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How can we improve patient education resources for colorectal cancer screening? “...it is important to know that merely giving information about colorectal cancer screening is not enough – the way the information is presented to the patients makes a big difference.” Punya Chittajallu1
Deepak Agrawal*,2
Colorectal cancer (CRC) is the second leading cause of death by cancer in the United States. CRC is one of the easiest cancers to treat when detected early, yet more than a third of patients diagnosed with colon cancer every year die prematurely [1] . CDC estimates that 10,000 additional deaths could be prevented each year if all adults aged ≥50 years receive recommended CRC screening [2] . Currently, the CRC screening rates are estimated to be 65%, which are a long way off from the American Cancer Society’s goal of 75% by 2015. Even this goal appears questionable now. It is interesting to note that the awareness of people for CRC screening lags significantly behind two other cancers with screening programs – breast cancer and cervical cancer. Physicians, professional medical organizations, interest groups and healthcare institutions have made significant efforts to increase CRC screening but they have not had the desired effect. For patients to undergo CRC screening – they should have access to information, they should understand it, feel motivated to take the
desired action and finally the healthcare system should be conducive to patients getting screened (e.g., physicians should be readily available and health insurance should cover the costs). Inadequacies in any or all of these would result in lower CRC screening rates. Giving information and motivating patients to get screened is something that the physicians can and should do. However, it is important to know that merely giving information about CRC screening is not enough – the way the information is presented to the patients makes a big difference. In a randomized controlled study, women at average risk for CRC at an obstetrics/gynecology clinic were given information on CRC in printed form or via a customized website, but only 12% chose to get CRC screening within 4 months [3] . In this review, we will discuss a crucial and often overlooked aspect of CRC screening – the quality of information being given to the patients and how physicians can use the science of health literacy and behavioral medicine to better convince their patients to get screened.
KEYWORDS
• barriers • colonoscopy • colorectal cancer • educational resources • health content • readability • screening • suitability
University of Texas, Dallas, TX, USA Department of Medicine, University of Texas Southwestern Medical Center, Dallas, TX, USA *Author for correspondence:
[email protected] 1 2
10.2217/CRC.14.35 © 2014 Future Medicine Ltd
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“Apart from the website
being readable and suitable, it should also be able to convince the reader to take the necessary action.”
Declining patient–physician interaction While it is well established that recommendation of CRC screening by a physician is a strong determinant whether patients ultimately decide to undergo screening, in reality a good discussion rarely happens. With declining reimbursements, physicians are trying to offset decrease in revenue by seeing more patients within a set time, which precludes having time for a meaningful dialogue with their patient. Many patients feel frustrated that physicians do not spend enough time explaining recommendations or procedures [4] . In a recent survey of patients who were recommended screening colonoscopy during office visits, almost half the patients mentioned that alternative tests to screening colonoscopy were not discussed with them, further confirming that communication between physicians and patients can be improved [5] . The time required to optimally discuss different CRC screening options, patients’ preferences and barriers to inaction often necessitates an extra visit, but Medicare and many other private insurers do not cover the costs of an office visit [6] . These office visits have become rather rare these days. Some practices now use mid-level providers to educate the patients to overcome time and cost limitations. This was exemplified in a recent study where a group of patients who participated in a group endoscopy education class, taught by a gastroenterology nurse practitioner, had a much higher likelihood of having different components of informed consent explained to them [5] . The information void left by the patient–physician interaction is also increasingly being filled by the Internet. Using the internet for healthcare information Use of the Internet for health information has exploded in the last few years. More importantly, the use of Internet is popular even among people with low literacy and immigrants – the populations that lag behind in CRC screening rates. According to a recent survey, six out of ten people rely on the Internet when seeking information about colonoscopy screening [7] . Gastroenterology and cancer societies, governmental organizations and hospitals have responded to this growing need for information by creating their own websites. However, this also has failed to significantly increase the CRC screening rates. Although reasons run the gamut, it is important for healthcare providers
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to recognize the role of website design since they are usually asked to write or approve the medical content. In a recent study by Tian et al., the contents of 12 popular websites on colon cancer screening were analyzed for readability, suitability and health content [8] . Readability describes the ease with which a document can be read and is mathematically determined by difficulty of words, number of different words, sentence length, etc. The typical US adult reads at about a seventh or eighth grade level. As a result, key healthcare groups such as the American Medical Association and the NIH recommend that patient education materials should be written at fourth to sixth grade reading level. None of the websites met the recommended sixth grade maximum readability level. Screening rates are lowest among minority groups, undocumented immigrants and those who have low education levels [9] . Hence, the need to simplify the websites and make them easier to understand is even greater. Suitability measures how easily the text can be understood. A readable text may still not convey the message if the presentation is suboptimal and the writing not succinct. Suitability of reading material analyzes areas such as choice of words, use of graphics, layout and typography, learning stimulation and cultural appropriateness. Of the websites analyzed, 25% were found to be unsuitable, and only one out of 12 was of high quality, making it unlikely that an average reader of these websites understands the contents of the website [8] . Recommendations on simple proven concepts like arranging the contents in subheadings, not using multiple fonts and test colors, keeping enough white space to give the uncluttered looks, use of appropriate illustrations and pictures were not followed. Research has shown that an initial impression of the website often determines how likely a person is going to read and trust the website [10] . Apart from the website being readable and suitable, it should also be able to convince the reader to take the necessary action. For this to happen the writings should address the patients’ beliefs and perceptions. This is the basis of Health Belief Model (HBM) – a psychological model developed in the 1950s to explain and predict health behaviors. The four perceptions mentioned in HBM are: perceived susceptibility; perceived severity; perceived benefits; and perceived barriers. In the study by Tian et al., the
