Immune thrombocytopenia: The patient's perspective

Abstract

Immune thrombocytopenia (ITP) is a rare heterogeneous autoimmune bleeding disorder that causes a lower than normal circulating platelet count resulting from impaired platelet production and accelerated platelet destruction. Patients with ITP face a complex set of challenges. The multifaceted burden of living with ITP impacts the overall health-related quality of life (HRQoL) of patients and their families. Here, we review the patients' perspective on unmet needs, and the physical and emotional burden of disease in an attempt to highlight areas where healthcare providers treating ITP can enhance their current approach to managing a patient with this rare disease. Patients want their voices heard and their experiences with ITP acknowledged beyond simply treating the platelet count. Unmet needs identified include knowledge and communication deficiencies, the need for diagnostic improvements, access issues to the most appropriate treatments, and awareness of the extent to which ITP impacts HRQoL both on physical and mental health. ITP leads to fatigue, challenges with daily activities, reduced physical functioning, anxiety, and depression. Aside from the constant risk for serious bleeding, patients experience both physical and emotional consequences living with their disease on a daily basis. Further studies are needed to clarify the nature and source of pain, anxiety, depression, and fatigue reported in both adults and pediatric patients living with ITP.