IMPACT OF SICKLE CELL DISEASE SYMPTOMS ON PATIENTS' DAILY LIVES IN THE US - PATIENTS FROM THE SICKLE CELL WORLD ASSESSMENT SURVEY (SWAY)

Author(s)

Osunkwo I¹, Andemariam B², Inusa B³, El Rassi F⁴, Nero A⁵, Minniti C⁶, Arlet JB⁷, Colombatti R⁸, Jain S⁹, Jastaniah W¹⁰, Nur E¹¹, Bailey T¹², Rajkovic-Hooley O¹², DeBonnett L¹³, James J¹⁴
¹Sickle Cell Disease Enterprise at The Levine Cancer Institute/Atrium Health, Charlotte, NC, USA, ²New England Sickle Cell Institute, Division of Hematology-Oncology, Neag Comprehensive Cancer Center, UCONN Health, University of Connecticut, Farmington, CT, USA, ³Paediatric Haematology, Evelina Children's Hospital, Guy's and St Thomas' Hospital, London, UK, ⁴Department of Hematology and Medical Oncology, Emory University School of Medicine and Georgia Comprehensive Sickle Cell Center at Grady Health System, Atlanta, GA, USA, ⁵University of Texas Southwestern Medical Center, Dallas, TX, USA, ⁶Montefiore Health System, Albert Einstein College of Medicine, New York, NY, USA, ⁷Hôpital Européen Georges-Pompidou, Paris, France, ⁸Clinica di Oncoematologia Pediatrica, Dipartimento della Salute della Donna e del Bambino Azienda Ospedaliera, Università di Padova, Padova, Italy, ⁹Thalassemia And Sickle Cell Society, Hyderabad, India, ¹⁰College of Medicine, Umm Al-Qura University, Mecca, Saudi Arabia, ¹¹Department of Clinical Hematology, Academic Medical Center, Amsterdam, Netherlands, ¹²Adelphi Real World, Bollington, CHE, UK, ¹³Novartis Pharmaceuticals Corporation, East Hanover, NJ, USA, ¹⁴Sickle Cell Society, London, UK

OBJECTIVES
: Sickle cell disease (SCD) is characterized by vaso-occlusive crises (VOCs), resulting in acute and chronic pain, which have a significant impact on patients’ lives. The SWAY survey assessed the impact of SCD on patients.

METHODS
: SWAY was a cross-sectional survey of SCD patients aged 6 and above and treating HCPs across 16 countries. Surveys were self-complete or proxy surveys assessing demographics, symptoms, VOC burden and impact on activities of daily living (ADLs) and finances. Patient were enrolled via treating HCPs and patient association groups. Here we report US patient data.

RESULTS
: The survey included 384 US SCD patients, 61% female, mean (SD) age 30.1 (13.4) years. Most patients (96%) experienced ≥1 VOC in the 12 months before survey completion (mean 7.1, SD 5.7); 59% experienced ≥5 VOCs. Of all VOCs, 52% resulted in overnight hospitalization, 22% were managed at home, 13% were treated in ER, 13% were treated by pharmacist, GP or specialist. Chronic pain was present on average 4.0 (SD 1.98) days per week.

When rated on a 7-point scale (scores of 5-7 indicate ‘high impact’), 49% of patients reported a high negative impact of SCD on ADLs. Overall, 36% were on disability, 25% part/full-time employed, 24% unemployed, 12% students, 3% other. Employed patients reported a high impact on work, with 76% reducing hours and 58% been made to stop working. In the 7 days before survey completion, patients missed an average 7.3 (SD 10.56) hours’ work. A high degree of presenteeism (40.4%) and absenteeism (20.6%) was reported, in addition to a high overall work impact (50.2%).

CONCLUSIONS
: These data demonstrate SCD has a substantial impact on patients’ ADLs and ability to work. Furthermore, VOCs frequently resulted in hospitalizations demonstrating wider economic burden. Improved SCD management would enhance patients’ quality of life at home and work with wider positive economic effects.

Conference/Value in Health Info

2020-05, ISPOR 2020, Orlando, FL, USA

Value in Health, Volume 23, Issue 5, S1 (May 2020)

Code

PRO82

Topic

Patient-Centered Research

Topic Subcategory

Patient Behavior and Incentives, Patient-reported Outcomes & Quality of Life Outcomes, Stated Preference & Patient Satisfaction

Disease

Rare and Orphan Diseases

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