Master lecture-health-literacy2008
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Master lecture-health-literacy2008
- 1. Low Health Literacy and How to Use the Health Binder North Bay Literacy Council – Literacy and Health Presentation
- 30. It is all of these things that have made them what they are and these are the things that you cannot come to know by hearsay; you can only know them if you have lived them.” Somerset Maughan, The Razor’s Edge (Introduction), 1944.
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- The title is “Health Literacy” written backwards—helps grab the attention of the audience but is NOT a good idea to put this on announcements of the talk because no one stops to figure it out and they don’t know what the topic is and so, do not attend. I begin with thanking my hosts and giving any conflicts of interest I might have. I often put a slide after this one that clearly states all sources of funding that I have for health literacy and if any of them apply to this presentation. Get a sense of two things before you start the talk: Who is your audience? Doctors? Nurses? Other providers? Office staff? Tailor your examples to them. Remember too that doctors feel that this is not a problem for them. They may not attend if you do not give them a “hook”—that hook could be the discussion of how to work with interpreters or legal issues and mandates. That gets them in the room, then you can also tell them about the larger issue of general illiteracy. What are the types of literacy issues faced by the group you are addressing? In other words, in the population they serve, what are the percentages of low educational attainment, Limited English Proficiency, the deaf, and other. As you will see later, I often include a slide that I get from the US Census web site. You will be asked by your hosts often to provide objectives. Here are the ones I use: The audience will be able to: 1.) recognize the scope and implications of health literacy issues, 2.) Identify and implement strategies to enhance patient understanding, 3.) Learn to work with interpreters for the deaf and for LEP patients and 4.) Learn to evaluate health care literature and documents for their level of reading complexity and make them more easily readable. Tell the audience that you would like their constructive feedback and to hear their examples Consider starting with a verbal vignette or a video of an illustrative case.
- This is from a talk that some AMA students gave to other students. It is a nice “ice-breaker” slide. It and the one following can be used to sort of get the attention of the audience. You can use any fact here that might capture their attention about the scope and the hidden nature of the health literacy problem. You might consider a true/false test such as slide # 4 Another option is to give a multiple choice test –sort of a pre-test. The AMA Health Literacy Kit has some examples and you can glean examples from this talk or your own. I do not routinely use this type of slide—partly because it slows me down and partly because I find the one with the backwards writing to have more impact.
- This is the ice breaker used by the AMA Foundation. The answers to all the questions is False. While it is true that the percentage within groups of immigrants, minorities and the poor with low health literacy is high, the majority of low literacy patients are still Caucasian and native born. See the text of slide # 13 for more exact numbers The very fact that so many people can hold jobs and succeed despite low literacy shows that they are in fact very intelligent. This will be discussed at length later. Patients are reluctant to tell you that they do not read or write. See slide #24 for more info. While years of schooling may be the only information you have and you will see that I use it for a surrogate for estimating the scope of the literacy problem in a community, it is not an accurate reflection of literacy. Also, do not forget that health literacy is difficult for many of us despite our years of education.
- It is vital that you define health literacy for your audience: The top bullet is the AMA definition. Health literacy is more complex than general literacy…experience with the health care system, complexity of information, the shorter lengths of stay (with less time for patient education), the increasing amount of self or home health care that is left to the patients and their families—all of these make health care harder to understand. For example: In 1965, there were 650 medications, in 2000, there were over 10,000 Or: In 1965, pts stayed in the hospital 4-6 weeks with an acute MI—now 2-4 days Diabetics spent avg. of 2 hrs/day for 3 weeks in pt. ed. Classes, now they get 0-3 hrs of outpt instruction on care. Literacy often defined as 8 th grade ed or less, BUT you cannot go by the grade level completed…or the ability to read since comprehension is part of the equation. The majority of Medicaid enrollees are at a 5 th grade level. Even fairly sophisticated readers are cowed by medical terminology. Remember that the average first year medical student learns over 30,000 new terms…the equivalent of a new language! National Literacy Act of 1991 definition of Literacy is no longer on the slides I use but if you want to refer to it: “An individual’s ability to read, write and speak in English and compute and solve problems at levels of proficiency necessary to function on the job and in society and to achieve one’s goals and to develop one’s knowledge and potential.” The important word here is functional. The second bullet is the definition arrived at by the ACP Foundation and the AMA and others to further emphasize that this is not just a literacy or numeracy issue but includes familiarity with the health care system and with the health issues of the patient. It is the availability of understandable information, delivered in a comprehensive way and guidance on the choices that must be made. It is interactive and functional. The last bullet is really the crux of the issue—can your patient understand what you are telling them?
