Costs of Treating Uncomplicated Sickle Cell Complications in a Day Hospital Setting in Equatorial Africa

The emerging understanding of sickle cell disease.

Characterization of Medical Conditions of Children with Sickle Cell Disease in the United States: Findings from the 2007-2018 National Health Interview Surveys (NHIS)

On March 12th 2021 the Italian Government decided to implement a national lockdown in almost all the regions of the country. It was the second most severe measure taken after the March 2020 national lockdown, due to the rising of coronavirus disease 2019 (COVID-19) cases and the overcrowding of the hospitals. The first peak of 29 000 hospitalised individuals, including children, except those in intensive care units (ICUs) was recorded in April 2020. Most hospitals had to rapidly implement strategies to ensure care for non-COVID-19 patients. The majority of children with sickle cell disease (SCD) live in the Northern regions of Italy. Therefore, the dramatic scenario represented an opportunity to explore the challenges presented for children with SCD who lived in Italy during the first outbreak, so that the lessons learned could be used to guide clinical management in the upcoming months.

Management Strategies and Satisfaction Levels in Patients with Sickle Cell Disease: Interim Results from the International Sickle Cell World Assessment Survey (SWAY)

Growing Up With Sickle Cell Disease: Hospital Medicine and Health Care Transitions.

Young adults with sickle-cell disease have increased emergency department (ED) utilization and increased risk of mortality for unclear reasons. Emergency Department Reliance (EDR) differentiates excessive ED use due to increased need in chronic illness from increased use due to limited access to outpatient care. A higher EDR has been used to define excessive reliance on the ED and thus access to care issues leading to increased ED utilization. We conducted a retrospective cohort study of sickle-cell disease patients within the Wisconsin Medicaid database over a 5-year period to examine EDR during the transition period from childhood to adulthood. The study population included four distinct groups: (1) children, (2) patients transitioning from pediatric to adult providers, (3) young adults, and (4) adults age 31-45. Rates of visits per year were calculated for ED visits and outpatient visits for all diagnoses and sickle-cell disease-related diagnoses. Overall, we found increased EDR among the transition group and young adults compared to children and adults for sickle-cell disease-related diagnoses. These findings suggest access to care issues play a significant role in the increased ED utilization seen during the transition period from pediatric to adult providers in sickle-cell disease.

The Increased Burden of Sickle Cell Disease in Italy: Findings from the Greatalys (Generating Real world Evidence Across ITALy In SCD) Study

Targeting Transition: a Novel Partnership with Family Medicine to Enhance Quality of Care and Outcomes for Adolescents and Young Adults with Sickle Cell Disease

Sickle Cell Disease (SCD) As a Risk for COVI19 Compared to Those without SCD Among Patients Admitted in a Large Urban Center, As Estimated By PCR Sars-v-2 Positive Vs Negative Testing

Purpose: Sickle cell disease (SCD) has a substantial emotional and physical burden on patients and their caregivers. Research on the impact of SCD on patient and caregiver quality of life (QOL) is limited, including on the health inequalities faced by different groups around the world. The limitations in research underscore the need for greater understanding of the challenges of living with SCD in different communities. The SHAPE survey aims to broaden the understanding of the global impact of SCD on patients living with the condition, on caregivers caring for those living with the condition, and on healthcare professionals (HCPs) who treat SCD. Materials and methods: The SHAPE survey comprised online, quantitative surveys of patients, caregivers, and HCPs conducted in 10 countries: France, Germany, UK, US, Canada, Brazil, Saudi Arabia, United Arab Emirates, Bahrain, and Oman (patients only). The surveys required participants to answer a range of closed-ended questions about their circumstances and experiences in order to build a robust and reliable dataset on which descriptive statistics were performed. This analysis focuses on findings from the patient and caregiver survey portion of the study. Patients were included if they were diagnosed with SCD by an HCP and were aged ≥12 years. Caregivers were included if they were caring for someone diagnosed with SCD and were aged ≥18 years. Informed consent was obtained from all participants, and all identifiable information was kept private and secure. The study protocol was reviewed and approved by an independent institutional review board. Results: A total of 919 patients and 207 caregivers completed the survey. The mean patient age was 32.3 years, and most patients and caregivers were female. Nearly all patients stated that reducing the risk of long-term complications, such as organ damage (93%) and hemolytic anemia (84%), was important to them (Figure). Caregivers felt that most areas of their lives—particularly their ability to attend and succeed at school or work (56%) and their own overall wellbeing (53%) and mental health (52%)—were impacted by caring for someone with SCD. The symptom experienced by patients with SCD that most impacted caregivers’ lives was fatigue/tiredness (49%), and 54% of caregivers reported a notable impact on their earning potential. Those caring for patients aged <18 years were more likely to have their ability to attend and succeed at school or work impacted than those caring for patients aged ≥18 years (61% vs 38%, respectively). A total of 46% of patients and 33% of caregivers reported that emergency room (ER) HCPs did not believe patients about their symptoms, and 48% of patients felt they were treated as a drug seeker by ER HCPs. Similarly, 54% of patients and 40% of caregivers reported ER HCPs provided poor care due to their lack of knowledge about SCD. Conclusion: The experience of a global group of patients with SCD shows that what most impacted caregivers’ lives was fatigue/tiredness and loss of earnings and this provides insight on the broad impacts of SCD and highlights areas that need greater support or improvement.Figure. Percentage of Patients or Caregivers Who Agreed With or Endorsed the Following Statements I. ODAME declares a conflict of interest: Consultancy, Expert: Novartis, Novo Nordisk, Global Blood Therapeutics F. COSTA declares a conflict of interest: Consultancy, Expert: Novartis;GBT B. INUSA declares a conflict of interest: Consultancy, Expert: Novartis Ltd Global therapeutics Vertex Agios Invitation to national or international congresses: European Hematology Association Sickle cell disease association of America Mumbai international haematology National blood transfusion Society Nigeria Patent or product inventor: none Research support/Scientific studies: Horizon 2020 ARISE (African Reserach and Innovative Initiative for Sickle cell education) Paget foundation Trainings, Teaching: academy for sickle cell and thalassaemia (ASCAT) W. JASTANIAH declares a conflict of interest: Consultancy, Expert: Novartis, Amgen, Servier Research support/Scientific studies: Novartis, Amgen

Cancer and Sickle Cell Disease (SCD): Predictors of Incident Cancer and Survival Compared to Non-SCD Patients in California

Creating Sibling Donors for Hematopoietic Cell Transplantation in Sickle Cell Disease: A Study of Patient and Caregiver Views.

A Five-Year Experience of a Short Stay Observation Unit in Saudi Arabia

Accuracy of ICD-9 Coding for SCD in Children and Adolescents: Results from the Georgia (GA) Rush Surveillance Project

Electronic Health Record Based Sickle Cell Disease Registry Facilitates Targeted Outreach to Improve Access to Care