![]() 4 Moreover, 79% of patients consult more than 1 physician before receiving a diagnosis, and of these patients, approximately 38% see 5 or more different physicians across different specialties, such as primary care physicians, hematologists, obstetrician-gynecologists, urologists, mental health specialists, pulmonologists, and neurologists. 3, 4 Fewer than 40% of patients with PNH receive their diagnosis within 12 months of symptom onset, and 24% of all PNH diagnoses can take 5 years or longer. 2 According to an online survey of 163 patients with PNH, on average, it takes close to 2 years and often multiple providers to correctly diagnose PNH. 1 As a result of the multifactorial symptoms of PNH, many patients experience a lengthy and complex path to diagnosis. Paroxysmal nocturnal hemoglobinuria (PNH) is multisystemic with nonspecific symptoms and clinical manifestations due to intravascular hemolysis, thrombosis, and bone marrow failure. Transfusion dependence has a negative effect on HRQOL is associated with risks and complications, including iron overload and results in lost productivity due to travel times to and time spent at infusion centers. Among patients with anemia who are transfusion dependent, the burden of transfusion is considerable. In particular, thrombosis is associated with significant impairments in physical and social functioning and global health status and significant fatigue. In PNH disease management, patients and care providers focus on risk of organ failure and mortality related to disease progression nonetheless, patients’ health-related quality of life (HRQOL) is largely affected by extensive treatment requirements and nonfatal complications of disease, such as fatigue. Diagnostic delay is a source of distress and can affect emotional well-being for patients with PNH. Fewer than 40% of patients with PNH receive a diagnosis within 12 months of symptom onset, and 24% of all PNH diagnoses can take 5 years or longer. ![]() Patients with paroxysmal nocturnal hemoglobinuria (PNH) often experience a lengthy path to diagnosis.
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