Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Abstract

Recently, the patient-centered medical home (PCMH) emerged as a viable method to improve delivery of medical care. Due to all the promotion about the effectiveness of the PCMH, patients with sickle cell disease, their families and the community hoped that this could be a possible solution to the problems that arise in the treatment of adult patients with sickle cell disease. Review of the literature and review of the criteria for the establishment of a PCMH show that the PCMH is not an ideal model for patients with sickle cell disease because finding a personal physician, which is the first criteria of a functional PCMH, is a major problem in the process of transitioning the care of patients with sickle cell disease from pediatrics to adult care. Moreover, garnering hospital support to defray the initial costs to establish a PCMH for adults with sickle cell disease is unlikely given the already high costs of care for patients with sickle cell disease. Moreover, recent studies have shown insufficient evidence to determine the presumed beneficial effects of the PCMH, especially in patients with chronic disease.

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

“…There were health system barriers that were particularly encountered during the transition from pediatric to adult care. These findings are consistent with previous reports that have found fewer interdisciplinary 46,47 Furthermore, adult care providers were less willing to accept adults with SCD because of the complexity of their management, for which the providers did not have the necessary expertise. 3,[48][49][50] In addition, both adolescents and adults with SCD and primary care providers highlighted the inadequacies of the current system in addressing the chronic pain needs of this population.…”

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

“…These findings are consistent with previous reports that have found fewer interdisciplinary services available in the adult care settings compared with pediatrics. 46,47 Furthermore, adult care providers were less willing to accept adults with SCD because of the complexity of their management, for which the providers did not have the necessary expertise. 3,[48][49][50] In addition, both adolescents and adults with SCD and primary care providers highlighted the inadequacies of the current system in addressing the chronic pain needs of this population.…”

The ASPHO 2019 distinguished career award goes to Dr. Elliott P. Vichinsky

“…Seminal articles on studies he led or contributed mightily to include demonstrating that newborn screening for SCD prevented deaths, phenotypic matching for red blood cell antigens as necessary to prevent alloimmunization, preoperative transfusion in SCD, and causes and outcomes of acute chest syndrome . Many other important studies and observations have contributed to our knowledge of the natural history and pathophysiology of hemoglobinopathies, interventions, and management of complications . He recently published a large multicenter randomized controlled trial demonstrating the benefit of L‐glutamine in decreasing the rate of acute vaso‐occlusive pain in SCD.…”

“…4 Many other important studies and observations have contributed to our knowledge of the natural history and pathophysiology of hemoglobinopathies, interventions, and management of complications. [5][6][7][8][9][10][11][12][13][14][15] He recently published a large multicenter randomized controlled trial demonstrating the benefit of L-glutamine in decreasing the rate of acute vaso-occlusive pain in SCD. L-glutamine is only the second Food and Drug Administration-approved therapy for SCD.…”