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Drug Fact Sheet Review

October 2002

At the Barcelona AIDS Conference, an international network of treatment advocates met to begin laying groundwork for a treatment preparedness project for resource-poor settings. The goal of treatment preparedness is to increase awareness of the promise and realities of antiretroviral therapy in anticipation of their availability and to educate and mobilize well-informed local advocates. A preliminary stage of this project has begun to collect and evaluate existing educational materials that can be used as written, or as a model for locally produced materials. Several sources of drug fact sheets and treatment information resources are reviewed here.

Methods: An Internet search was made during the week of September 16, 2002, to identify HIV drug fact sheets and other HIV drug information resources. Information about the nucleoside analog 3TC (Epivir, lamivudine) was selected and copied into a text document. This material was evaluated for its discussion of the drug's action and of its side effects. The texts were graded on the criteria of accuracy, currency and clarity. The reading level of each resource's entire 3TC entry was assessed using the Flesch-Kincaid Reading Level utility internal to Microsoft Word. After the specific sections were evaluated, each criterion was graded and an overall score was assigned. Finally, a brief assessment of the source's additional resources was noted.

Results: Treatment information resources available on the Internet can be divided into two categories based on the mode used to address the reader, on the format used to discuss serious side effects and upon the Flesch-Kincaid reading level.

Simple Fact Sheets: Simple language fact sheets tend to address the reader directly (i.e., "You should know ..."). Simple fact sheets also tend to list the most common side effects before warning about rare potential adverse events. The reading level of simple fact sheets ranged from 7.4 to 10.0. These fact sheets are designed to be used by clients who may be learning about HIV treatment for the first time.

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Treatment Information Resources: Treatment information resources tend to discuss information objectively and reference clinical trial evidence. Serious side effects are usually listed first as is typical of information presented to health care professionals. Reading levels are at the top end of the scale (11.0-12.0) These resources can be used by educated or motivated readers, or as a "wholesale" source of information that is ultimately retailed to clients through treatment educators.


Simple Fact Sheets

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Treatment Information in Asian Languages
Asian Community AIDS Services (ACAS)
Ontario HIV Treatment Network
www.acas.org
Last updated: July 2001
Languages: Vietnamese, Chinese, Tagalog, English
Formats: PDF, English text available online
Reading Level: 7.6


ACAS offers a charming fact sheet, if that is possible. The lightness of language and clarity of ideas is refreshing. The notion that HIV drugs can "help you get your health back" is touching and true -- a message not seen elsewhere. The clear descriptions of the types of blood cell deficiencies may not be necessary, but they are edifying. There are a few awkward grammatical passages in the English version that could have been smoothed by a proofreader. I'm told the Chinese translation is formal but clear on the facts.

The tone of this material is non-judgmental and unfailingly polite: "3TC does not kill the virus or cure AIDS. It also does not prevent the transmission of HIV, so please remember to always take precautions if you are having sex (e.g., use latex condoms) or using drugs (e.g., use clean syringes)."

The producers of these fact sheets seem comfortable with a harm minimization approach to treatment education, advising, for example, not to skip a dose just because you want to have a drink. But this fact sheet takes harm reduction a little further: "3TC liquid contains sugar, you should clean your teeth regularly after taking the medication to prevent tooth decay."

Treatment Information in Asian Languages is available as text or in a PDF format as a two-page handout. The design is simple and does not rely on graphics or color. This fact sheet is rivaled by New Mexico AIDS INFOnet for its simple reading-level score but runs about a third longer and packs in more concepts with grace. Top honors.


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New Mexico AIDS InfoNET
www.aidsinfonet.org
Last updated: July 14, 2002
Languages: English, Spanish
Formats: PDF, Word, Text
Reading Level: 7.4


New Mexico AIDS InfoNET's fact sheets are very popular with educators for their simple language and consistent format. But one of the casualties of simple language is loss of precision and accuracy. There are occasional lapses into unexplained concepts here, such as genetic code, or the use of medical terms like hypertension instead of high blood pressure.

One problem with the freshness of InfoNET fact sheets is that they are widely distributed by third parties that may not have the latest version on line. For example, the 3TC fact sheet found on AIDS.org is dated February 7, 2002, and lacks news of the approval of once-a-day dosing found on the main InfoNET site.

