Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

Annotated Bibliography: Information Needs of a Patient with Systemic Lupus Erythematosus LI861XI Jayme Johnson

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Information Needs of a Patient with Systemic Lupus Erythematosus What is Lupus? Lupus is an autoimmune disease where the body's immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs. Under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy

tissue - not just antigens - causing swelling, pain, and tissue damage. (Lupus What is Lupus?, n.d.)

In analyzing the information needs of this user group, lupus patients and their family members, I found that the majority of users are looking for basic information such as; tests, treatments & outcomes, symptoms, and causes. Also since this disorder is an invisible illness, there are no symptoms that are visible to the naked eye, many patrons may also be looking for information about the emotional toll that comes with dealing with the disorder. The majority of the information and resources that I found contained the basic research that most patients and their families would be looking for. I also included a section just for books and group forums based upon support for the patients. As a person who was diagnosed in 2009 with Systemic Lupus Erythematosus, I also have firsthand knowledge about the types of information those diagnosed with the disorder would be looking for. As for the reading level / comprehension of the material, I tried to keep a well-balanced mix of information sources that could be applicable to all difference categories of patrons, those just diagnosed to those of us living with Lupus for years. Broken down into categories such as; Articles, Websites, Books, etc, I chose to include a few more specific categories as well.

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Coping/Support Groups: this grouping looks at both books and online support for those diagnosed and their family members. As an invisible illness, it is sometime hard to come to terms with the changes in your life and the reaction of those around you.

Diagnosis Information: this section looks at information needed for patients before, during and after their diagnosis. What test will I undergo? What treatment will I be put on?

Medication: related to diagnosis information, this topic gives patients and their families the ability to look at the types of medication or therapies that they will need to undergo.

Articles: Aboki, J., Martnez Sanchs, A., & Perdiguero Gil, M. (2009). Systemic lupus erythematosus [Spanish]. Metas de Enfermera, 12(1), 2026. This article includes general hygienic recommendations, recommendations for the reduction of cardiovascular risk and other comorbidities, emphasis on the importance of adherence to treatment and follow-up visits. Written in Spanish. Barwick, A. (2000). Understanding lupus. Nursing Standard, 14(46), 47. Lupus is a chronic inflammatory disease mainly affecting women of childbearing years. Angela Barwick discusses the condition, dealing with the diagnosis itself, the symptoms, treatment and the effects on the patient's lifestyle and wellbeing. Lakasing, L., & Khamashta, M. (2001). Contraceptive practices in women with systemic lupus erythematosus and/or antiphospholipid syndrome: what advice should we be giving? The Journal of Family Planning and Reproductive Health Care / Faculty of Family Planning & Reproductive Health Care, Royal College of Obstetricians & Gynaecologists, 27(1), 712. Systemic lupus erythematosus (SLE) is an autoimmune oestrogen-mediated disease. Antiphospholipid syndrome (APS) is an autoimmune acquired thrombophilia. These two conditions may co-exist and are most frequently diagnosed in young women. Hormonal contraception may promote lupus activity and thrombosis. This article discusses the treatments available and looks at results of past recommendations.

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Leach, M. (1998). Signs and symptoms of systemic lupus erythematosus. Nursing Times, 94(13), 5052. The autoimmune disease lupus erythematosus manifests itself in many ways. Martin Leach explains what a nurse needs to know to help patients and their families come to terms with it. Although directed towards nursing students, a patient might also find this article useful. Litton, K., & Bauer, J. (2003). Defenses gone awry: lupus. RN, 66(3), 5360. Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease that tends to affect women of childbearing age. It has no known cure and an unpredictable course. Understanding how to recognize and treat SLE, as well as how to educate patients about it, are essential components of good care. Mendelson, C. (2006). Managing a Medically and Socially Complex Life: Women Living With Lupus. Qualitative Health Research, 16(7), 982997. doi:10.1177/1049732306290132 Because so little is known about living with lupus, the author undertook a qualitative study to identify salient aspects of affected women's daily experiences. The complexity of life with lupus is dimensionalized by the overlapping themes, identified as a life of uncertainty, a shifting sense of identity, and managing the financial burden of illness. Although this article is directed more towards medical personnel than patients, some patients might find it useful in their research about living with lupus. Coping and Support: Donoghue, P. J., & Siegel, M. E. (2000). Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness, Second Edition. W. W. Norton & Company. While this book isnt specifically about Lupus, it does deal with invisible chronic illness and the problems that those diagnosed with them deal with every day. This book focuses on how to deal with family, friends, doctors, and strangers that dont understand what it is like to live day to day with an illness that cant be seen. Gorman, S. (2009). Despite Lupus: How to Live Well with a Chronic Illness. Four Legged Press.

