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.

Cascading training the trainers in ophthalmology across Eastern, Central and Southern Africa.

BACKGROUND: The Royal College of Ophthalmologists (RCOphth) and the College of Ophthalmology of Eastern Central and Southern Africa (COECSA) are collaborating to cascade a Training the Trainers (TTT) Programme across the COECSA Region. Within the VISION 2020 Links Programme, it aims to develop a skilled motivated workforce who can deliver high quality eye care. It will train a lead, faculty member and facilitator in 8 countries, who can cascade the programme to local trainers. METHODS: In phase 1 (2013/14) two 3-day courses were run for 16/17 selected delegates, by 3 UK Faculty. In phase 2 (2015/16) 1 UK Faculty Member ran 3 shorter courses, associated with COECSA events (Congress and Examination). A COECSA Lead was appointed after the first course, and selected delegates were promoted as Facilitators then Faculty Members on successive courses. They were given appropriate materials, preparation, training and mentoring. RESULTS: In 4 years the programme has trained 87 delegates, including 1 COECSA Lead, 4 Faculty Members and 7 Facilitators. Delegate feedback on the course was very good and Faculty were impressed with the progress made by delegates. A questionnaire completed by delegates after 6-42 months demonstrated how successfully they were implementing new skills in teaching and supervision. The impact was assessed using the number of eye-care workers that delegates had trained, and the number of patients seen by those workers each year. The figures suggested that approaching 1 million patients per year were treated by eye-care workers who had benefited from training delivered by those who had been on the courses. Development of the Programme in Africa initially followed the UK model, but the need to address more extensive challenges overseas, stimulated new ideas for the UK courses. CONCLUSIONS: The Programme has developed a pyramid of trainers capable of cascading knowledge, skills and teaching in training with RCOphth support. The third phase will extend the number of facilitators and faculty, develop on-line preparatory and teaching materials, and design training processes and tools for its assessment. The final phase will see local cascade of the TTT Programme in all 8 countries, and sustainability as UK support is withdrawn.

'Smoke gets in your eyes': a research-informed professional education and advocacy programme.

Smoking is associated with common sight-threatening eye conditions. We suspected that this link was little known and it might be a potent novel health promotional tool. We therefore developed a programme ultimately aiming to reduce the burden of eye disease attributable to smoking. The programme aims were to (1) raise awareness of the link between smoking and eye disease and advocate changes in relevant policies and (2) investigate and promote change in professional practice so that smokers are identified and routinely offered smoking cessation advice/support in eyecare settings. An inter-professional team developed a programme of research and education targeting policy-makers, healthcare professionals, the public and patients. We reviewed evidence about the causal link between smoking and eye disease, researched current awareness of the link, researched current practice of eyecare health professionals, produced health education materials and campaigned for policy changes. The series of projects was completed successfully, achieving media coverage, confirming the causal link between smoking and eye disease and demonstrating low awareness of this association. Healthcare leaders and policy-makers were engaged in our programme resulting in commitment, in principle, from the UK's Chief Medical Officer and the European Commission to consider including warning labels related to blindness on cigarette packets.