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.

International travel to obtain medical treatment for primary retinoblastoma: A global cohort study.

Early diagnosis and treatment of retinoblastoma (Rb), the most common intraocular malignancy, can save both the child's life and vision. However, access to services and hence chances for survival and preserving the eye and its vision vary widely across the globe. Some families have to, or make a choice to, leave their home country to seek planned medical treatment abroad. We aimed to investigate how frequently this cross-border travel occurs and the factors associated with it. A total of 278 Rb centres in 153 countries were recruited to participate in a global cross-sectional analysis of newly diagnosed Rb patients in 2017. Number and proportions of children who travelled from their home country for treatment were analysed by country, continent, socioeconomic stratum and clinical and demographic features. The cohort included 4351 new patients of whom 223 [5.1%, 95% confidence interval 4.5-5.8] were taken across country borders for planned medical treatment. Independently significant predictors of travelling across borders included: being from a country with a smaller population, being from a country classified as low socioeconomic status, having bilateral Rb and having intraocular disease without extraocular spread. The factors that determine international travel for Rb treatment are complex and deserve further investigation. We may need to rethink the way services are delivered in the light of the threat of severe curtailment of international travel from pandemics like corona virus disease 2019.

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.

Availability of evidence on cataract in low/middle-income settings: a review of reviews using evidence gap maps approach.

BACKGROUND: Despite high-quality evidence being essential for planning and delivering eye health programmes, evidence on what works is relatively scarce. To address this need, we developed eye health Evidence Gap Maps (EGMs) with the first one focusing on cataract. These maps summarise, critically appraise and present evidence in a user-friendly format. This paper presents experiences of developing the cataract gap map and discusses the challenges and benefits of the process. METHODS: Following a comprehensive search of relevant databases, we sifted and extracted data from all relevant reviews on cataract. Critical appraisal was conducted by two reviewers independently using Supported the Use of Research Evidence checklist and a summary quality assessment was shared with the authors for comments. RESULTS: A total of 52 reviews were included in the map. The majority of the reviews addressed quality of clinical care (20) and types of treatment (18). Overall, 30 reviews provided strong evidence in response to the research question, 14 reviews showed weak or no evidence and in 14 reviews the results were inconclusive. 14 reviews were regarded as high quality, 12 were medium quality and 26 were graded as low quality. To verify the validity of the Supporting the Use for Research Evidence (SURE) checklist, studies were also appraised using the Scottish Intercollegiate Guidelines Network (SIGN) tool. Based on the κ statistics test, results showed excellent agreement between the two checklists (K=0.79). DISCUSSION: EGMs support policy makers and programme managers to make informed decisions and enable researchers to prioritise future work based on the most evident gaps on knowledge.