Utilization, trust and satisfaction with health care in adult sickle cell disease patients

Abstract

Introduction: Transition from pediatric to adult care for emerging adults with sickle cell disease (SCD) has been challenging due to limited availability of experienced adult providers and patient difficulty navigating the adult health care system. The purpose of this study was to determine among adults with SCD, healthcare utilization and their trust and satisfaction with their health care provider. Methods: We surveyed adult patients greater than 21 years old with SCD previously transitioned from Children's Hospital Los Angeles. Assessments of provider trust and satisfaction were conducted along with health care utilization and the transition experience. Results: Of 31 participants, 61% and 68% identified having an adult primary care provider (PCP) and adult hematologist respectively. Increased satisfaction with care was associated with increased trust in the adult hematologist (r=0.72 p<0.001) and PCP (r=0.76 p=0.001) and improved communication (p< 0.001). Trust in their hematologist was greater than PCP (76.5 vs 64.2, p = 0.058). For SCD complications, 65% of participants visited the ED, 80% of whom had negative experiences including sub-optimal pain management. Regarding transition experience, 55% felt unprepared for adult care. Discussion: More than 30% of adult SCD patients transferred out of pediatric care are not receiving regular hematology care for their SCD, resulting in fragmented medical care. Increased trust in their adult hematologist and clear communication are associated with higher levels of satisfaction with care. These findings will be utilized to develop a transition program to improve patient preparation and build on partnerships with adult providers to improve long-term outcomes. Introduction: Sickle cell disease (SCD) is one of the more common genetic conditions. It is characterized by intermittent exacerbation of vaso-occlusion by sickled red blood cells, leading to complications such as painful crisis, acute chest syndrome, stroke, and premature death. There are approximately 100,000 patients with this disease in the United States and as a result of its genetic predisposition, it disproportionately affects those of African and Hispanic descent. 1,2 With newborn screening, vaccinations, prophylactic antibiotics, and hydroxyurea, the mortality in children with SCD decreased by 68% from 1983 to 2002. 3,4 As a result, more than 90% of patients are living to age 20 and the median survival has increased, now 58 years of age in patients with hemoglobin SS or S-beta thalassemia zero and 66 years of age in hemoglobin SC or S-beta thalassemia plus disease. 5 However, studies have shown that morbidity and mortality increases dramatically in the 18-30 year old population, immediately after patients are transitioned from pediatric to adult centered care. 6,7 Transition of care for patients with rare, genetic conditions, like SCD, whose manifestations start early in childhood has additional layers of complexity due to the limited availability of adult specialists with the necessary domain expertise t...

Clients’ satisfaction with pain management by healthcare providers during sickle cell crisis in selected health facilities in Ogun State Nigeria – a cross sectional study

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Toward a Conversational Agent to Support the Self-Management of Adults and Young Adults With Sickle Cell Disease: Usability and Usefulness Study

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