples of which foods to eat and in

L. Montgomery/Journal of Medical Imaging

what amount should be provided to all patients becauseRTs have no way of recognizing which patients know exactlywhich high-fiber foods to eat. The only way to determine ifthese examples, and other issues, are common misconceptionsis to formally evaluate patient knowledge. Therefore, addi-tional investigation and research about common misconcep-tions would be valuable.

Immediate action can be taken through RT self-reflectionand systemic evaluation of health literacy issues in radiationtherapy. For example, RTs can evaluate the effectiveness oftheir individual communication strategies by asking someimportant questions such as (1) How often do patients misun-derstand treatment or care instructions I provide? (2) Was themiscommunication a simple misunderstanding or compre-hension issue? (3) How can I determine this? (4) How can Ialter my communication strategy to be more effective? (5)How can I access additional information if needed? and (6)Is my organization supporting me and my patient enough?The national RT community could ask the following ques-tions to help eliminate the current gap in health literacy infor-mation for radiation therapy patients: (1) How can we betteridentify radiation therapy patients at risk of low literacy? (2)Who should identify patients at risk of limited literacy? (3)How can this information be transmitted and shared betweenprograms? (4) How do we ensure physicians and staff usesimilar communication strategies? and (5) How can we eval-uate our current communication strategies and written mate-rial? Collaboration within the RT community would expeditethis process.

Recommendations for Organizations

Use of Screening Tools

There are tools to measure health literacy including theRapid Estimate for Adult Literacy in Medicine and Test ofFunctional Health Literacy in Adults [10, 11]. These toolsare generally not used to screen individual patients becauseit may contribute to additional shame and embarrassment[11]. However, there are opposing arguments about the valueand ethics of screening groups or individual patients usingtests such as the Rapid Estimate for Adult Literacy in Medi-cine. Some researchers argue that knowing the literacy levelof an individual patient allows physicians and all health careproviders to specifically tailor communication strategies andprovide the correct level of written material [13]. In addition,some argue that there is such a strong link between healthliteracy and outcomes that it would be irresponsible not todetermine literacy level, akin to not taking a patient’s weightor blood pressure. Others argue that this is a time-consumingpractice that often humiliates the patient, especially if eachsector of the health care system repeats the same test. In sum-mary, health care organizations need to determine if and howthey will evaluate literacy levels and how to transmit thatinformation to the entire health care team. Limiting the num-ber of times a patient is subjected to a literacy test should bean objective.

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Education

A Canadian Public Health Association survey of 700 healthprofessionals and policy makers discovered that 30% of thosesurveyed were completely unaware of the term health literacy,and only 7% of organizations had formal policies in place onhealth literacy [3]. Direct action to, at a minimum, communi-cate health literacy statistics to at-risk populations and implica-tions could be done via a monthly newsletter created by aneducation coordinator or professional practice committee [5].Disseminating the various communication strategies and edu-cation would also require coordination from interdisciplinaryteams, programs, health organizations, and provincial and na-tional associations to be most effective. Although implementingappropriate education and communication techniques willrequire additional resources, time, and commitment from staff,it will ultimately result in better-informed patients and improvequality of care and outcomes.

Conclusion

The increasing aging population makes health literacy aneven more important issue for RTs because there will be anincrease in the number of patients treated with radiation inthe next few decades. Proper literacy assessment skills andeffective communication strategies are required to minimizethe occurrence of miscommunications and misunderstand-ings. When health providers appreciate the shame associatedwith not completely understanding information or the abilityto adhere to instructions, a more constructive and helpfulrelationship will emerge. Each health care organization andindividual must assess if they are taking the appropriate actionto combat health literacy issues. Effective communicationstrategies require practice, planning, structure, and criticalthinking skills. Furthermore, RTs must collaborate andcompile a list of common ‘‘misunderstandings’’ or ‘‘miscon-ceptions’’ that radiation therapy patients experience anddevelop appropriate responses to reduce literacy challenges.Frequent and unbiased assessment and the evaluation of stra-tegies, documentation, staff, and patients are essential tominimize health literacy issues.

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