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Running Head: INFORMATION NEEDS OF A PATIENT WITHSYSTEMIC LUPUS ERYTHEMATOSUS

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

LI861XI

Jayme Johnson


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Running Head: INFORMATION NEEDS OF A PATIENT WITH Johnson, 1SYSTEMIC LUPUS ERYTHEMATOSUS

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.


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Coping/Support Groups: this grouping looks at both books and online support for those diagnosedand 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 andafter 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 abilityto 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.


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Running Head: INFORMATION NEEDS OF A PATIENT WITH Johnson, 3SYSTEMIC LUPUS ERYTHEMATOSUSLeach, 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.


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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 fromhttp://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.
http://www.mdjunction.com/lupushttp://www.mdjunction.com/lupushttp://www.mdjunction.com/lupushttp://exchanges.webmd.com/lupus-exchangehttp://exchanges.webmd.com/lupus-exchangehttp://exchanges.webmd.com/lupus-exchangehttp://www.mdjunction.com/lupus


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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.


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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
http://www.nlm.nih.gov/medlineplus/druginformation.htmlhttp://www.nlm.nih.gov/medlineplus/druginformation.htmlhttp://www.niams.nih.gov/Health_Info/Lupus/default.asphttp://www.niams.nih.gov/Health_Info/Lupus/default.asphttp://www.niams.nih.gov/Health_Info/Lupus/default.asphttp://www.nlm.nih.gov/medlineplus/druginformation.html


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Running Head: INFORMATION NEEDS OF A PATIENT WITH Johnson, 7SYSTEMIC LUPUS ERYTHEMATOSUScreated 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, fromhttp://www.womenshealth.gov/health-

topics/a-z-topic/pubs-orgs.cfm?topic=1025

Since almost 90% ofpeople 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, fromhttp://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, fromhttp://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, fromhttp://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/
http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025http://www.lupustrials.org/http://www.lupustrials.org/http://www.lupustrials.org/http://www.lupus.org/newsite/index.htmlhttp://www.lupus.org/newsite/index.htmlhttp://www.lupus.org/newsite/index.htmlhttp://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htmhttp://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htmhttp://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htmhttp://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htmhttp://www.lupus.org/newsite/index.htmlhttp://www.lupustrials.org/http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025http://www.womenshealth.gov/health-topics/a-z-topic/pubs-orgs.cfm?topic=1025


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MedlinePlus - Search Results for: Lupus. (n.d.). Retrieved April 6, 2012, from

http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-

meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0

Search results from MedlinePlus for Lupus. Contains a listing of articles and a quick

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.
http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0http://www.nlm.nih.gov/medlineplus/ency/article/000435.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000435.htmhttp://www.nlm.nih.gov/medlineplus/ency/article/000435.htmhttp://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=Lupus&x=0&y=0