Immune thrombocytopenia (ITP) World Impact Survey (iWISh): Patient and physician perceptions of diagnosis, signs and symptoms, and treatment

Abstract

Immune thrombocytopenia (ITP) is now well-known to reduce patients' health-related quality of life. However, data describing which signs and symptoms patients and physicians perceive as having the greatest impact are limited, as is understanding the full effects of ITP treatments. I-WISh (ITP World Impact Survey) was an exploratory, cross-sectional survey designed to establish the multifaceted impact of ITP, and its treatments, on patients' lives. It focused on perceptions of 1507 patients and 472 physicians from 13 countries regarding diagnostic pathway, frequency and severity of signs and symptoms, and treatment use. Twenty-two percent of patients experienced delayed diagnosis (caused by several factors), 73% of whom felt anxious as a result. Patients rated fatigue among the most frequent, severe symptom associated with ITP at diagnosis (58% most frequent; 73% most severe), although physicians assigned it lower priority (30%). Fatigue was one of the few symptoms persisting at survey completion (50% and 65%, respectively) and was the top symptom patients wanted resolved (46%). Participating physicians were experienced at treating ITP, thereby recognizing the need to limit corticosteroid use to newly-diagnosed or first-relapse patients and espoused increased use of thrombopoietin receptor agonists and anti-CD20 after relapse in patients with persistent/chronic disease. Patient and physicians were largely aligned on diagnosis, symptoms, and treatment use. I-WISh demonstrated that patients and physicians largely align on overall ITP symptom burden, with certain differences, for example, fatigue. Understanding the emotional and clinical toll of ITP on the patient will facilitate shared decision-management, setting and establishment of treatment goals and disease stage-appropriate treatment selection.

FIGURE 1

(A) Patient perception at diagnosis, and (B) time of survey completion and (C) physician perception overall of occurrence and severity of ITP signs and symptoms. *Patients reported symptom severity on a 7‐point Likert scale where 1 = not severe at all and 7 = worst imaginable. The data presented are for”severe” based on scores ≥5. Severity of each symptom was only rated if patients stated that they had experienced it at the time of ITP diagnosis and survey completion. ^†Physicians (n = 472) reported the top five symptoms they most frequently heard from patients and reported symptom effect on patients' QoL on a 7‐point Likert scale where 1 = not at all and 7 = a great deal. Data presented are for scores ≥5. ITP, immune thrombocytopenia; QoL, quality of life [Color figure can be viewed at wileyonlinelibrary.com]

FIGURE 2

(A) Physician perception of their patients' severity of fatigue, and (B) likelihood of fatigue by platelet group. *Physicians reported perceived severity of fatigue on a 7‐point Likert scale where 1 = low level and 7 = completely.^†Physicians reported likelihood of fatigue on a 7‐point Likert scale where 1 = not at all and 7 = very likely [Color figure can be viewed at wileyonlinelibrary.com]

FIGURE 3

Treatment prescribed by physicians following relapse of ITP. ITP, immune thrombocytopenia; IVIg, intravenous immunoglobulin; TPO‐RA, thrombopoietin receptor agonist [Color figure can be viewed at wileyonlinelibrary.com]