- You may want to delete this slide…I use it to outline the types of illiteracy I am going to mention. The first bullet is the usual literacy type we think of—those who have educational deficiencies that impair their ability to read and write AND they often have trouble with spoken words of more than two syllables…! But these patients are not stupid! They can figure out what you mean, but they may miss things while they struggle to interpret. Bullet 2---Even if I leave the slide in, I usually just skip quickly over the sensory/physical illiteracy—this includes the blind, deaf, neurologically impaired, etc. It also applies to many diabetics who are not typically lumped into this category—even if they are well schooled, they may be losing their sight or have other neurological impairments…since this is a large portion of the population, I usually mention them. I also point out that diabetics seem to encode memory in different ways depending on what their blood sugars are…when they learn something at a low blood sugar, they may not remember it at a high level, and vice-versa. Bullet 3—we will return at length to this type of illiteracy. Encourage them to read, “The Spirit Catches You and You Fall Down”, by Anne Fadiman.—a book about a Hmong child with epilepsy that captures the problems of the cultural divide for both the doctor and the patient. Bullet 4—this is the only time I mention this—psychological disease makes it harder for patients to understand since they may interpret things in different ways. Generally, it is important to go even more slowly than usual, take things one step/decision at a time and remember that while they may protest verbally, they are often compliant in actuality. Bullet 5—Computational literacy may or may not parallel reading literacy. In any case, the mix of numbers and words does usually make things harder to understand and much of health literacy combines the two…fractions and percentages are particularly difficult. An example: when we tell our pre-op patients to take 2/3rds of their insulin, we also tell them how many units that translates into…If their normal dose is 18 units, then 2/3rds is 12 units.
- Again, this is a sort of extra slide that can easily be omitted unless the patient population of your audience fits these particular profiles. Hearing—both deafness and presbycusis Neurological—patients s/p stroke, seizure, coma—esp. aphasias Psychological—disclosure more problematic. Legal issues here Cognitive/perception problems may or may not change judgment Must use lots of “exploratory” talk—non-judgmental from docs viewpoint and with care not to impose bias or own perspective. Patients may be negative or passive or have an availability bias Some show magical thinking or psychotic ambivalence—this is most difficult Especially psychotics, but also all psych patients may object vehemently verbally but comply behaviorally. As for any patient—take it slow, simple and structured. Add and repeat over time. Metabolic—COPD with hypercapnia, Hyponatremia, hepatic or renal encephalopathy Endocrine—mostly diabetes but also adrenal, pituitary or thyroid conditions.
- It is easy to get off track and spend a lot of time talking about cultural literacy. See the website for more information on resources and examples of different cultural specifics. Some additional stats: 2000 census says 12% of population is LEP. The US has 2/3rds of the world’s immigrants—85% of those are from Central or S. America. Remember too that not all Hispanics are the same—Puerto Rican does not eat the same food or have the same cultural pieces as a Mexican. Hispanic population growing at 5X the rest, Asian-American at 3X Most immigrants are young (20-30) and live at or below the poverty level. Ethnic interpretations involve “explanatory models” –which are notions about illness that include the etiology, the timing and mode of onset, the pathophysiology, the course of the disease—(esp. the severity and “role” of the course in the whole context of life) and the treatment. Ex: The Spirit Catches You and You Fall Down by Anne Fadiman. Spiritual and religious beliefs may or may not involve different ethnicities. An example of this is the abortion issue, clitoris removal/circumcision or Jehovah’s witnesses **Hispanics often default to “No” on written documents when they do not understand the question. BUT they tend to default to “Yes” when communicating verbally. This is partially a respect issue and the fact that most Hispanics do not participate in their treatment decisions but leave that to the provider. Look for domestic violence, parasites, injuries, pesticide exposure, hepatitis and TB in immigrant populations Take into account their language, their culture and their educational level attained in their native country. Remember there may be psychological trauma on a spectrum from mild bewilderment and dependence in a new culture to post-traumatic stress disorder at the other end.
