Adult Immune Thrombocytopenic Purpura Itp 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 adult immune thrombocytopenic purpura 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 adult immune thrombocytopenic purpura advocate is the support of 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. Adult immune thrombocytopenic purpura 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 adult immune thrombocytopenic purpura 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 Adult Immune Thrombocytopenic Purpura (ITP)?
Adult immune thrombocytopenic purpura, also known as idiopathic thrombocytopenic purpura – ITP, is a blood disorder that is characterized by a low platelet count. It is usually less than 100 000/mm3. The main issue is easy bruising and bleeding from the mucous membranes. In adults the problem follows a chronic trend unlike in children where the problem is self-limiting. Bleeding can be serious to warrant emergency attention
The condition can be symptomless. When there are symptoms they may include the following:
· Bleeding under the skin and mucous membranes
· Overt bleeding
· Easily bruising and the bleeding taking too long before stopping.
· Heavy and prolonged menses (polymenorrhagia)
· Bleeding gums
· Easy fatigability
· Blood in stools.
Causes and Risk Factors
Idiopathic means ‘no obvious cause’ and so the real cause of this fall in platelet count is not known. Scientists have however, discovered that an immune process is involved whereby the body forms antibodies that marks platelets for destruction. Why this happens is not known. There are however, factors that appear to promote the disorder. They include:
· Gender. Women are more than twice more likely to develop the problem than men.
· Viral infections. For unknown reasons, the crisis can appear after an acute viral infection
A detailed history of the illness and a thorough medical examination forms the first step into making an accurate diagnosis. Other investigations include:
Complete blood count is done to determine the number of red blood cells, white blood cells and platelets that are present.
Blood smear microscopic examination is done to confirm the results of the complete blood count.
Bone marrow biopsy examination gives a good picture of the state of platelet production. This test also helps to pinpoint whether the problem is within the bone marrow or the platelets are being destroyed in the blood stream
Treatment for adult ITP can include watchful monitoring in mild states of low platelet count without any other problem like bleeding. If there are other problems associated with the low platelet count further treatment may include:
· Drug therapy. Since some immunity disorder is suspected in ITP, corticosteroids are given to try and lower the immunity’s ’aggression’ against the platelets. The commonest steroid used is prednisone for 2-6 weeks. Steroids must never be stopped suddenly but their use must be gradually tapered off to avoid the body’s systems from shutting down. They must also not be used indefinitely as they can create serious side effects.
· Intravenous immune globulins help raise blood count especially before surgery. Another option is to use Rho (D) immune globulins.
· Thrombopoietin receptor agonists usually boost the bone marrow to produce more platelets. Drugs in this class include Romiplostin and Eltrombopag
· Biological therapies are used in patients who have not benefited from corticosteroid use. The drug commonly used for this is Rituximab which work by modifying the immune system to be less active against the platelets.
· Avoidance of drugs that are known to be anti-platelets must be ascertained. Aspirin and blood thinning drugs like warfarin are examples.
· Surgery to remove the spleen may be necessary for certain patients.
· Sudden severe bleeding is an emergency that may call for transfusion of platelet concentrates together with other supportive management.
· Cytotoxic drugs and drugs used in the treatment of H.pylori have been tried but though sometimes useful, results are not consistent.
U.S. Statistics for ITP
The incidence is about 1: 10,000 per year.
About 200,000 people are living with immune thrombocytopenic purpura in the U.S
Men and women are affected equally and those above 60 years of age are more prone to the disorder.