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

Abstract

Retinoblastoma is the most frequent primary intraocular tumour in childhood. Early detection of retinoblastoma is the key to successful management with a higher chance of survival. This study aims to assess the knowledge of the general population and healthcare providers about retinoblastoma in term of presentation, risk factors, timing for diagnosis, and complications.A cross-sectional study using an online survey was conducted in three Arab countries (Jordan, Saudi Arabia, and Iraq) between 28 August and 16 September 2020.The questionnaire tool was constructed based on an extensive literature review to explore the study's aim and objectives. Logistic regression was used to identify predictors of better knowledge about retinoblastoma.A total of 3676 participants were involved in the study (Jordan = 2654, Saudi Arabia = 604, and Iraq = 418). The average retinoblastoma knowledge score for the whole study population was 6.25 (SD = 4.12) out of 21, representing 29.8% (out of the maximum possible total score). Participants aged above 50 years old, married individuals, those with a secondary education level, those who work as professionals in industry, those who have more than four children, and those who reported that they were not in direct contact with a large number of children were less likely to be knowledgeable about retinoblastoma presentation, risk factors, the timing for diagnosis, and complications (P < .05).Early detection is the cornerstone for decreasing morbidity and mortality among children with retinoblastoma. However, the awareness and knowledge about retinoblastoma are very limited in our study population. Efforts should be directed at increasing awareness of both the general population and healthcare providers regarding retinoblastoma. Policymakers are responsible for improving knowledge and awareness about retinoblastoma to facilitate early detection of the disease by 2 of 11 | NASER Et Al. | INTRODUC TI ONRetinoblastoma is the most frequent primary intraocular tumour in childhood and accounts for about 3% of all malignancies in children younger than 15 years old. 1 It originates from primitive retinoblasts and initiated by biallelic mutation of the retinoblastoma tumour-suppressor gene (RB1 gene) with a tendency towards cone differentiation. 2 In children with retinoblastoma, the most common presenting and warning sign is leukocoria (60%), followed by strabismus (20%). The remaining 20% present atypical signs, including inflammation of the eye or uveitis, ocular neovascularisation, haemorrhage, glaucoma, hypopyon, and orbital cellulitis. 3 However, these signs are considered late signs with a poor prognosis for both globe salvage and survival. 4 In developing countries, the most frequent presenting sign is extraocular involvement with proptosis. 3 The annual incidence of retinoblastoma is one in 15 000 to 20 000 live births, representing about 9000 new cases each year in the world with no gender, ethnic, or geographical predilection. Of those new cases, more than 80% are from low-and middle-incom...