The Official Patient's Sourcebook on Lupus (6 page)

database maintained by the National Library of Medicine. The database

comprises some 10,000 records of organizations, research centers, and

government institutes and associations which primarily focus on health and

biomedicine. DIRLINE is available via the Internet at the following Web site:

http://dirline.nlm.nih.gov/
. Simply type in “lupus nephritis” (or a synonym) or the name of a topic, and the site will list information contained in the

database on all relevant organizations.

The Combined Health Information Database

Another comprehensive source of information on healthcare associations is

the Combined Health Information Database. Using the “Detailed Search”

option, you will need to limit your search to “Organizations” and “lupus

nephritis”. Type the following hyperlink into your Web browser:

http://chid.nih.gov/detail/detail.html
. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search

by.” For publication date, select “All Years.” Then, select your preferred

language and the format option “Organization Resource Sheet.” By making

these selections and typing in “lupus nephritis” (or synonyms) into the “For

these words:” box, you will only receive results on organizations dealing

with lupus nephritis. You should check back periodically with this database

since it is updated every 3 months.

24 Lupus Nephritis

The National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders, Inc. has prepared a Web site

that provides, at no charge, lists of associations organized by specific

diseases. You can access this database at the following Web site:

http://www.rarediseases.org/cgi-bin/nord/searchpage
. Select the option

called “Organizational Database (ODB)” and type “lupus nephritis” (or a

synonym) in the search box.

Online Support Groups

In addition to support groups, commercial Internet service providers offer

forums and chat rooms for people with different illnesses and conditions.

WebMDÒ, for example, offers such a service at their Web site:

http://boards.webmd.com/roundtable
. These online self-help communities

can help you connect with a network of people whose concerns are similar to

yours. Online support groups are places where people can talk informally. If

you read about a novel approach, consult with your doctor or other

healthcare providers, as the treatments or discoveries you hear about may

not be scientifically proven to be safe and effective. The following Internet sites may be of particular interest:

·
Missouri Arthritis Rehabilitation Research and Training Center

http://www.muhealth.org/~arthritis/lupus/links.html

·
National Kidney Foundation of Southern California

http://www.kidneysocal.org/calendar_supportgroups.html

·
Lupus Foundation of America, Georgia Chapter

http://www.lfaga.org/serv02.htm

Finding Doctors

One of the most important aspects of your treatment will be the relationship

between you and your doctor or specialist. All patients with lupus nephritis

must go through the process of selecting a physician. While this process will

vary from person to person, the Agency for Healthcare Research and Quality

makes a number of suggestions, including the following:
11

· If you are in a managed care plan, check the plan’s list of doctors first.

11 This section is adapted from the AHRQ:
www.ahrq.gov/consumer/qntascii/qntdr.htm
.

Seeking Guidance 25

· Ask doctors or other health professionals who work with doctors, such as

hospital nurses, for referrals.

· Call a hospital’s doctor referral service, but keep in mind that these

services usually refer you to doctors on staff at that particular hospital.

The services do not have information on the quality of care that these

doctors provide.

· Some local medical societies offer lists of member doctors. Again, these

lists do not have information on the quality of care that these doctors

provide.

Additional steps you can take to locate doctors include the following:

· Check with the associations listed earlier in this chapter.

· Information on doctors in some states is available on the Internet at

http://www.docboard.org
. This Web site is run by “Administrators in

Medicine,” a group of state medical board directors.

· The American Board of Medical Specialties can tell you if your doctor is

board certified. “Certified” means that the doctor has completed a

training program in a specialty and has passed an exam, or “board,” to

assess his or her knowledge, skills, and experience to provide quality

patient care in that specialty. Primary care doctors may also be certified

as specialists. The AMBS Web site is located at

http://www.abms.org/newsearch.asp
.
12
You can also contact the ABMS

by phone at 1-866-ASK-ABMS.

· You can call the American Medical Association (AMA) at 800-665-2882

for information on training, specialties, and board certification for many

licensed doctors in the United States. This information also can be found

in “Physician Select” at the AMA’s Web site:
http://www.ama-

assn.org/aps/amahg.htm
.

Finding a Urologist

The American Urological Association (AUA) provides the public with a free-

to-use “Find A Urologist” service to help patients find member urologists in

their area. The database can be searched by physician name, city, U.S. State,

or country and is available via the AUA’s Web site located at

http://www.auanet.org/patient_info/find_urologist/index.cfm
. According to the AUA: “The American Urological Association is the professional

12 While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified.

26 Lupus Nephritis

association for urologists. As the premier professional association for the

advancement of urologic patient care, the AUA is pleased to provide Find A

Urologist, an on-line referral service for patients to use when looking for a

urologist. All of our active members are certified by the American Board of

Urology, which is an important distinction of the urologist’s commitment to

continuing education and superior patient care
.”13

If the previous sources did not meet your needs, you may want to log on to

the Web site of the National Organization for Rare Disorders (NORD) at

http://www.rarediseases.org/
. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network

(MIN), 800-945-2188, also maintains a database of physicians with expertise

in various metabolic diseases.

