Management of Adult Chronic Immune Thrombocytopenia in Japan: Patient and Hematologist Perspectives from a Multi-center Cross-sectional Questionnaire Survey

Abstract

Objective The objective of this study was to explore the perspective of hematologists and their patients regarding the management of adult chronic immune thrombocytopenia (ITP). Methods This was a multi-center, questionnaire-based, cross-sectional study conducted between 2012 and 2013 throughout Japan. Patients Hematologists, members of the Japanese Society of Hematology in 171 institutions, and their patients were invited to participate in this study. The hematologists were mainly asked about their treatment strategies, while patients were asked about their opinion of the applied treatments, treatment effect, impact on their quality of life (QOL), and treatment satisfaction. Results Questionnaires from 204 hematologists and 213 patients were collected. One hundred sixty hematologists (78.4%) started treatment based on the patient's platelet count. Corticosteroids were considered to be the most effective treatment (44.1%). Forty-six percent of hematologists responded that treatment would be started after the platelet count fell below 20×10 9 /L with bleeding symptoms, compared to 62.9% for patients with no bleeding symptoms. A platelet count of 50×10 9 /L or lower was acceptable for 94.0% of hematologists and 66.8% of patients. Fatigue was most frequently experienced by patients (44.6%). Patients also experienced psychological symptoms (feeling of anxiety or depressive mood: 29.1%, labyrinthitis: 23.5%). While 70.6% of hematologists assumed that the patient QOL was impaired to a moderate to substantial degree, the QOL was impaired in 34.3% of patients. Conclusion A substantial gap which exists between hematologists and their patients highlights a need for better understanding of potential conflicts for establishing effective strategies for ITP management.

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

“…The findings of I‐WISh expand on a smaller previous survey of Japanese physicians and patients with ITP 7 that also reported high fatigue occurrence 6‐8 . In I‐WISh, fatigue was one of the top three symptoms (along with bleeding and unstable platelet counts) that patients most wanted resolved.…”

“…4,5 Paradoxically, patients with ITP are at risk of thromboembolic events. 4 Important symptoms often reported by patients when asked, but which can be easily overlooked, involve the effects of ITP on health-related quality of life (HRQoL), including unexplained fatigue (up to 45%), 4,[6][7][8] anxiety or depression (29%), and headache (16%). 7 Corticosteroids, intravenous immunoglobulin (IVIg), and anti-D immunoglobulin are standard first-line treatment options for patients with newly-diagnosed primary ITP.…”

Immune thrombocytopenia (ITP) World Impact Survey (I‐WISh): Impact of ITP on health‐related quality of life

“…However, one patient survey reported only 11% of respondents felt ITP “often or extremely” affected their school or work activities, and only 7% reported non‐occupational activities were adversely affected by their disease 8 . Another survey of patients with ITP and hematologists reported a reverse mismatched perception of disease impact on HRQoL; 9 71% of “ITP‐experienced” hematologists felt patient HRQoL was moderately to substantially impaired, whereas only 34% of patients reported any impairment 9 . These findings may be consistent with a study of more than 400 patients showing that those with chronic ITP (disease duration ≥ 12 months) reported being less affected by ITP than patients with persistent disease (duration of ITP 3‐12 months).…”

Immune thrombocytopenia: improving quality of life and patient outcomes

“…Fatigue was commonly reported by two of the three focus groups. Other studies suggest that fatigue is an issue for 22%–45% of patients with ITP34–36 and fatigue scores have been found to be significantly worse than in controls 16,35. Sleep disturbance, anxiety, depression and fear were frequently mentioned by the focus groups.…”

“…Sleep disturbance, anxiety, depression and fear were frequently mentioned by the focus groups. For example, “The worst part about it is the emotional strain that was put on everyone around me.” In another study, 29% of patients experienced anxiety or depression 36…”