How Do Patients and Physicians Perceive Immune Thrombocytopenia (ITP) As a Disease? Results From Indian Analysis of ITP World Impact Survey (I-WISh)

Abstract Background: Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physician perceptions are regarding ITP-associated symptoms, HRQoL, and disease management in India.Methods: Patients and physicians (hematologists/hemato-oncologists) from India who participated in the global ITP World Impact Survey (I-WISh) were included in this subgroup analysis (survey).Results: A total of 65 patients and 21 physicians were included in this study. Average disease duration from diagnosis-to-survey-completion was 5.3 years. The most severe symptoms reported by patients at diagnosis were menorrhagia (15/19;79%), anxiety surrounding unstable platelet counts (17/28;61%), and fatigue (27/46;59%); these were also the key symptoms they wanted to be resolved. In contrast, physicians perceived petechiae (19/21;90%), bleeding-from-gums [(8/21;86%), and purpura (16/21;76%) as the most common symptoms. While the important treatment goals for patients were healthy blood counts (42/65;65%), improved QoL (35/65;54%), and prevention of worsening of ITP (33/65;51%), physicians’ goals were reduction in spontaneous bleeding (17/21;81%]), better QoL (14/21;67%]), and symptom improvement (9/21;43%). More than half the patients reported that ITP affected their work life/studies, social life, and energy levels, thereby negatively impacting their QoL. Patients were almost entirely dependent on family and friends for support.Conclusions: This survey highlights the substantial discrepancy in patients’ and physicians’ perceptions regarding ITP-associated symptoms and treatment goals in India. Educating physicians on aspects of ITP beyond bleeding, and highlighting patients’ under-recognized symptoms/needs through support-systems may bring about a meaningful change.