Rheumatoid Arthritis Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the rheumatoid arthritis patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the rheumatoid arthritis advocate to the support the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Rheumatoid arthritis patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of rheumatoid arthritis patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is Rheumatoid Arthritis?
Rheumatoid arthritis is an auto-immune systemic disease that affects the joints, the tissues around, the bones and as the disease progresses; it affects other body systems and organs far away from the joints. An auto immune disease is one where the body’s immune system turns against itself and start to destroy itself. It is a disease that follows a chronic trend with varied periods of remission. The onset can be insidious and all geographical regions and age groups are not spared.
The symptoms appear slowly in most cases and it can take months or years before a person seeks medical attention. Sometimes they can be acute and severe. Some of the symptoms are:
· Joints pains, Joint stiffness and swelling of the small joints of the wrists and maybe foot.
· Fingers may be spindle-shaped.
· Broadening of the fore-foot.
· Gradual involvement of other joints.
· Sudden involvement of other systems lead to fever, generalized tiredness and weight loss.
· Loss of affected joint’s function.
· Severe deformities and contractures.
· May complain of abnormal coldness of the hands – Raynaud’s Disease.
· Under the skin nodules
· Eye redness and pain.
· Mouth dryness.
· Skin sores and necrosis.
· Difficulty in breathing.
· Symptoms of heart problems like breathlessness and easily getting tired on exertion.
· The abdomen may be swollen due to an enlarged spleen.
· Numbness in various parts of the body due to nerve damage.
Causes of Rheumatoid Arthritis
The exact cause of this disease is not known. However, a number of factors appear to increase a person’s risk of getting it. These are:
· A disorganized immune system that leads to autoimmunity.
· Genetic predisposition.
· Gender – females are affected more.
· Age. Those aged between 40 and 60 years are at an increased risk.
· Family history of the disease.
Blood tests will show a raised erythrocytes sedimentation rate; a low hemoglobin level; raised C reactive proteins.
Immune test may demonstrate presence of the rheumatoid factor.
Other tests used for diagnosis are:
· Anticyclic citrullinate d-peptide (anti-CCP) antibodies test.
· Sheep cell agglutination test (SCAT)
· Differential agglutination test (DAT)
· Latex test.
Other tests involve radiology, synovial fluid analysis, synovial fluid biopsy and arthroscopy.
Laboratory tests vary in their specificity and so the final diagnosis is done on the strength of all investigation findings together with history and clinical findings put together.
The aim of treatment is to lower the symptoms and to improve quality of life and prevent morbidity and disability. Health education is important to the patient. This make them understand their condition and have realistic expectations from the treatment employed. Other forms of treatment involve.
· Rest until the period of exacerbation has passed. If severe, this will necessitate hospitalization.
· Drugs. This include over the counter drugs like Aspirin, Paracetamol and Brufen. Stronger Non-steroidal anti-inflammatory drugs (NSAIDs) may be used. Steroids are only used when absolutely necessary owing to their potential side effects.
· Diseases modifying anti-rheumatic drugs (DMARD) are helpful in preventing joint destruction. Examples are methotrexate, chloroquine and sulfasalazine
· Biologic agents (Biological response modifiers are also used as a newer method of treatment. Examples here are adacept and anakinra. Combining a non-biologic DMARD and a biologic DMARD agent gives better results.
· Corrective surgery.
· Physiotherapy, occupational therapy, social support and nursing care are all part of integrated rheumatoid arthritis treatment and care.
U.S. Rheumatoid Arthritis Statistics
According to the Centers for Disease Control and prevention (CDC) and citing Rochester Project of 1995 – 2007:
The incidence of rheumatoid arthritis is about 41 new cases in every 100000 people per year.
Aging increases the risk of the disease. For example: between the ages of 18 to 34 the ratio is 8.7 to 100000. But it is 54 to 100000 to those aged between 65 and 74.
Lifetime risk of a woman getting rheumatoid arthritis is 4%. That for men is 3%.
Direct and indirect costs related to rheumatoid arthritis is the highest comparing all arthritic conditions.
It is the most crippling of all arthritis disorders.
Rheumatoid arthritis can remain mild and tolerable throughout life. On the other hand it can be frighteningly crippling. With early diagnosis and proper care, disability can be minimized and quality of life improved.