Providing Primary Care to Children Diagnosed with Myosin Heavy Chain 9-Related Platelet Disorder: A Case Report and Review of Literature

Discussion:The complexity of an inherited hematologic disorder involves multidisciplinary, longitudinal and lifelong care for optimal health care delivery and improved clinical outcomes. When approaching a pediatric patient diagnosed with a rare platelet disorder, the role of a hematologist becomes essential to be the primary care provider and to coordinate specialist visits for the patient without delays. Efficient care coordination with a focus on the patient's needs can avoid unnecessary duplication of tests and services.2 Children affected by rare genetic disorders, such as MYH-9 disorders, have complex unmet health needs and frequently experience unique barriers to care. Longitudinal surveillance is necessary to assess the progress of the MYH9 disease, and supportive care should be provided accordingly.References:Althaus, Karina, Greinacher, Andreas. MYH-9 Related Platelet Disorders: Strategies for Management and Diagnosis. Transfus Med Hemother, 2010Lippe, Charlotte Von Der, et al. "Living with a Rare Disorder: a Systematic Review of the Qualitative Literature." Molecular Genetics & Genomic Medicine, vol. 5, no. 6, 2017, pp. 758-773., doi:10.1002/mgg3.315.DisclosuresNo relevant conflicts of interest to declare.
Source: Blood - Category: Hematology Authors: Tags: 901. Health Services Research-Non-Malignant Conditions Source Type: research