The fact sheets are organized by category and reference related fact sheets by number. However, the Web site itself is cluttered and it can sometimes be difficult to locate what you want. All of AIDS InfoNET's many fact sheets are translated into Spanish and can be downloaded in a format ready for the Xerox machine.


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Positive Words
www.positivewords.com
Last Updated: 2001
Languages: English, Spanish
Formats: PDF, Simple Text, Online Text
Reading level: 9.5


This fact sheet manages to educate about broader concepts while informing about 3TC in particular. Readers are advised to tell their doctors about any street drugs used. They are also advised to space their dosing when taking 3TC with ddI. The "why" is given along with "dos" and "don'ts". This is a commercially sponsored site, however editorial independence is protected by a panel of community advisors.

Positive Words offers an abundance of brief, easy to read articles about a wide array of HIV-related topics. If you can manage to navigate the confusing site, you can find some basic drug fact sheets that balance readability with accuracy and brevity.


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JAG Enterprises
www.hivmedicationguide.com/Pamphlets.htm
Last Updated: October 2000
Languages: English, French, Spanish
Formats: PDF
Reading level: 10.0


JAG Enterprises in Ontario, Canada, produces a series of HIV informational pamphlets for patients. These pamphlets have a friendly yet professional tone with enough white space to minimize the intimidation factor. Yet there is a pervasive tone of authority that many users may find disrespectful. For example, women are simply told they must use birth control methods with no discussion of why.

The reading level is fairly high and terms such as inhibit, abdominal and gastrointestinal are not defined within the text. Certain medical terms, such as neutropenia and pancreatitis are explained. The materials were written by a pharmacist (which may explain the tone of authority) and the site is sponsored by several major pharmaceutical makers. The colorful, illustrated fact sheets are preformatted and ready to print. The drugs are pictured in color photographs and there are spaces provided to note a persons's dosage and contact phone numbers.


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AIDSmeds.com
www.aidsmeds.com
Last updated: June 24, 2002
Languages: English
Formats: Online text
Reading level: 9.5


AIDSmeds.com is intended to be a patient-friendly place for people considering or already taking antiretroviral therapy. And for the most part the writing is accessible. But after reading the long list of cautions and warnings here, it would be a wonder if anyone actually had the nerve to get a prescription filled. This is the place to go if you need to find out how to deal with a 3TC overdose (seek emergency medical attention). There is a clear presumption that the reader has unlimited access to medical advice; readers are advised to consult their doctors no less than twenty times on one page. Mixed in with all the cautions is the odd suggestion that, "Lamivudine may also be used for purposes other than those listed in this medication guide." Cake decorations?

It was interesting to compare the 3TC entry to that for a more recently approved drug, tenofovir. The writing style and format is completely different and the obsessive warnings are mostly absent. For the newer drug, efficacy is discussed and the evidence is referenced. Despite some spelling errors, it delivers a far more useful plate of information. This is a commercial site and affects an active magazine-like design that is visually busy and sometimes overwhelming. AIDSmeds.com is a great resource for someone with time to browse everything that is offered and has a 24-hour hotline to a physician.


AIDS Treatment Data Network (ATDN)
www.atdn.org
Last updated: August 22, 2002
Languages: English, Spanish
Formats: Online text
Reading level: 11.5


Older fact sheets often retain artifacts of when they were first written -- when combination antiretroviral therapy was still new: "Many studies have now shown that using lamivudine in combination with at least two other anti-HIV drugs can prevent the virus from getting resistant." The benefits of combination therapy may now be considered dogma; it's better to simply stress the importance of using at least three meds together on a consistent basis; no combination in itself can prevent resistance. The dated tone and inaccuracies aside, grammatical errors, spelling errors and typographical errors will erode a reader's confidence in this material. It's time for a rewrite.


HIV Net Nordic
www.hivnetnordic.org
Last updated: 2000
Languages: Danish, English, Finnish, Icelandic, Norwegian, Swedish
Formats: Online text
Reading level: 12.0


This material seems to have been translated into English and suffers from frequent awkward Nordic sentence structure: "... a real need to be aware of what they are is important for you to know." There seems to be a tautology in saying the drug "is normally very well tolerated by most patients who experience little or no side effects." It's the ones with lots of side effects that have trouble with tolerability. This material is rated at a high literacy level -- for no reason other than the awkwardness of the writing.