- These numbers will stun most audiences! Together the total is 46%, $73 Billion dollars and nearly half of your patients. (21%= $30 Billion and 40 million people, the 25% = $43 Billion and 50 million patients.) The $73 Billion dollar figure is from a 1998 study done by the National Academy on an Aging Society in Georgetown. To give it perspective, it is equal to ALL the Medicare payments that year for MD services, dental, home health care, prescription drugs and nursing homes COMBINED. 39% of this comes from Medicare FICA taxes, 17% from employers, Medicaid is 14% (=$10 Billion), Out of pocket is 16% (or $11 billion) and the remaining 14% is written off. You may want to put some of these additional cost figures on a separate slide if you feel that that information will engage your audience. The fourth bullet refers to the fact that lower literacy levels are seen in the South and Northeast in general. However, please caution your audience against making assumptions based on geography. The bibliography has some references to studies done in different parts of the country. The final bullet refers to the fact that literacy issues are often different in urban and rural settings. It is not the incidence that varies as much as it is the type of literacy problem. For example, most immigrants tend to settle in urban areas at first. So you may see more LEP in those settings than in a rural setting. In Appalachia for example, the population is almost 98% caucasian, native born Americans of German-Irish descent. The literacy issue there is one of educational attainment. Again, do not make assumptions based on this division.
- Done in 1992—12 states participated (Pennsylvania was one of them…) 26,000 adults over 16 years old were asked to do diverse reading and computational tasks that reflected daily life activities. The results were extrapolated to the rest of the population. Most accurate of studies done. Repeated in 2003—as the National Assessment of Adult Literacy and sponsored by the National Center for Educational Statistics and the US Dept of Education. Hopefully results will be out soon…expected to be worse. As of January, 2006, some preliminary results from this study have been reported in the press. It appears that indeed, the problem has increased. The first mention of this points to decreased ability to read and do math when students leave school. This statistic therefore deals only with English speaking patients and the results of the LEP population has not been reported yet.
- Everything on this slide is a problem for the illiterate patient PLUS: They take words literally Skip uncommon words Cannot find the key concept May focus on the details but cannot prioritize them. Therefore they have problems with: (there are actual quotes on the website you may use to illustrate these problems…) Also, this material covered on next slide plus more… Navigating from one clinic to another Completing forms Following medication instructions Interactions with providers Appointment dates and finding a new office Coping strategies in general Especially informed consent —more on this later. There is increasing research and interest in the different psychological approaches that some patients take to deal with their lack of understanding. There are two main “personalities”: Some are “Monitors”—they seek info and want to understand. Perceive that there is a risk to not understanding—take advantage of this interest. Others are “Blunters” –they avoid info or are distracted when stressed. Give them only “as needed” info and in small chunks. They will often disagree with you. They are the patient who leaves the office in a huff saying that they have been waiting too long or some similar excuse. I will include in another area of the website, an example of an actual patient that a student reported to us several years ago. Segue: “So, should we care about this issue? Well, if the money isn’t enough of a reason, then look at this information from a Robert Woods Johnson study…..
