Establishment of a formal program for retinoblastoma

Feasibility of clinical coordination across borders and impact on outcome

Christiane Al-Haddad, Ziad Bashour, Lina Farah, Layal Bayram, Zeina Merabe, Riad Ma'luf, Ramzi Alameddine, Toufic Eid, Fadi Geara, Matthew Wilson, Rachel Brennan, Sima Jeha, Khaled Ghanem, Rasha Al Yousef, Roula Farah, Peter Noun, Nabil Yassine, Adlette Inati, Samar Muwakkit, Miguel Abboud & 3 others Nidale Tarek, Dima Hamideh, Raya Saab

Research output: Contribution to journalArticle

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 disease, necessitating enucleation in 90% of eyes in unilateral cases, and more than 50% of eyes in bilateral cases. Future efforts need to focus on expanding the program that reaches to additional hospitals in both countries, and promoting early diagnosis, for further improvement of globe salvage rates.

Original languageEnglish (US)
Article numbere27959
JournalPediatric Blood and Cancer
DOIs
StateAccepted/In press - Jan 1 2019

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Retinoblastoma
Lebanon
Syria
Neoplasms
Iraq
Laser Therapy
Patient Compliance
Population
Developing Countries
Early Diagnosis
Therapeutics
Referral and Consultation
Anesthesia
Pediatrics
Physicians
Drug Therapy
Equipment and Supplies
Incidence

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology

Cite this

Establishment of a formal program for retinoblastoma : Feasibility of clinical coordination across borders and impact on outcome. / Al-Haddad, Christiane; Bashour, Ziad; Farah, Lina; Bayram, Layal; Merabe, Zeina; Ma'luf, Riad; Alameddine, Ramzi; Eid, Toufic; Geara, Fadi; Wilson, Matthew; Brennan, Rachel; Jeha, Sima; Ghanem, Khaled; Yousef, Rasha Al; Farah, Roula; Noun, Peter; Yassine, Nabil; Inati, Adlette; Muwakkit, Samar; Abboud, Miguel; Tarek, Nidale; Hamideh, Dima; Saab, Raya.

In: Pediatric Blood and Cancer, 01.01.2019.

Research output: Contribution to journalArticle

Al-Haddad, C, Bashour, Z, Farah, L, Bayram, L, Merabe, Z, Ma'luf, R, Alameddine, R, Eid, T, Geara, F, Wilson, M, Brennan, R, Jeha, S, Ghanem, K, Yousef, RA, Farah, R, Noun, P, Yassine, N, Inati, A, Muwakkit, S, Abboud, M, Tarek, N, Hamideh, D & Saab, R 2019, 'Establishment of a formal program for retinoblastoma: Feasibility of clinical coordination across borders and impact on outcome', Pediatric Blood and Cancer. https://doi.org/10.1002/pbc.27959
Al-Haddad, Christiane ; Bashour, Ziad ; Farah, Lina ; Bayram, Layal ; Merabe, Zeina ; Ma'luf, Riad ; Alameddine, Ramzi ; Eid, Toufic ; Geara, Fadi ; Wilson, Matthew ; Brennan, Rachel ; Jeha, Sima ; Ghanem, Khaled ; Yousef, Rasha Al ; Farah, Roula ; Noun, Peter ; Yassine, Nabil ; Inati, Adlette ; Muwakkit, Samar ; Abboud, Miguel ; Tarek, Nidale ; Hamideh, Dima ; Saab, Raya. / Establishment of a formal program for retinoblastoma : Feasibility of clinical coordination across borders and impact on outcome. In: Pediatric Blood and Cancer. 2019.
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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 disease, necessitating enucleation in 90{\%} of eyes in unilateral cases, and more than 50{\%} of eyes in bilateral cases. Future efforts need to focus on expanding the program that reaches to additional hospitals in both countries, and promoting early diagnosis, for further improvement of globe salvage rates.",
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T2 - Feasibility of clinical coordination across borders and impact on outcome

AU - Al-Haddad, Christiane

AU - Bashour, Ziad

AU - Farah, Lina

AU - Bayram, Layal

AU - Merabe, Zeina

AU - Ma'luf, Riad

AU - Alameddine, Ramzi

AU - Eid, Toufic

AU - Geara, Fadi

AU - Wilson, Matthew

AU - Brennan, Rachel

AU - Jeha, Sima

AU - Ghanem, Khaled

AU - Yousef, Rasha Al

AU - Farah, Roula

AU - Noun, Peter

AU - Yassine, Nabil

AU - Inati, Adlette

AU - Muwakkit, Samar

AU - Abboud, Miguel

AU - Tarek, Nidale

AU - Hamideh, Dima

AU - Saab, Raya

PY - 2019/1/1

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N2 - 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 disease, necessitating enucleation in 90% of eyes in unilateral cases, and more than 50% of eyes in bilateral cases. Future efforts need to focus on expanding the program that reaches to additional hospitals in both countries, and promoting early diagnosis, for further improvement of globe salvage rates.

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