Abstract
Background: Immune thrombocytopenia (ITP) is a rare autoimmune disorder resulting in reduced platelet count. The annual incidence is 3.3 per 100,000 adults and 8.8 per 100,000 person-years in children. Immune thrombocytopenia impacts the quality of life, productivity, and psychosocial well-being of patients and caregivers. This quality improvement study aims to characterize needs of patients, caregivers, and health-care providers (HCPs) managing chronic ITP to improve management in the future. Methods: We conducted a two-session Learning Exchange program: one with HCPs and adult patients, and one with HCPs and caregivers of pediatric patients. Discussions encompassed clinical and personal experiences with chronic ITP, the health-care system, and support resources. Session transcripts identified key themes, which participants subsequently prioritized in a post-meeting survey. Results: A total of 7 patients, 6 caregivers, and 14 HCPs participated in the Learning Exchange sessions, discussing challenges in chronic ITP management and areas for improvement. Post-meeting surveys identified shared priorities, ranked as follows: (1) empowering patients to self-advocate; (2) strengthening shared decision-making; (3) improving resources and support; (4) following the evolving treatment landscape; and (5) mental health support. Conclusions: The sessions identified key needs involving improved education for patients, caregivers, and HCPs; improved communication between patients, caregivers, and HCPs; the greater need for self-advocacy and shared decision-making; and the desire for better support resources and networks. This knowledge will enable the development of improved educational resources, support programs, and future research to benefit the chronic ITP community and improve the quality of management of chronic ITP for patients, caregivers, and HCPs.
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