Access to Care and Therapy for Kawasaki Disease in the Arab Countries: A Kawasaki Disease Arab Initiative (Kawarabi) Multicenter Survey:

Abstract

Kawasaki Disease (KD) is still the most common acquired heart disease in children below the age of five years; it has been well described in the developed world; however, data from the Arab world are limited to case reports or single-center case series. In an effort of optimizing KD research in the Arab world, a group of physicians and researchers established the KD Arab Initiative (Kawarabi) in 2021, and published the first survey, which showed disparities in the availability of intravenous immunoglobulin (IVIG); this had prompted Kawarabi to assess the access to care and therapy of KD patients in Arab countries. A 32 structured questions survey was conducted in thirteen Arab countries and addressed KD patients’ access to healthcare in urban and rural settings. The survey results showed that access to care was uniform across large, mid-size cities and rural areas in 7/13 (54%) countries, while in 6/13 (46%) countries, it was in favor of large and mid-size cities over rural areas. The quality of medical services received by children with KD in large cities was rated as excellent in 6/13 or good in 7/13 countries compared to fair in 4/13 or poor in 4/13 countries in rural areas. Availability of IVIG was limited (23%) in mid-size cities and almost impossible (23%) in rural areas. The KD patients in mid-size cities and rural areas have limited access to standard healthcare in the Arab world. This survey laid the foundation for future Kawarabi endeavors to improve the care of children with KD.

Kawarabi: Administrative Structuring of a Multicenter Research Collaborative to Study Kawasaki Disease in the Arab Countries

“…13 The second article published in May 2023 showed that ease of access to care favored large and mid-size cities over rural areas in almost half of the surveyed member countries of Kawarabi . 14 Four virtual educational webinars moderated by national and international leaders in the field of KD have been held to address the epidemiology of KD and MIS-C in various Arab countries and were well attended by approximately 100 participants per webinar.…”

“…There are significant practice variations in the management of KD, a low level of awareness of the disease in the general population, and access to care favors large to mid-size cities over rural areas in close to half of the participating countries. 13,14 Ease of access to IVIG differs between institutions. 13 The lack of readily available IVIG combined with low awareness of the disease in the general population can potentially lead to underdiagnosis, delay treatment, and subsequently increase the risk of coronary artery aneurysms.…”

“…The active engagement of Kawarabi members during virtual webinars, the inaugural yearly meeting, as well as the publication of two manuscripts 13,14 proves promising for the conduct of nested clinical trials on KD within the collaborative in the future. Clinical trials for rare diseases similar to KD and MIS-C require a collaborative multicenter approach as is evident in the trial investigating the role of etanercept and infliximab as an adjunct therapy for KD.…”