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How can we improve patient education resources for colorectal cancer screening? websites were found to be significantly deficient based on the HBM model. For example, most people perceive their risk of CRC as quite low since they do not have symptoms [7] . Hence it is important to specifically address this misconception. This was not mentioned in any of the websites. More importantly, less than 25% of the websites mentioned that African Americans, obese, smokers and diabetics are at increased risk of getting colon cancer – a population that should be especially targeted for screening. Most websites did mention family history as a risk factor. However, this group is the least likely to need convincing because they are already aware of their risk. Studies have shown that perceived barriers to screening colonoscopy include cost of the test, concern for pain during the procedure, difficulty with drinking the colon prep and embarrassment. The cost of colonoscopy and potential pain during the procedure was discussed only in 25% websites. Only one out of 12 websites discussed potential difficulty of preparing for a colonoscopy and none addressed the concerns about embarrassment [8] . It is important for gastroenterologists and primary care physicians to understand the concepts behind a good website so that they can not only navigate their patients to a good website (CDC, National Cancer Society and American College of Gastroenterology were the higher rated websites), but also improve their own department’s or institution’s websites. Physicians also need to remember that during direct interactions with their patients, merely mentioning the need for CRC screening is not sufficient – they need to assess and discuss the individual patient’s risk of developing CRC, potential benefits of CRC screening and address potential barriers to getting screened in a language that the patients can understand. Other educational resources There are other important educational resources that have been used to increase awareness about CRC screening. The tremendous outreach of television was evident when popular TV personality Katie Couric underwent colonoscopy live on national TV in 2000. Screening colonoscopy rates increased more than 20% in the days and months that followed. This phenomenon, called the ‘Katie Couric effect’, showed that celebrity spokespersons can have a substantial
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impact on motivating people. During their dialogues with their patients, physicians may use examples of celebrities who have promoted CRC screening to persuade select patients (especially choosing a celebrity that the patient can identify with – an athlete, singer, actor, social leader – depending on the patient’s interests and beliefs). Promoting discussions about CRC screening in other settings where target population may be present for another cause is another successful strategy. Many communities have established parenting classes, support groups, focus disease groups or religious gatherings that could be tapped to present information regarding CRC. This is especially important since having a session dedicated solely for CRC screening may not attract enough attention. By using an existing establishment, information can be disseminated more efficiently and effectively. Social media is fast becoming an important source of information for the people. It positively differs from traditional media in its reach, frequency, usability and immediacy. The growth of 50 years and over age group using social media has been staggering over the past 3 years. According to the 2014 Facebook Demographics Report, the biggest population growth for the platform came from the 55+ years age group [7] . In 2012, the American Cancer Society used two successful social media campaigns to raise awareness about CRC screening. The first, Tag2Nag, encouraged Facebook users to tag parents, relatives and friends age 50 and older in a variety of CRC themed images posted on Facebook. The second campaign, Family PLZ! Encouraged 18–45 year olds to learn about their family history of CRC and get screened earlier if needed. ‘Be Seen, Get Screened’ is a CRC awareness campaign that brings together the best posts from different social medias such as Facebook, Instagram, Twitter, Pinterest and YouTube. These user-centered, innovative approaches maximize how people are already using new technologies for communication. It is important for the physicians to be aware of these media and use them appropriately and effectively. It is also physicians’ social responsibility to ensure that the information in the posts is medically appropriate and up to date. In summary, we have discussed above the steps physicians can take to improve information on CRC screening. It is important to
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“Only one out of 12 websites discussed potential difficulty of preparing for a colonoscopy and none addressed the concerns about embarrassment.”
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Editorial Chittajallu & Agrawal deliver the message in a way that is simple to understand, instructions easy to follow and any potential barriers or misconceptions about CRC screening clearly addressed. Individual healthcare providers, hospitals, medical societies and the government – all have a role and a responsibility. If we can all play our part, Center for Disease Control ‘healthy people 2020’ target of screening 70.5% population for CRC by 2020 is within reach. References 1
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Colorectal cancer screening. Cancer Trends Progress Report – 2011/2012 Update. Volume 2013: National Cancer Institute (2013). www.progressreport.cancer.gov Prevalence of Colorectal Cancer Screening Among Adults – Behavioral Risk Factor Surveillance System, United States (2010). www.cdc.gov Weinberg DS, Keenan E, Ruth K et al. A randomized comparison of print and web communication on colorectal cancer screening. JAMA Intern. Med. 173, 122–129 (2013).
Financial & competing interests disclosure The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending or royalties. No writing assistance was utilized in the production of this manuscript.
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Natale-Pereira A, Marks J, Vega M et al. barriers and facilitators for colorectal cancer screening practices in the Latino community: perspectives from community leaders. Cancer Control 15, 157–165 (2008).
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Tian C, Champlin S, Mackert M et al. Readability, suitability, and health content assessment of web-based patient education materials on colorectal cancer screening. Gastrointest. Endosc. 80(2), 284–290 (2014).
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Feld AD. Consent: can it be more informed? Gastrointest. Endosc. 80, 69–70 (2014).
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Doubeni CA, Laiyemo AO, Young AC et al. Primary care, economic barriers to health care, and use of colorectal cancer screening tests among Medicare enrollees over time. Ann. Fam. Med. 8(4), 299–307 (2010).
Institute of Medicine. Care Without Coverage: Too Little, Too Late. National Academy Press, Washington DC, USA (2002).
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Older Adults and Social Media (2010). www.pewinternet.org
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10 Silence E, Briggs P, Fishwick L. Trust and
mistrust of online health sites. Presented at: The 2004 Conference On Human Factors In Computing Systems, CHI 2004. Vienna, Austria, 24–29 April 2004.
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