Establishment of a formal program for retinoblastoma: Feasibility of clinical coordination across borders and impact on outcome

Abstract

Retinoblastoma is an ocular tumor that occurs in young children, in either heritable or sporadic manner. The relative rarity of retinoblastoma, and the need for expensive equipment, anesthesia, and pediatric ophthalmologic expertise, are barriers for effective treatment in developing countries. Also, with an average age-adjusted incidence of two to five cases per million children, patient number limits development of local expertise in countries with small populations. Lebanon is a small country with a population of approximately 4.5 million. In 2012, a comprehensive retinoblastoma program was formalized at the Children's Cancer Institute (CCI) at the American University of Beirut Medical Center, and resources were allocated for efficient interdisciplinary coordination to attract patients from neighboring countries such as Syria and Iraq, where such specialized therapy is also lacking. Through this program, care was coordinated across hospitals and borders such that patients would receive scheduled chemotherapy at their institution, and monthly retinal examinations and focal laser therapy at the CCI in Lebanon. Our results show the feasibility of successful collaboration across borders, with excellent patient and physician adherence to treatment plans. This was accompanied by an increase in patient referrals, which enables continued expertise development. However, the majority of patients presented with advanced intraocular Abbreviations: CCI, Children's Cancer Institute; EBRT, external-beam radiation therapy; EUA, examination under anesthesia; PFV, persistent fetal vasculature.

Assessment of Retinoblastoma Capacity in the Middle East, North Africa, and West Asia Region

“…Centralized hospitals have also proven to be more cost effective because pediatric oncology resources can be used to treat all cancers and needed ophthalmic infrastructure can be used to care for a greater number of patients. 11 Al-Haddad et al 15 increased patient volume from 20 patients between 2002 and 2011 to 52 patients between 2012 and 2017 by establishing a centralized service with increased referral from neighboring countries. In the case of our assessment, centers within the same city or country should identify one center to treat retinoblastoma and refer accordingly.…”

“…This was modeled by the Children’s Cancer Institute in Beirut, Lebanon, which increased referrals from other centers in Lebanon, Syria, and Iraq after establishment of a program in 2012. 15 Regional hubs, as opposed to remote partners, are more accessible and apt to address cultural barriers, facilitating care of the child. These centers can also build educational capacity throughout the region by identifying themselves as centers of excellence, serving as leaders in the management of retinoblastoma in the region.…”

Global Retinoblastoma Treatment Outcomes

“…10 These grave problems could be addressed when Health Ministries support clinical practice guidelines among all levels of care, led by dedicated RB teams, with eye cancer specialists and skills transfer appropriate for lower income countries. [39][40][41][42] While early detection and prompt enucleation is typically life-saving; the relative lack of stem cell treatment facilities, EBRT and salvage techniques in lower income countries also contribute to the disparity.…”

Knowledge and awareness of the general population and healthcare providers about retinoblastoma: It is time to know the glow

“…In Africa and India, the annual incidence is 6 to 10 cases per 1 million children 1 . In the Middle East, the mean age‐adjusted incidence of retinoblastoma is 9.3, 7.7, and 4.5 cases per 1 million children per year for children younger than 5 years in Jordan, Saudi Arabia, and Lebanon, respectively 8‐11 …”

“…1 In the Middle East, the mean age-adjusted incidence of retinoblastoma is 9.3, 7.7, and 4.5 cases per 1 million children per year for children younger than 5 years in Jordan, Saudi Arabia, and Lebanon, respectively. [8][9][10][11] The 5-year survival rate in developed countries exceeds 90% and reaches nearly 100% in some of these countries; such as the United States and Canada. 2,12 In many middle-income countries (MICs), the survival rate is around 70% and may reach 90% in some countries that have adequate facilities, well-trained staff, and multidisciplinary teams that offer the best possible management for children with retinoblastoma.…”