Risk factors associated with abandonment of care in retinoblastoma: analysis of 692 patients from 10 countries.

BACKGROUND: Rates of care abandonment for retinoblastoma (RB) demonstrate significant geographical variation; however, other variables that place a patient at risk of abandoning care remain unclear. This study aims to identify the risk factors for care abandonment across a multinational set of patients. METHODS: A prospective, observational study of 692 patients from 11 RB centres in 10 countries was conducted from 1 January 2019 to 31 December 2019. Multivariate logistic regression was used to identify risk factors associated with higher rates of care abandonment. RESULTS: Logistic regression showed a higher risk of abandoning care based on country (high-risk countries include Bangladesh (OR=18.1), Pakistan (OR=45.5) and Peru (OR=9.23), p<0.001), female sex (OR=2.39, p=0.013) and advanced clinical stage (OR=4.22, p<0.001). Enucleation as primary treatment was not associated with a higher risk of care abandonment (OR=0.59, p=0.206). CONCLUSION: Country, advanced disease and female sex were all associated with higher rates of abandonment. In this analysis, enucleation as the primary treatment was not associated with abandonment. Further research investigating cultural barriers can enable the building of targeted retention strategies unique to each country

Outcomes of paediatric cataract surgery with and without the use of trypan blue.

OBJECTIVE: This systematic review was undertaken to answer the research question: "In children with primary cataracts, what are the outcomes (posterior continuous curvilinear capsulorhexis + posterior chamber intraocular lens implantation) of surgery when performed with and without trypan blue staining of the posterior lens capsule?" METHODS: An electronic search in six biomedical databases was conducted to identify randomised controlled trials that compared trypan blue with no stain during surgery in children 0-16 years with primary cataracts. Titles and abstracts of studies published between 1946 and 2021 in English language were screened. Data extraction, risk of bias assessment and synthesis of findings were done by two independent reviewers, while conflicts were discussed and resolved with a third. RESULTS: A total of 115 of 153 articles were screened after de-duplication. Of these, 113 were excluded while 2 randomised controlled trials involving 56 eyes of 42 participants were included in the review. The risk of bias was similar across all domains in both. Staining of the capsule led to complete posterior capsulorhexis and optimal placement of the implant in >90% of study eyes, while the control arms had 65%-80% for both outcomes. CONCLUSION: Use of trypan blue in paediatric cataract surgery probably leads to better outcomes, but more well-conducted randomised controlled trials on this important topic are needed

Factors influencing the decision-making of carers of children with bilateral cataract in Nepal.

OBJECTIVES: Two hundred thousand children worldwide are blind from cataract. Late presentation for surgery resulting in poor visual outcomes is a problem globally. We aimed to explore the reasons why children are not brought earlier for surgery in Nepal. METHODS AND ANALYSIS: Mixed-method study of carers of children with bilateral cataract attending a large non-government eye hospital were administered a proforma. A random sample took part in semistructured interviews and focus group discussions. RESULTS: Carers of 102 children completed proformas; 10 interviews and 2 focus group discussions were held. 80.4% were Indian, 35.3% of children were female, and their mean age was 58 months (range 4 months to 10 years). Median delay in time between the carer first noticing a problem to presentation was 182 days IQR (60.8-364.8). This was significantly longer for girls (median 304 IQR (91.2-1094.4)) than boys (median 121.6 IQR (30.4-364.8); p=0.02). Cost to access care was a problem for 42 (41.2%) carers. 13 (12.8%) participants were not aware of treatment and 12 (11.8%) were aware but did not seek treatment. The community influenced carer's health-seeking behaviour. Cataract was sometimes described as 'phula', meaning something white seen on the eye. CONCLUSION: Fewer girls presented for surgery, and they also had a significantly longer delay to presentation than boys. Carers are influenced by factors at family, community and socio-organisational levels. Approaches to increase timely access, particularly by girls, are required, such as health education using the term phula, which is widely understood