According to a story from Oncology Nurse Advisor, a recent study found that patients with immune thrombocytopenia do not carry the same understanding as their doctors do when it comes to how fatigue impacts overall quality of life. Overall, the survey found that physicians tended to under-report fatigue in comparison to self-reporting from patients.
About Immune Thrombocytopenia
Immune thrombocytopenia (ITP) describes a condition if abnormally low platelet count in bone marrow that is otherwise normal without any recognizable external cause. Platelets play an essential role in forming blood clots in order to halt wound bleeding. Immune thrombocytopenia is known as an autoimmune disease, in which the immune system mistakenly attacks parts of the body; antibodies that target surface antigens found on platelets are the telltale sign. Symptoms of the condition include purpura (small purplish skin rashes), excessive menstrual bleeding in women, bleeding from the gums and/or nose, small bruises called petechiae, and blood masses (hematomas) on mucosal surfaces. In severe cases of the condition, very low platelet counts can lead to potentially lethal internal bleeding. Treatment, which is usually only recommended when severe bleeding occurs, may include steroids, IVIg, surgical removal of the spleen, and platelet transfusion. To learn more about immune thrombocytopenia, click here.
About The Survey
This survey study was comprised of physicians experienced with the treatment of immune thrombocytopenia as well as patients with the condition. The study gathered patients from 12 countries and physicians from 13. The survey included 1,491 patients and 472 physicians.
The survey included a request from both patients and physicians to report their most common symptoms. Responses from patients included these symptoms:
- petechiae (small bruises which for red spots on skin)
Physicians reported these symptoms:
- purpura (larger skin spots similar to petechiae)
- bleeding gums
- nose bleeds
Physicians reported fatigue at diagnosis 30 percent of the time, whereas patients reported this symptom 58 percent of the time at diagnosis. Patients were also likely to report their fatigue as severe at diagnosis, with 74 percent of patients who reported fatigue doing so. Patients also reported their fatigue as within the top three most severe symptoms from which they would like to find relief 73 percent of the time.
Generally, the findings illustrate that patients and physicians found broad agreement on the burden of immune thrombocytopenia symptoms, but there was still a noticeable disparity between their perceptions of fatigue. 79 percent of patients expressed satisfaction with the management of their disease.
Doctors and their patients should do everything they can to communicate about symptoms and quality of life and honestly as possible. It may be easy for patients to ignore reporting fatigue because it is rather vague, but it clearly has a major impact for patients with immune thrombocytopenia.
Check out the original study here.