Selecting Your Doctor14

When you have compiled a list of prospective doctors, call each of their

offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask

yourself if you are prepared to pay the extra costs. The next step is to

schedule a visit with your chosen physician. During the first visit you will

have the opportunity to evaluate your doctor and to find out if you feel

comfortable with him or her. Ask yourself, did the doctor:

· Give me a chance to ask questions about lupus nephritis?

· Really listen to my questions?

· Answer in terms I understood?

· Show respect for me?

· Ask me questions?

· Make me feel comfortable?

· Address the health problem(s) I came with?

· Ask me my preferences about different kinds of treatments for lupus

nephritis?

· Spend enough time with me?

13 Quotation taken from the AACE’s Web site:
http://www.aace.com/memsearch.php
.

14 This section has been adapted from the AHRQ:

www.ahrq.gov/consumer/qntascii/qntdr.htm
.

Seeking Guidance 27

Trust your instincts when deciding if the doctor is right for you. But

remember, it might take time for the relationship to develop. It takes more

than one visit for you and your doctor to get to know each other.

Working with Your Doctor
15

Research has shown that patients who have good relationships with their

doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners:

· You know important things about your symptoms and your health

history. Tell your doctor what you think he or she needs to know.

· It is important to tell your doctor personal information, even if it makes

you feel embarrassed or uncomfortable.

· Bring a “health history” list with you (and keep it up to date).

· Always bring any medications you are currently taking with you to the

appointment, or you can bring a list of your medications including

dosage and frequency information. Talk about any allergies or reactions

you have had to your medications.

· Tell your doctor about any natural or alternative medicines you are

taking.

· Bring other medical information, such as x-ray films, test results, and

medical records.

· Ask questions. If you don’t, your doctor will assume that you understood

everything that was said.

· Write down your questions before your visit. List the most important

ones first to make sure that they are addressed.

· Consider bringing a friend with you to the appointment to help you ask

questions. This person can also help you understand and/or remember

the answers.

· Ask your doctor to draw pictures if you think that this would help you

understand.

· Take notes. Some doctors do not mind if you bring a tape recorder to help

you remember things, but always ask first.

15 This section has been adapted from the AHRQ:

www.ahrq.gov/consumer/qntascii/qntdr.htm
.

28 Lupus Nephritis

· Let your doctor know if you need more time. If there is not time that day,

perhaps you can speak to a nurse or physician assistant on staff or

schedule a telephone appointment.

· Take information home. Ask for written instructions. Your doctor may

also have brochures and audio and videotapes that can help you.

· After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems

with your medication, call. If you had tests and do not hear from your

doctor, call for your test results. If your doctor recommended that you

have certain tests, schedule an appointment to get them done. If your

doctor said you should see an additional specialist, make an

appointment.

By following these steps, you will enhance the relationship you will have

with your physician.

Broader Health-Related Resources

In addition to the references above, the NIH has set up guidance Web sites

that can help patients find healthcare profession
als. These include:16

· Caregivers:

http://www.nlm.nih.gov/medlineplus/caregivers.html

· Choosing a Doctor or Healthcare Service:

http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv

ice.html

· Hospitals and Health Facilities:

http://www.nlm.nih.gov/medlineplus/healthfacilities.html

16 You can access this information at:

http://www.nlm.nih.gov/medlineplus/healthsystem.html
.

Trials 29

CHAPTER 3. CLINICAL TRIALS AND LUPUS NEPHRITIS

Overview

Very few medical conditions have a single treatment. The basic treatment

guidelines that your physician has discussed with you, or those that you

have found using the techniques discussed in Chapter 1, may provide you

with all that you will require. For some patients, current treatments can be

enhanced with new or innovative techniques currently under investigation.

In this chapter, we will describe how clinical trials work and show you how

to keep informed of trials concerning lupus nephritis.

What Is a Clinical Trial?
17

Clinical trials involve the participation of people in medical research. Most

medical research begins with studies in test tubes and on animals.

Treatments that show promise in these early studies may then be tried with

people. The only sure way to find out whether a new treatment is safe,

effective, and better than other treatments for lupus nephritis is to try it on patients in a clinical trial.

17 The discussion in this chapter has been adapted from the NIH and the NEI:
www.nei.nih.gov/netrials/ctivr.htm
.

30 Lupus Nephritis

What Kinds of Clinical Trials Are There?

Clinical trials are carried out in three phases:

·
Phase I.
Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication,

researchers also try to determine how much of it can be given safely.

·
Phase II.
Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on lupus nephritis.