Immune thrombocytopenia is an autoimmune disorder characterized by isolated thrombocytopenia resulting from impaired platelet production and increased platelet destruction. 

The chief goal of treatment is to stop any active bleeds and to prevent future ones from occurring. The main therapies used in this condition are corticosteroids and additional intravenous immunoglobulin in cases of active bleeding. 

In addition to living with the risk of bleeding, studies indicate that patients with immune thrombocytopenia often struggle with fatigue, depression, and social isolation. Studies suggest that low platelet count is associated with poorer health-related quality of life scores; hence, it is something that physicians actively try to correct. However, improvements in this area alone may not be enough. 

“While many physicians focus on addressing low platelet counts as the best approach to manage their patients and avoid life-threatening bleeds, for many patients, the focus solely on platelet counts does not truly capture their experience with [immune thrombocytopenia],” Terrell and colleagues wrote in Medicina. “Instead, patients focus on the ways in which [immune thrombocytopenia] negatively affects their lives, specifically how they feel and function.” 

It is important for physicians to understand that quantifiable improvements (such as stable platelet count) may not necessarily translate to improvements in the lived experience of patients. In order to tackle the psychological burden of immune thrombocytopenia, we need to first understand the multifaceted impact of this disease on patients’ health-related quality of life. 

Immune Thrombocytopenia World Impact Survey 

In the American Journal of Hematology, Cooper and colleagues wrote about the findings of the Immune Thrombocytopenia World Impact Survey, which was completed by a total of 472 physicians and 1507 patients from 13 countries, including the United States. This survey touched on the various dimensions in which immune thrombocytopenia can leave an impact; in addition, it compares physician and patient perception of the disease and its management. 

The items on the survey encompassed the demographics, diagnosis, and symptoms of the disease, as well as its impact on work, finances, support, and relationship between patient and physician. Physicians were additionally asked about their opinion on how a diagnosis of immune thrombocytopenia affects their patients’ physical, emotional, and social well-being. 

This comprehensive survey provides an unparalleled view of how patients and physicians in both East and West approach this disease. The findings revealed that 49% of patients felt that immune thrombocytopenia worsened their psychological and emotional well-being. Among the issues of concern were whether their condition would worsen and worries about fluctuations in platelet levels. 

The survey also revealed that 41% of patients were worried about dying; when breaking this down by age, the survey revealed that 44% of patients who were 18-49 years of age were worried about dying compared to 38% of patients ≥ 50 years of age. 

With regard to the impact on their work, 49% of patients revealed that they had reduced or seriously considered reducing their working hours, and 11% were forced to stop working because of this condition. In terms of treatment satisfaction, both patients and physicians agree roughly 80% of the time that the most important attribute when making decisions about treatment was the ability of the treatment to offer sustained remission or cure of immune thrombocytopenia, as well as a reduction in bleeding risk.

Roughly 9 in 10 physicians believed that their patients were satisfied with the treatment goal set, while 8 in 10 patients agreed. Around 9 in 10 physicians felt that their patients were satisfied with the levels of communication regarding this disease and its management, while 8 in 10 patients agreed. 

Paying Attention to Patients’ Overall Needs 

“In this online survey, patients and physicians reported considerable impact of [immune thrombocytopenia] on patient [health-related quality of life], with reduced energy levels and capacity to exercise, and limited ability to perform daily tasks,” Cooper et al summarized. “Patients also described substantial influence on their emotional well-being, and many worried their condition would worsen.”

This study demonstrates that education and assurance should be given to patients when appropriate. We may also conclude that the treatment goal should be the induction of early remission in order to limit the risk of future bleeds and the need for additional therapies.

In addition, psychological and social support should be offered to all patients with immune thrombocytopenia. One way to offer this is to involve counselors/social workers who can offer non-medical guidance on how to navigate work/social difficulties. In this setup, strong lines of communication between medical and non-medical professionals should be established. 

Another way to relieve the psychological burden of patients with immune thrombocytopenia is to ensure that they are satisfied with the amount of information/communication they are receiving. This study indicates that physicians and patients largely agree on the quality of the physician-patient relationship and the treatment goals set. 

“To improve management of [immune thrombocytopenia], we should move from treating all patients in the same way to more individualized treatment,” Terrell et al wrote. “Individualized treatment plans should be based on predicted or current bleeding severity, clinical course, [health-related quality of life], and the probability of biological markers of response.” 


Terrell DR, Neunert CE, Cooper N, et al. Immune thrombocytopenia (ITP): current limitations in patient managementMedicina (Kaunas). Published online November 30, 2020. doi:10.3390/medicina56120667

Cooper N, Kruse A, Kruse C, et al. Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): impact of ITP on health-related quality of lifeAm J Hematol. Published online October 27, 2020. doi:10.1002/ajh.26036