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Osunkwo, I.1; Abboud, M.2; Andemariam, B.3; Arlet, J.-B.4; Colombatti, R.5; de Montalembert, M.6; El Rassi, F.7; Francis-Gibson, B.8; Inusa, B.9; Jain, S.10; Jastaniah, W. J.11; Minniti, C.12; Nero, A.13; Nur, E.14; DeBonnett, L.15; Waller, J.16; James, J.17

doi: 10.1097/01.HS9.0000567668.61996.c4
Publication Only: Sickle cell disease

1The Levine Cancer Institute & Carolinas HealthCare System, Charlotte, United States

2American University of Beirut Medical Centre, Beirut, Lebanon

3University of Connecticut Health Center, Farmington, United States

4Hôpital Européen Georges-Pompidou, Paris, France

5Azienda Ospedaliera-Università di Padova, Padova, Italy

6Hôpital Universitaire Necker-Enfants Malades, Paris, France

7Emory University School of Medicine, Atlanta

8Sickle Cell Disease Association of America, Inc, Baltimore, United States

9Evelina Children's Hospital, London, United Kingdom

10Thalassemia and Sickle Cell Anaemia Society (TSCS), Hyderabad Telangana, India

11Princess Noorah Oncology Center, Jeddah, Saudi Arabia

12Montefiore Medical Center, Bronx

13UT Southwestern Medical Center, Dallas, United States

14Academic Medical Center, Amsterdam, Netherlands

15Novartis Pharmaceuticals Co., East Hanover, NJ, United States

16Adelphi Real World, Manchester

17Sickle Cell Society UK, London, United Kingdom

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Sickle cell disease (SCD) is the most common single-gene disorder, affecting millions of people worldwide. SCD is common among people in Africa, Mediterranean countries, Middle East, India, Caribbean, and parts of South and Central America. Widespread global human population movement has led to increasing burden of SCD in Western non-endemic countries as well. SCD is characterized by a wide range of acute (vaso-occlusive painful crisis, acute chest syndrome, stroke) and chronic (nephropathy, pulmonary hypertension) symptoms, resulting in poor quality of life (QOL) and reduced life expectancy. Access to optimal treatment is a key challenge for many SCD patients. In many cases, patients are treated in acute care centers where knowledge of SCD management may not be optimal. The burden of SCD in patients' daily lives, particularly the psychological impact on the lives of young people, is largely underestimated and can impact successful management of SCD, including vaso-occlusive pain crises. Limited treatment options to manage this complex condition and prevent long-term organ damage may lead to frustration and breakdown of communication between patient and health care provider (HCP).

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To conduct a world-wide survey to explore and describe the impact of SCD on patients' QOL (including emotional functioning and fatigue), economic burden, and physician and patient perceptions of overall disease management and treatment approaches. The survey will also describe the interaction between patients and healthcare systems and availability of resources to support disease management in 4 continents.

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SWAY is a multi-country cross-sectional survey of SCD patients, caregivers, and treating physicians being conducted in approximately 15 countries across North and South America, Europe, Africa, Asia, and the Middle East. SWAY will consist of 3 separate surveys: patient, proxy (conducted by the parent/guardian/caregiver), and physician. The surveys will be conducted in a variety of formats (online and print) and distribution will be tailored for countries' characteristics and languages. Questions were developed with input from international SCD experts to appropriately address cultural differences and international variations in care. Following a series of screening questions, surveys include 6 categories: demographics, symptoms, impact of disease and use of a caregiver, impact on work and finances, disease management and treatment approaches, and patient-physician relationship. The patient survey includes 2 additional categories: patient education level/engagement and caregiver-/guardian-/parent-specific questions. Patient recruitment will be conducted via treating physicians and engagement with patient association groups. Target enrollment is ˜2,000 patients.

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SWAY began in March 2019 and is currently ongoing. Approximately 50% of target enrollment (1,000 survey responses) will be completed by May 2019, with survey completion and full results available by July 2019.

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In times of population movement, disease globalization, and interconnection between health care systems, global analyses of disease burden are necessary to provide meaningful solutions. SWAY aims to elucidate the burden of SCD on patient QOL, as well as the alignment between patient and physician perceptions of SCD treatment, management at a global level. This survey is geared to highlight areas of disconnect and inform further research on patient-physician communication and shared decision making. Sponsored by Novartis.

Copyright © 2019 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the European Hematology Association.