S131: REGIONAL ASSESSMENT OF THE EXPERIENCES OF HEALTHCARE PROFESSIONALS (HCPS) TREATING PATIENTS WITH SICKLE CELL DISEASE (SCD): THE INTERNATIONAL SICKLE CELL WORLD ASSESSMENT SURVEY (SWAY)
Authors: I Osunkwo, B Andemariam, C Minniti, F El Rassi, E Nur, A Nero, R Colombatti, M de Montalembert, M Abboud, J Arlet, S Jain, W Jastaniah, M Pita, C Trimnell, L DeBonnett, T Bailey, O Rajkovic-Hooley, B Inusa, J James
Journal: HemaSphere (2022)

Background: SCD has a high clinical burden, results in poor quality of life (QoL) and reduces life expectancy in many patients (pts). To improve treatment/management, it is important to gain a deeper understanding of pt and HCP experiences. Aims: SWAY was a cross-sectional survey that assessed pt and HCP experiences of SCD. Here we focus on the experiences of HCPs from various regions on SCD symptoms and complications, impact of SCD on QoL, treatment goals and treatment satisfaction. Methods: SWAY was an international cross-sectional survey developed by international expert physicians, pt advocates and Novartis to assess pt and HCP experiences of SCD. Here we focus on the experiences of 365 HCPs who manage ≥10 SCD pts (≥5 in Canada, ≥2 in the Netherlands) and who completed the survey in April–October 2019. Responses to questions on how much SCD impacts pts’ emotional wellbeing, QoL and daily life, as well as HCP treatment satisfaction, were ranked on a Likert scale (1–7: 1=not at all/strongly dissatisfied, 7=a great deal/strongly satisfied; 5–7 indicated high impact/satisfaction). Results: HCPs in all six regions recognized the prevalence of acute and chronic pain (although less frequently in Africa vs other regions; Table). Acute chest syndrome and joint issues were among the five most common complications reported by HCPs in all regions. Globally, HCPs noted the high impact of SCD on emotional wellbeing (71–97%) and of symptoms/complications on QoL (79–100%). Fewer HCPs in the Middle East (ME) reported a high impact of SCD on physical and sexual activity compared with other regions (Figure). Around 40% of HCPs in the ME and Asia thought that SCD has a high impact on daily activities, compared with 77–90% in other regions. In Asia, fewer HCPs reported that SCD has a high impact on pts’ education (48%) and ability to maintain a job (43%) compared with other regions (69–90% and 56–90%, respectively). Hydroxyurea (HU) was among the three most common therapies ever initiated and the therapy most likely to be initiated in any age group by HCPs in all regions except Africa (Table). Improving pts’ QoL was the top treatment goal for HCPs across all regions (51–84%). Fewer HCPs in North America (32%), South America (27%) and Europe (46%) were highly satisfied with current SCD treatments compared with other regions (62–72%); the main reason for dissatisfaction was limited treatment options in all regions except Asia. Summary: The most frequent SCD symptoms/complications that HCPs reported were similar across all regions. However, regional differences in HCP experiences of how SCD impacts pts’ daily life exist (eg fewer HCPs reported a high impact on physical/sexual activity in the ME, on daily activities in the ME/Asia, and on education/work in Asia, vs other regions), which may be explained by cultural variations. HU was one of the three most common prior treatments in all regions except Africa, which may indicate an educational knowledge gap, particularly as the HCPs from Africa who completed the survey were primarily non-specialists. This could also reflect poor access to HU and/or its high cost in Africa. HCPs in most regions were dissatisfied with SCD treatments because of limited options, indicating a global unmet need for additional treatment choices. Improving QoL was the main treatment goal for HCPs in all regions, which may be indicative of a high negative impact of SCD on pt QoL and the ongoing need to address this.