The Official Patient's Sourcebook on Lupus (3 page)

contacting groups that support your condition, visiting your local

library, and searching on the Internet, you can find good information

to help guide your treatment decisions. Some information may be

hard to find—especially if you don’t know where to look.
2

As the AHRQ mentions, finding the right information is not an obvious task.

Though many physicians and public officials had thought that the

emergence of the Internet would do much to assist patients in obtaining

reliable information, in March 2001 the National Institutes of Health issued

the following warning:

The number of Web sites offering health-related resources grows

every day. Many sites provide valuable information, while others may

have information that is unreliable or
misleading.3

1 Quotation from
http://www.drkoop.com
.

2 The Agency for Healthcare Research and Quality (AHRQ):

http://www.ahcpr.gov/consumer/diaginfo.htm
.

3 From the NIH, National Cancer Institute (NCI):

http://cancertrials.nci.nih.gov/beyond/evaluating.html
.

2

Lupus Nephritis

Since the late 1990s, physicians have seen a general increase in patient

Internet usage rates. Patients frequently enter their doctor’s offices with

printed Web pages of home remedies in the guise of latest medical research.

This scenario is so common that doctors often spend more time dispelling

misleading information than guiding patients through sound therapies.
The

Official Patient’s Sourcebook on Lupus Nephritis
has been created for patients who have decided to make education and research an integral part of the

treatment process. The pages that follow will tell you where and how to look

for information covering virtually all topics related to lupus nephritis, from the essentials to the most advanced areas of research.

The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced

to give you some of the latest official information available to date on lupus nephritis.

Given patients’ increasing sophistication in using the Internet, abundant

references to reliable Internet-based resources are provided throughout this

sourcebook. Where possible, guidance is provided on how to obtain free-of-

charge, primary research results as well as more detailed information via the

Internet. E-book and electronic versions of this sourcebook are fully

interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of

this sourcebook can type cited Web addresses directly into their browsers to

obtain access to the corresponding sites. Since we are working with ICON

Health Publications, hard copy
Sourcebooks
are frequently updated and

printed on demand to ensure that the information provided is current.

In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of

technical or uncommon terms in an appendix. In editing this sourcebook, we

have decided to place a smaller glossary within each chapter that covers

terms used in that chapter. Given the technical nature of some chapters, you

may need to revisit many sections. Building one’s vocabulary of medical

terms in such a gradual manner has been shown to improve the learning

process.

We must emphasize that no sourcebook on lupus nephritis should affirm

that a specific diagnostic procedure or treatment discussed in a research

study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on appropriate

options is always up to the patient in consultation with their physician and

healthcare providers.

Organization

This sourcebook is organized into three parts. Part I explores basic

techniques to researching lupus nephritis (e.g. finding guidelines on

diagnosis, treatments, and prognosis), followed by a number of topics,

including information on how to get in touch with organizations,

associations, or other patient networks dedicated to lupus nephritis. It also

gives you sources of information that can help you find a doctor in your local area specializing in treating lupus nephritis. Collectively, the material

presented in Part I is a complete primer on basic research topics for patients with lupus nephritis.

Part II moves on to advanced research dedicated to lupus nephritis. Part II is intended for those willing to invest many hours of hard work and study. It is

here that we direct you to the latest scientific and applied research on lupus nephritis. When possible, contact names, links via the Internet, and

summaries are provided. It is in Part II where the vocabulary process

becomes important as authors publishing advanced research frequently use

highly specialized language. In general, every attempt is made to

recommend “free-to-use” options.

Part III provides appendices of useful background reading for all patients

with lupus nephritis or related disorders. The appendices are dedicated to

more pragmatic issues faced by many patients with lupus nephritis.

Accessing materials via medical libraries may be the only option for some

readers, so a guide is provided for finding local medical libraries which are

open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with lupus nephritis.

Scope

While this sourcebook covers lupus nephritis, your doctor, research

publications, and specialists may refer to your condition using a variety of

terms. Therefore, you should understand that lupus nephritis is often

considered a synonym or a condition closely related to the following:

· Focal Glomerulonephritis

· Lupus Glomerular Disease

4

Lupus Nephritis

· Lupus Glomerulonephritis

· Nephritis - Lupus

In addition to synonyms and related conditions, physicians may refer to

lupus nephritis using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most

commonly used system of classification for the world’s illnesses. Your

physician may use this coding system as an administrative or tracking tool.