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Written by a woman after her own diagnosis of Lupus, this book is a guide to dealing with your disorder and the emotional toll that it takes. With chapters about acceptance, dealing with the doctors, and communication with others, this book is a great way to take control of your life back from your illness. Hanger, N. C., & Schneebaum, A. B. (2003). The first year--lupus: an essential guide for the newly diagnosed. Da Capo Press. A book focused on the steps that a newly diagnosed person should take during their first year after being diagnosed. Provides information about symptoms and treatments as well as how to deal with the emotional aspects of the new diagnosis. People Healing People: Lupus Support Group. (n.d.). Retrieved from http://www.mdjunction.com/lupus A free Lupus support website with almost 1800 members. Dedicated to Lupus patients, family members and friends, the patron looking for information on Lupus would be able to speak with others in the same situation. A warning: not all the information on these sites are always correct. This is a support site where people are allowed to give opinions. Medical advice should not be accepted from these types of sites. Phillips, R. H. (2001). Coping with lupus: a practical guide to alleviating the challenges of systemtic lupus erythematosus. Penguin. A part of the Averys Coping with Chronic Illness series, this book gives advice to patients and family members of a person dealing with the Lupus disorder about how to manage medications, life and emotions brought on by living with this chronic illness. WebMD Lupus Community: Support Group. (n.d.). Retrieved April 21, 2012, from http://exchanges.webmd.com/lupus-exchange A website created for Lupus patients and their loved ones by WebMD.com. It provides access to other people who have been diagnosed with the disorder. This could be helpful for the patient or family members if they are not familiar with anyone else with the disorder. Diagnosis Information: Fischbach, F., & Dunning, M. B. (2008). A Manual of Laboratory and Diagnostic Tests (8th ed.). Lippincott Williams & Wilkins.

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Used to determine the proper procedures for tests, this book could be used to inform a patient of Lupus about what exact tests they will need to have done. I would recommend this book to a more medically savvy patron who has already been diagnosed. MD, E. T. B., & Kellerman, R. D. (2011). Conns Current Therapy 2012: Expert Consult - Online and Print (1 Har/Psc.). Saunders. After a diagnosis with Lupus, many patrons will be interested to see what the next step in treatment is. Conns Current Therapy provides evidence-based management options for applying the latest, most effective therapeutic treatments. Encyclopedias and Dictionaries: Dorland. (2011). Dorlands Illustrated Medical Dictionary, 32e (32nd ed.). Saunders. This illustrated medical dictionary will allow patrons to fully understand any information in the resources made available. Even though the majority of sources here are for the consumer, it will help them identify any terms that they may not be familiar with Fundukian, L. J. (Ed.). (2011). The Gale Encyclopedia of Medicine (4th ed.). GALE. Although many of the books and articles here are written specifically for the patient or consumer and not someone with a medical background. An encyclopedia would still be useful in deciphering any concepts that are confusing. Books: Hughes, G. (2009). The London Lupus Centre, Book of Lupus: A Patients Guide. London: Springer. Written by Dr. Hughes, a preeminent doctor in Lupus and Antiphospholipid Syndrome studies, this book looks at the major areas of interest (symptoms, tests, treatment) as well as associated disorders, including Ryanauds syndrome and Antiphospholipid syndrome. Isenberg, D., & Manzi, S. (2008). Lupus. London: Oxford University Press. Written specifically with the patient in mind, this book gives a good overall look at the basics of the Lupus disorder. The book examines the basics of understanding this disorder such as tests, treatment and symptoms but also looks at how to live and cope with lupus as well. I would recommend this book for anyone looking to find information on Lupus.

