The implementation of standardized protocols and a multidisciplinary approach improved reporting; discrepancies in disease classification and the amount of missing data were reduced; and quality measures and prognostic capabilities of the team were substantially improved. Such established data-driven practice supports faster decision making to enucleate diseased eyes and save patients' lives through providing measurable indicators.
In Egypt, retinoblastoma patients present more frequently with advanced disease. There is an ever-increasing need to develop a national team dedicated to studying disease significance and formulating a national awareness program.
We conclude that retinoblastoma must be considered in the differential diagnosis of phthisis bulbi in the pediatric patients and active tumor was present in half of the patients.
Research on childhood diseases represents a great global challenge. This challenge is maximized in both childhood cancer disciplines and developing world. In this paper, we aim at describing our institution experience in starting a structured childhood cancer research program in one of the developing countries in a short time based on philanthropic efforts. We used retinoblastoma as an example for what was conducted in this program. Starting in 2008, this program included improving clinical practice and its related supporting services besides developing new research services that both complement the clinical activities and pave the way towards creating a research foundation in the country. Results included developing hospital standard treatment protocols, developing national clinical trials, joining international consortia for childhood cancers clinical trials, developing data collection tools and real-time analytics, establishing a biobanking facility, and developing highly qualified team for conducting clinical, epidemiologic, and translational research studies. Moreover, this effort resulted in improving both clinical practice and patients' awareness nationally. This model can be used for other startup facilities that aim at finding answers for their national health problems in low-resource setting.
Objectives
We aimed to study the clinical state and prognosis of patients with unilateral retinoblastoma who were being treated at a paediatric comprehensive cancer centre in a limited-resource country, to assess the different phases of treatment and the success of different, more complex real-life models.
Subjects
In this retrospective study, we created a snapshot of our retinoblastoma database for the period between 2007 and 2015. Patients whose data were included in the study were followed up until 2016. Out of a total of 744 screened patients, we included data of 248 patients who had been diagnosed with unilateral retinoblastoma.
Results
As classified as per the International Retinoblastoma Classification, 1 patient presented with group A, 21 with group B, 39 with group C, 104 with group D and 83 with group E retinoblastoma. Chemotherapy was the initial line of treatment in 115 patients and enucleation in 133 others. Later, 141 patients (56.9%) required further management. Patients had a mean ocular survival time of 20.8 months. Nine patients developed extraocular disease at a later stage of management: five after upfront enucleation and four after neoadjuvant chemotherapy. Mean overall survival time stood at 90.2 months. Four and three deaths were recorded in groups D and E, respectively. A single patient died in the initial chemotherapy arm, while six passed away in the initial enucleation arm.
Conclusion
Our study highlights the importance of initial chemotherapy and close follow-up after enucleation of classes D and E affected eyes even in absence of germline mutations.
Background
The world as we know it changed during the COVID-19 pandemic. Hope has emerged with the development of new vaccines against the disease. However, many factors hinder vaccine uptake and lead to vaccine hesitancy. Understanding the factors affecting vaccine hesitancy and how to assess its prevalence have become imperative amid the COVID-19 pandemic. The vaccine hesitancy scale (VHS), developed by the World Health Organization (WHO) Strategic Advisory Group of Experts on Immunization, has been modified to the adult VHS (aVHS) and validated in English and Chinese. To our knowledge, no available aVHS has been designed or validated in Arabic or French.
Objective
The aim of this research is to translate the aVHS from its original English language to Arabic and French and validate the translations in the WHO Eastern Mediterranean region.
Methods
The study will follow a cross-sectional design divided into 5 phases. In phase 1, the original aVHS will be forward-translated to Arabic and French, followed by backward translation to English. An expert committee will review and rate all versions of the translations. Expert agreement will then be measured using the Cohen kappa coefficient (k). In phase 2, the translated aVHS will be pilot-tested with 2 samples of participants (n=100): a group that speaks both Arabic and English and another that speaks French and English. Participants’ responses to the English version will also be collected. In phase 3, responses will then be compared. Descriptive statistics and paired t tests or one-way analyses of variance (ANOVA) and Pearson correlation coefficient will be used in the preliminary validation. In phase 4, prefinal versions (Arabic and French) will be tested with larger sample sizes of Arabic speakers (n=1000) and French speakers (n=1000). Sociodemographic information and vaccination status will be collected and used for further analysis. In phase 5, the scale's statistical reliability and internal consistency will be measured using Cronbach alpha. An exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) will be used to examine the model fit resulting from the EFA. ANOVA and regression models will be constructed to control for confounders. All data will be electronically collected.
Results
As of January 2022, the scale had been translated to Arabic and French and was undergoing the process of back translation. All data collection tools have been prepared (ie, sociodemographics, vaccination status, and open-ended questions) and are ready to go into their electronic formats. We expect to reach the desired sample size in this phase by June 2022.
Conclusions
This study will provide researchers with a validated tool to assess adult vaccine hesitancy within populations that speak Arabic and/or French and provide a road map to scale translation and ensure cross-cultural adaptation.
International Registered Report Identifier (IRRID)
PRR1-10.2196/36928
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