Overview some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with Raynaud's phenomenon. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care.
in this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with Raynaud's phenomenon. The chapter ends with a discussion on how to find a doctor that is right for you.
Associations and Raynaud's Phenomenon
As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.9 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all
8 Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need.
9 This section has been adapted from http;//www.ahcpr.gov/consumei/diaginf5.htm.
influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information, by consulting all of them, you will have nearly exhausted all sources for patient associations.
The National Health Information Center (NHIC)
The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about Raynaud's phenomenon. For more information, see the NHIC's Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797.
A comprehensive source of information on associations is the DIRLINE 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 "Raynaud's phenomenon" (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations.
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 "Raynaud's phenomenon". 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 "Raynaud's phenomenon" (or synonyms) into the "For these words:" box, you will only receive results on organizations dealing with Raynaud's phenomenon. You should check back periodically with this database since it is updated every 3 months.
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 "Raynaud's phenomenon" (or a synonym) in the search box.
In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMD®, 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.
One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with Raynaud's phenomenon 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:10
• If you are in a managed care plan, check the plan's list of doctors first.
• Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals.
10 This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
• 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.11 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.
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.
11 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.
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 Raynaud's phenomenon?
• Really listen to my questions?
• Answer in terms I understood?
• Make me feel comfortable?
• Address the health problem(s) I came with?
• Ask me my preferences about different kinds of treatments for Raynaud's phenomenon?
• Spend enough time with me?
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«
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.
12 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
13 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm.
• 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.
• 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 professionals. These include:14
• 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
14 You can access this information at:
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