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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Tsokos, G. C., Gordon, C., & Smolen, J. S. (2007). Systemic Lupus Erythematosus: A Companion to Rheumatology. Philadelphia: Elsevier Health Sciences. While this work is admitted directed towards clinical settings it gives a wealth of information about the rheumatological aspects of Lupus including tissue damage, fatigue, immune responses, and treatments. This work could be recommended to a patron that would be comfortable dealing with the more technical language. Wallace, D. J. (2008b). The Lupus Book: A Guide for Patients and Their Families. London: Oxford University Press. A very complete guide for patients with Lupus and their family members. The most recent addition includes a wealth of information about tests, clinical trials, symptoms, therapies, and much more. Recommended for people diagnosed with Lupus, new or old and their families. Medications: MedlinePlus: Drugs, Herbs and Supplements: MedlinePlus. (n.d.). Retrieved April 25, 2012, from http://www.nlm.nih.gov/medlineplus/druginformation.html An online database of drugs, supplements, and herbal information. This reference could be useful for a recently diagnosed patient to look up information on new medicines just prescribed to them. Physicians Desk Reference, 66th Edition (2012th ed.). PDR Network. Completely updated every year, "PDR" provides critical, current information on the most commonly prescribed drugs in the U.S. Every full, FDA-approved drug label in "PDR" includes: Dosages; Indications; Warnings and precautions; Side effects, plus much more. This would be a good resource for someone just diagnosed and looking for information on new medications prescribed. Websites: Could I Have Lupus?: Home. (n.d.). Retrieved April 27, 2012, from http://www.couldihavelupus.gov/ Handout on Health: Systemic Lupus Erythematosus. (n.d.). Retrieved April 6, 2012, from http://www.niams.nih.gov/Health_Info/Lupus/default.asp A handout from the National Institute of Arthritis and Musculoskeletal and Skin Disease. Since many patients with Lupus exhibit symptoms of arthritis, joint pain, or skin conditions the NIAMS has

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS

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created a handout that explains many of the issues related to Lupus including; tests, symptoms, treatment, and quality of life. Lupus | womenshealth.gov. (n.d.). Retrieved April 6, 2012, from http://www.womenshealth.gov/healthtopics/a-z-topic/pubs-orgs.cfm?topic=1025 Since almost 90% of people effected by the Lupus disorder are woman, this site focuses womens health. Stocked with loads of information and handouts on Lupus, it also contains information about related disorders, such as Reynauds Syndrome, Antiphospholipid Syndrome, Kidney disease, and skin health. Lupus Clinical Trials. (n.d.). Retrieved April 6, 2012, from http://www.lupustrials.org/ Lupus Clinical Trials is a website that list on-going trials as well as trials that are looking for Lupus participants. Many of the trials range in subject from medication trials to genetic and family oriented studies. This site could provide much information to Lupus patients interested in taking part in Lupus related studies. Lupus Foundation of America. (n.d.). Retrieved April 5, 2012, from http://www.lupus.org/newsite/index.html The website of the National Lupus Foundation of America. The site provides many different types of information, including information about the disorder, research currently being done, and resources. It also has information about how to get involved in local chapters of the Lupus Foundation. This would be a great resources for someone recently diagnosed or a friend or family member of someone recently diagnosed. Lupus: MedlinePlus Interactive Health Tutorial from the Patient Education Institute. (n.d.). Retrieved April 6, 2012, from http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htm An interactive tutorial on Lupus. Explains the differences between Systemic, Discoid (or Cutaneous), Drug-Induced, and Neonatal. Would be a great reference for someone just diagnosed and who is uncomfortable with computers. Lupus - What is Lupus? (n.d.). Retrieved April 27, 2012, from http://www.medicalnewstoday.com/info/lupus/

Running Head: INFORMATION NEEDS OF A PATIENT WITH SYSTEMIC LUPUS ERYTHEMATOSUS MedlinePlus - Search Results for: Lupus. (n.d.). Retrieved April 6, 2012, from http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/querymeta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0 Search results from MedlinePlus for Lupus. Contains a listing of articles and a quick

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description of what the term Lupus means. Provided keyword searches for symptoms, tests, and other conditions associated with Lupus. A good starting point for someone just diagnosed. Systemic lupus erythematosus: MedlinePlus Medical Encyclopedia. (n.d.). Retrieved April 6, 2012, from http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm Quick overview of causes, symptoms, exams, tests, and treatments for people with Systemic Lupus Erythematosus. Would be a good starting place for someone who has just been diagnosed. Provided by MedlinePlus. Conclusion Recently, the government and several different organizations (including Lupus Foundation of America) has increased its visibility to the public, with television and print campaigns urging women to ask Could I have Lupus (Could I have Lupus, n.d.). With the increased visibility comes more information about the disorder. Most of the resources I found look at the primary information that patients and their family members are interested in, with some areas going even further to look at the emotional toll of the disorder as well. The only problem that I found is that most of the information seems to be biased towards women. Since 90% of those diagnosed with the disorder are women it makes sense to tackle issues like birth control and reproductive issues. (Lupus, n.d.) But since 10% of the people diagnosed are men, there is a lack of information dealing with issues that pertain only to men.