Presentation of children with advanced retinoblastoma for treatment in Ghana: the caretakers' perspectives.

BACKGROUND: Retinoblastoma, the commonest childhood malignant intraocular tumour, is diagnosed late, with less than 50% survival in developing countries, including Ghana.

OBJECTIVES: To determine, from caretakers' perspective, contributing factors to late presentation of children with retinoblastoma.

METHODS: A cross-sectional study involving questionnaire administration to consenting caretakers of consecutive children diagnosed with advanced retinoblastoma at the Eye Unit, Korle-Bu Teaching Hospital, Accra, Ghana, from September 2008-June 2011. Clinical diagnosis was confirmed by CT scan or ultrasonography. Ethical approval was granted by University of Ghana Medical School.

RESULTS: Forty caretakers aged 22-58 years (mean = 32.8 ± 7.8yrs) were interviewed. Twenty-four (60%) were females, 36(90%) were parents. Thirty-two (80%) had at least primary level of education. Initial symptoms noticed by caretakers were: white spot 35(87.5%), redness 3(7.5%), proptosis 1(2.5%) and squint 1(2.5%). Thirty-five caretakers (87.5%) sought prior treatment between 1-24 months (median=1month) and 7(37%) beyond 3months, mainly from health/eye centres 34(85%). Six caretakers (15.4%) knew their children had cancer, 11(27.5%) had heard about retinoblastoma, but only 2(5.0%) knew treatment existed. Thirty-two caretakers (80%) would accept enucleation with prosthesis and 17(42.5%) without it. Cost: 8(20% respondents) and lack of awareness of prognosis of retinoblastoma 12(30% respondents) were stated as important factors though they did not prove significant. Caretakers' level of education, occupation and gender had no significant association with knowledge about retinoblastoma, awareness of treatment or cure, acceptance of enucleation with or without prosthesis, nor awareness of prognosis without treatment, p>0.05.

CONCLUSION: Low awareness of the cause, treatment and prognosis of retinoblastoma exists among caretakers of children with advanced retinoblastoma. This may contribute to the late stage of the disease presentation.