Global Retinoblastoma Study Group IMPORTANCE Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale.OBJECTIVES To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. DESIGN, SETTING, AND PARTICIPANTSA total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. MAIN OUTCOMES AND MEASURESAge at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. RESULTSThe cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low-and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI,, and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI,). CONCLUSIONS AND RELEVANCEThis study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs.
BackgroundThe travel distance from home to a treatment centre, which may impact the stage at diagnosis, has not been investigated for retinoblastoma, the most common childhood eye cancer. We aimed to investigate the travel burden and its impact on clinical presentation in a large sample of patients with retinoblastoma from Africa and Europe.MethodsA cross-sectional analysis including 518 treatment-naïve patients with retinoblastoma residing in 40 European countries and 1024 treatment-naïve patients with retinoblastoma residing in 43 African countries.ResultsCapture rate was 42.2% of expected patients from Africa and 108.8% from Europe. African patients were older (95% CI −12.4 to −5.4, p<0.001), had fewer cases of familial retinoblastoma (95% CI 2.0 to 5.3, p<0.001) and presented with more advanced disease (95% CI 6.0 to 9.8, p<0.001); 43.4% and 15.4% of Africans had extraocular retinoblastoma and distant metastasis at the time of diagnosis, respectively, compared to 2.9% and 1.0% of the Europeans. To reach a retinoblastoma centre, European patients travelled 421.8 km compared to Africans who travelled 185.7 km (p<0.001). On regression analysis, lower-national income level, African residence and older age (p<0.001), but not travel distance (p=0.19), were risk factors for advanced disease.ConclusionsFewer than half the expected number of patients with retinoblastoma presented to African referral centres in 2017, suggesting poor awareness or other barriers to access. Despite the relatively shorter distance travelled by African patients, they presented with later-stage disease. Health education about retinoblastoma is needed for carers and health workers in Africa in order to increase capture rate and promote early referral.
Background To increase access to eye care, the World Health Organization’s Africa Region recently launched a primary eye care (PEC) package for sub-Saharan Africa. To determine the technical feasibility of implementing this package, the capacity of health systems at primary level needs to be assessed, to identify capacity gaps that would need to be addressed to deliver effective and sustainable PEC. This study reports on the human resource and governance challenges for delivering PEC in Anambra State, Nigeria. Methods Design: This was a mixed methods feasibility study. A desk review of relevant Nigerian national health policy documents on both eye health and primary health care was conducted, and 48 primary health care facilities in Anambra state were surveyed. Data on human resource and governance in primary health facilities were collected using structured questionnaires and through observation with checklists. In-depth interviews were conducted with district supervisors and selected heads of facilities to explore the opportunities and challenges for the delivery of PEC in their facilities/districts. Data were analysed using the World Health Organization’s health system framework. Results A clear policy for PEC is lacking. Supervision was conducted at least quarterly in 54% of facilities and 56% of facilities did not use the standard clinical management guidelines. There were critical shortages of health workers with 82% of facilities working with less than 20% of the number recommended. Many facilities used volunteers and/or ad hoc workers to mitigate staff shortages. Conclusion Our study highlights the policy, governance and health workforce gaps that will need to be addressed to deliver PEC in Nigeria. Developing and implementing a specific policy for PEC is recommended. Implementation of existing national health policies may help address health workforce shortages at the primary health care level.
Purpose:To compare the skills and knowledge of clinical ophthalmology among medical interns in Enugu, Nigeria, to the recommendations of the International Council of Ophthalmology (ICO).Materials and Methods:A questionnaire-based cross-sectional survey was conducted of Medical Interns attending the University of Nigeria Teaching Hospital and Enugu State University Teaching Hospital, from April 2010 to June 2010. Data on cohort demographics, undergraduate ophthalmology exposure, clinical skills and diagnostic competencies were collected and analyzed. Statistical significance was indicated by P < 0.05.Results:The cohort comprised 81 males and 48 females (sex ratio = 1.7 : 1), aged 21–35 years (mean: 26.8 ± 2.4 years). The gender difference was significant (P < 0.05). The response rate was 88.7%. The duration of undergraduate ophthalmology exposure ranged from 1 to 4 weeks. Exposure was often adequate in cornea/external eye (95.3%), lens/cataract (95.3%) and glaucoma (92.2%); but not in vitreo-retinal disease (47.3%), neuro-ophthalmology (45.7%) and refractive surgery (0.0). The majority were competent at visual acuity testing (97.7%) and visual field examination (93.0%). There was lower competency at anterior chamber assessment (49.6%) and slit-lamp examination (39.5%). The majority could confidently diagnose conjunctivitis (96.1%) and cataract (90.7%), but not strabismus (42.6%) or macular degeneration (20.2%).Conclusions:Medical interns in Enugu displayed gaps in their undergraduate ophthalmology exposure, clinical knowledge and skills. This has implications for stakeholders in medical education and eye care delivery. Review of the curriculum, provision of training resources and compliance with ICO guidelines could address the deficiencies.
There is a global rise in the prevalence of diabetes and this has led to a rise in the consequences of diabetes such as diabetic retinopathy (DR). The current study aims to determine the prevalence, awareness and determinants of DR among diabetics who attended a screening centre in Enugu, south-eastern Nigeria. A descriptive cross-sectional study was carried out among consenting diabetic patients who visited the centre. An interviewer-administered questionnaire was used to gather information on demographic details, the knowledge of the participants on effects of diabetes on the eye and previous care they had received for their eyes. Each participant underwent eye examination which included posterior segment examination with slit lamp biomicroscopy with +90DS lens after pupil dilation. A total of 80 eligible participants were examined. The prevalence of any DR among the participants was 32.1 % (95 % CI 20.6-43.5) whereas prevalence of proliferative diabetic retinopathy, PDR was 6.4 % and diabetic macular oedema, DME was 31.3 %. Age at onset of diabetes and duration of diabetes were the most determinant factors associated with DR (p = 0.039 and p = 0.000 respectively). Only ten (12.5 %) participants had undergone at least one specific eye examination to check for DR since they were diagnosed with diabetes. The major reason for not having had a prior screening is 'no one referred me for it' (31 participants, 44.3 %). DR is emerging as an important cause of blindness and severe visual impairment. Adequate screening programme and treatment protocol need to be set up for this population even in developing countries to prevent blindness.
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