Systematic solutions for the treatment of AL amyloidosis: standardization of recording, improvement of diagnosis, patient pathways and medical education as the basis for care quality

Objective. To characterize care to patients with AL amyloidosis in accordance with current regulations, to analyze survey data from medical specialists on modern care and to identify current issues in medical education regarding diagnosis and treatment of patients with paraproteinemic hemoblastosis. Material and methods. We analyzed regulatory documents and problematic issues in organization of care for patients with AL amyloidosis taking into account expert assessments from chief hematologists in constituent entities of the Russian Federation. Specialists in care for patients with AL amyloidosis were surveyed. Results. Regulatory acts governing care to patients with AL amyloidosis and status of hematologists as primary specialists for pathogenetic therapy were identified. Patient pathways issues were identified, and potential solutions were proposed (creation of regional regulatory documents regulating patient pathways to receive high-quality care). Survey of specialists identified the need for advanced professional program on organization of care, diagnosis and treatment of patients with AL amyloidosis. Conclusion. Improved treatment of patients with AL amyloidosis is possible in case of state funding for expensive diagnosis and therapy. Correct coding of AL amyloidosis cases will enable organization of a patient registry and outcome monitoring, reduce the period between diagnosis and treatment, as well as facilitate patient pathways. It is necessary to develop and implement advanced educational programs for diagnosis and treatment of AL amyloidosis with practice-oriented training for hematologists, pathologists, and specialists in laboratory testing. Multidisciplinary teams, including hematologist, nephrologist and cardiologist, should be formed to ensure timely diagnosis and treatment, including pathogenetic antitumor targeted therapy.