- (We will talk more about how to handle these issues later, but you may want to mention some strategies now…) Bullets 1 and 2—Important for the staff making the appointment to make sure they know when and where they are to go for their next appointment—especially if it is not the same place where they are right now. Confusion about how to handle an unfamiliar doctor’s staff often leads the patient to “forget” to make appointments with referral sites. Do it for them. Bullet 3— Emphasize this please--- Note here that 50% of ALL patients make medication errors, so this is a difficult issue at best. But the illiterate patient is 5X more likely to make mistakes. 23% are wrong on the # of times to refill an Rx, 33% are wrong on how to take the meds. This is a good place to ask the audience for examples from their own experience. If you have time, try to do that. Almost everyone has a medication example! Examples: Mother who thought “tid” meant take 1/3 of the bottle each time Man who applied a new skin patch every 6 hours but failed to remove the old ones. When this was discovered, he had over 50 patches on him. 66 y.o. patient who arrived in the ER with atrial fibrillation and was sent home on 31 mg of coumadin alternating the next day with 41mg coumadin. No follow-up for two weeks—appeared with melena and syncope—and an INR of 39 and a Hct of 21!—He had taken both doses each day. Mother who was told to give her 2 y.o. 12 and ½ ml of prednisone—equal to 2 and ½ teaspoons. She gave 12 and a half teaspoons… Bullet 4—Patients are less likely to report problems// Bullets 5 and 7—Self explanatory Bullet 6— Very important—will return to this later as well. 60% of patients did not understand their informed consent. (43% did not understand their rights on a Medicaid application.) Bullet 8—Prudential study showed that illiterate patients less likely to breast feed, got fewer vaccines for their children, could not use thermometers and were less likely to use inhalers. When adjust for socio-economics, illiterate patients have poorer health—Literacy is the single best predictor of health status—better than educational level or other demographics. See the slide that the students used at the beginning of the show.
- In case you need to address the health literacy issues of the elderly directly, here is a slide that pulls out the information.
- Bullet 1—It is rather insensitive to just come out and ask, “Do you read?” An office I know hands the patient info form to the patient upside down. I do not like this technique personally. How you handle it depends on the patient and the relationship you have with them. Better to do what my clinic staff have done (without my prompting—they have always done it!) which is to say to ALL patients as they hand them the clipboard, “If you need help with that, feel free to ask us.” Patients will often ask for help from staff easier than from the doctor. Inviting a spouse or other relative into the room also is a subtle way to help with comprehension and memory. Bullet 2—signs to look for plus if they finish too fast… Next is a list of reading ability tests… Bullet 3—If time is short, and you have a lot to cover still, just describe the REALM and the TOFHLA as they are the most widely used. (The 1 st three are word recognition tests, the last 2 have some comprehension testing in them. Neither the REALM or the TOFHLA are good comprehension tests however.) WRAT-3 —Wide Range Achievement Test--3-5 minutes to do and score, costs $95. Nationally standardized, has pre and post test. Uses reading recognition, spelling and math. 1/3 of words are 9 th grade or beyond Words in ascending order of difficulty—patient may give up easily. ** REALM —Rapid Estimate of Adult Literacy in Medicine— preferred test. Doesn’t test comprehension—uses common layman terms for body parts/illnesses Takes 2-3 minutes to give and score; costs $10.00 each Uses 3 lists of 22 words each—asked to read aloud until unable to pronounce several consecutive words—has poor, midrange and high levels. SORT-R —Slosson Oral Reading Test—Revised--Takes 5-10 minutes and costs $32.00 10 lists of 20 core words for each grade level—examiner must choose right test. Lists are long and small font; miss one word and you go back one list. Used with adults and student reading progress assessments ** TOFHLA —Test of Functional Health Literacy in Adults Medically related words—has blanks about every 4-7 words with 4 alternatives given to fill the blanks. All examples are of medical documents: GI instructions, Medicaid applications, prescription labels, hospital forms, etc. Has numeracy items. Takes 22 minutes to give but being shortened! Cloze —named for inventor—not medically oriented. Fill in words that have been deleted—about every 5-7 th deleted. Four choices.