The following classification is commonly used for lupus nephritis:
4

· 710.0 lupus nephritis

For the purposes of this sourcebook, we have attempted to be as inclusive as

possible, looking for official information for all of the synonyms relevant to lupus nephritis. You may find it useful to refer to synonyms when accessing

databases or interacting with healthcare professionals and medical librarians.

Moving Forward

Since the 1980s, the world has seen a proliferation of healthcare guides

covering most illnesses. Some are written by patients or their family

members. These generally take a layperson’s approach to understanding and

coping with an illness or disorder. They can be uplifting, encouraging, and

highly supportive. Other guides are authored by physicians or other

healthcare providers who have a more clinical outlook. Each of these two

styles of guide has its purpose and can be quite useful.

As editors, we have chosen a third route. We have chosen to expose you to

as many sources of official and peer-reviewed information as practical, for

the purpose of educating you about basic and advanced knowledge as

recognized by medical science today. You can think of this sourcebook as

your personal Internet age reference librarian.

Why “Internet age”? All too often, patients diagnosed with lupus nephritis

will log on to the Internet, type words into a search engine, and receive

several Web site listings which are mostly irrelevant or redundant. These

4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized.

Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.”

patients are left to wonder where the relevant information is, and how to

obtain it. Since only the smallest fraction of information dealing with lupus

nephritis is even indexed in search engines, a non-systematic approach often

leads to frustration and disappointment. With this sourcebook, we hope to

direct you to the information you need that you would not likely find using

popular Web directories. Beyond Web listings, in many cases we will

reproduce brief summaries or abstracts of available reference materials.

These abstracts often contain distilled information on topics of discussion.

Before beginning your search for information, it is important for you to

realize that lupus nephritis is considered a relatively uncommon condition.

Because of this, far less research is conducted on lupus nephritis compared

to other health problems afflicting larger populations, like breast cancer or

heart disease. Nevertheless, this sourcebook will prove useful for two

reasons. First, if more information does become available on lupus nephritis, the sources given in this book will be the most likely to report or make such

information available. Second, some will find it important to know about

patient support, symptom management, or diagnostic procedures that may

be relevant to both lupus nephritis and other conditions. By using the

sources listed in the following chapters, self-directed research can be

conducted on broader topics that are related to lupus nephritis but not

readily uncovered using general Internet search engines (e.g.

www.google.com or www.yahoo.com). In this way, we have designed this

sourcebook to complement these general search engines that can provide

useful information and access to online patient support groups.
5

While we focus on the more scientific aspects of lupus nephritis, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a

chapter dedicated to helping you find peer groups and associations that can

provide additional support beyond research produced by medical science.

We hope that the choices we have made give you the most options available

in moving forward. In this way, we wish you the best in your efforts to

incorporate this educational approach into your treatment plan.

The Editors

5 For example, one can simply go to
www.google.com,
or other general search engines (e.g.

www.yahoo.com
,
www.aol.com
,
www.msn.com
) and type in “lupus nephritis support group” to find any active online support groups dedicated to lupus nephritis.

7

Part I has been edited to give you access to what we feel are “the essentials”

on lupus nephritis. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or

symptoms associated with the disease, tests or diagnostic procedures that

might be specific to the disease, and treatments for the disease. Your doctor

or healthcare provider may have already explained the essentials of lupus

nephritis to you or even given you a pamphlet or brochure describing lupus

nephritis. Now you are searching for more in-depth information. As editors,

we have decided, nevertheless, to include a discussion on where to find

essential information that can complement what your doctor has already

told you. In this section we recommend a process, not a particular Web site

or reference book. The process ensures that, as you search the Web, you gain

background information in such a way as to maximize your understanding.

Guidelines 9

CHAPTER 1. THE ESSENTIALS ON LUPUS NEPHRITIS:

GUIDELINES

Overview

Official agencies, as well as federally-funded institutions supported by

national grants, frequently publish a variety of guidelines on lupus nephritis.

These are typically called “Fact Sheets” or “Guidelines.” They can take the

form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is

that they are often written with the patient in mind. Since new guidelines on

lupus nephritis can appear at any moment and be published by a number of

sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them.

The National Institutes of Health (NIH)
6

The National Institutes of Health
(NIH) is the first place to search for relatively current patient guidelines and fact sheets on lupus nephritis.

Originally founded in 1887, the NIH is one of the world’s foremost medical