GMHC Fact Sheet
Gay Men's Health Crisis
www.gmhc.org
Last updated: May 2000
Languages: English, Spanish
Formats: Online text, paper copies
Reading level: 10.3


GMHC does not currently offer a fact sheet for 3TC. For the purposes of this review, a fact sheet for Viramune was substituted.

These fact sheets are written in a conversational style, but that does not mean they are simple to read and understand. The discussion of side effects is poorly organized, with the risk of rash mentioned first, followed by common, mild effects, then back to liver side effects, which can also be life threatening -- a fact not made clear here. The statement, "Viramune ... has been known to cause hepatitis ..." could easily cause confusion: does Viramune cause hepatitis C? For a drug with potentially far more serious toxicities than 3TC, this lack of clarity is unacceptable. GMHC says a new series of fact sheets is due out soon.


Project Inform
www.projectinform.org
Last updated: July 1997
Formats: PDF, Online text
Languages: English, Spanish
Reading level: 11.7


The material on this site is so old it would be laughable if not for the potential to mislead innocent readers: "... a number of ongoing studies are evaluating triple drug combinations which utilize AZT, 3TC and protease inhibitors (notably indinavir, also known as Crixivan)." Other reports of "ongoing" studies about double nucleosides are alarming. Warnings about lactic acidosis are absent. Accurate for the time when they were written, but not now, these fact sheets belong in a time capsule. They should be taken down until they are rewritten.


Treatment Information Resources

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AIDSmap
www.aidsmap.com
Last updated: July 29, 2002
Languages: English
Formats: Online text
Reading level: 11.0


AIDSmap is a bright light in this constellation of treatment information. It begins with one of the better simple-language explanations of what 3TC does. In addition to listing the usual side effects, AIDSmap gives some advice for how they can be minimized, when they will be worst, and who might have more trouble than others. All efficacy statements are evidence-based and referenced. The site is up-to-the-minute and was the only one reviewed to include a report on the ACTG 384 study presented at the Barcelona International Conference in July. Medical jargon is usually explained in parenthesis, although occasionally terms such as "resistance" are introduced without definition. Overall, the reading level is higher than one would like for a simple fact sheet and the voice sometimes swings between direct address and third-person.

AIDSmap is unique in that it is scalable: the overview can expand into a review of virtually every clinical trial result ever published. Users of this site can go as deep as they like into what is known about 3TC. The site is also optimized for international treatment preparedness workers with the trade names of Indian generic versions of 3TC (Lamivir) listed along with Glaxo's. Best of the bunch.


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amfAR Global Link
www.amfar.org
Last updated: June 2002
Languages: English
Formats: Online text
Reading level: 12.0


This material is not intended for "retail" treatment education but gives a capsule review of all the salient points that a medical professional would want to know about 3TC. Safety issues are highlighted and key references are provided. Although the material has been recently updated and includes results of a tiny study of once-daily dosing, the important results from ACTG 384, presented in Barcelona in July, have not yet been added. Global Link should be useful to creators of treatment education materials as a source of reliable facts. Anyone who'd like to improve their knowledge of HIV treatment, complications and infections can find a wealth of information at Global Link. Hours of good browsing here.


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AIDS Clinical Trial Information Service (ACTIS)
U.S. Dept. of Health and Human Services
www.actis.org
1-800-TRIALS-A
Last updated: July 17, 2002
Languages: English, Spanish
Formats: Online text, telephone
Reading Levels:
Technical View: 12.0
Non-technical View : 11.5


Technical View

Fact sheets for Ph.D.s. A scholarly review of what is known about 3TC right down to the drug's molecular weight and melting point (160°-162° C). Absorb this information and write your own fact sheet.


Non-Technical View

ACTIS (thankfully) boils down all the information contained in the Technical View into a simple one-page summary.

Although this is the non-technical version, the 3TC summary is written at a relatively high reading level, with many clauses and semicolons lengthening the sentences. Side effects are clearly described without jargon, and the less serious effects are put in context of when they are likely to occur. The term enzyme is defined but not necessarily in a way that will be meaningful for understanding its role HIV replication. The discussion of side effects makes the useful point that drugs have effects on the body -- some desirable, some not. It may be that the cost of maintaining accuracy and clarity is the loss of simplicity. Overall, a great source of reliable information.




  
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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
 

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