- First and foremost, do NOT ASK “Do you understand?” Patients will always answer yes even if they do not. Bullet 2—Avoid yes or no questions. Ask them what they will do..or how they will explain things to their family or friends. Bullet 3—sometimes called “cued” literacy—Show enough of a picture to be recognizable. Computers may help some, scare others—especially older patients. Consider color coding medications or use suns to indicate taking them in the morning. Use daily events as reminders—e.g. “Take these before breakfast” or “check your sugar before you pick the kids up at school.” At this point show some examples of good and bad pictures or literature. Go by a few of the clinics or pick booklets from your waiting room at random. The next few slides will show you some of the examples we found at UVA. Bullet 4—phone calls that repeat the important points have made a real difference in our clinic Bullet 6—Most of you will say you do not have time to do this. Use the staff wisely—this is something that the doctor may not have enough time to do. But remember that according to a study by Levinson in JAMA in 1997, PCPs who were sued the most averaged 15 minutes per patient and those who were never or rarely sued averaged 18 minutes. A three minute difference.
- There is a national curriculum for Health Education that many states have simply not implemented. By introducing this material even on a local level, you will improve the understanding of health issues for your patients. The ABEL (Adult Basic Education and Literacy) program provide classes in topics that support health literacy—basic literacy and math skills, English language, and High school equivalency. Get sequence of health education class work coordinated better across grade levels and within grade levels…. 1995 Joint Committee on National Health Standards published the National Health Education Standards with the subtitle, Achieving Health Literacy. These standards describe the essential knowledge and skills needed by the end of grades 4, 8 and 11—e.g. what is a milliliter and what is a teaspoon…. Reach out and Read
- We have already discussed examples of pictures and illustrations. Note that to use printed materials, the patient needs at least a 5 th grade education. We will return to this point in a moment. Bullet 2—use short words, short sentences and short paragraphs Also use: bulleted lists Large Font (minimum of 12) with serifs. And use only 2 or 3 fonts at most. Avoid all caps—hard to read Additional hints: Limit info to what patients need to know and DO. Avoid conceptual words :e.g. “normal range”, “incidence”, “condition has stabilized” Avoid category words: e.g. “Ace inhibitor” or “chemotherapeutic agent” Avoid value words like “excessive” or “regularly” Show examples of good and bad printed materials you have found in your office/clinic/hospital. Introduce the SMOG test—give them an example of that as a handout. One can be found on the UVA Health Lit website: http://www.healthsystem.virginia.edu/internet/som-hlc/home.cfm
- Federal guidelines call for all materials for patients to be written at a 5 th grade level or less. Virtually no informed consent is that simple. Even if they are written at that level, good studies show that patients still do not comprehend them well. SMOG —the best and most consistently used test of readability for medical literature Count 10 consecutive sentences at the beginning, 10 in the middle and 10 at the end of the document for a total of 30. Count the polysyllabic words in those 30 sentences Take the square root of the total # of polysyllabic words (or nearest perfect square) , then add 3 to get the grade or reading level. Usually needs 100% comprehension rate Fry’s/FOG —Most widely used in general Very much alike—The FOG uses 100 successive words and uses sentence length and word difference and the Fry uses three passages rather than 100 successive words. Plot on graph from grade 1 through college Underestimates after grade 8 Flesh-Kincaid —is in the grammar check of Microsoft Utilizes word, syllable and sentence length counts to get a score from zero (practically unreadable) to 100 (easy for a literate person) Reads only physical characteristics of text--Xxxx xxx xxxxxx! Also uses a ratio of definite (concrete) words to total number of words Operates on premise that increased abstraction is harder to read.
- Slide from Fern Hauck, M.D. The point is that you cannot separate a patient from their learned culture. They must tell you what is important to them. You should assume nothing. The whole quote is: “I don’t think one can ever really know any but one’s own countrymen. For men and women are not only themselves; they are also the region in which they were born, the city apartment or farm in which they learned to walk, the games they played as children, the old wives’ tales they overheard, the food they ate, the schools they attended, the sports they followed, the poets they read, the god they believed in. It is all of these things that have made them what they are and these are the things that you cannot come to know by hearsay; you can only know them if you have lived them.”
- Thank your audience for their attention and time and the opportunity to work with them. This is usually my last slide. Other slides are included here for you to consider using.