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.
A B S T R AC TThis paper describes the implementation of a specific, communitybased, multi-family group (MFG) intervention strategy (Families and Schools Together [FAST] babies) aimed at improving the outcomes for infants of teenage mothers in 11 Canadian communities. The aims of this social work group intervention were (1) to engage the teenage mothers into a socially inclusive experience that might challenge the social disapproval they often experience, (2) to enhance the motherinfant bond, while increasing feelings of parental efficacy, and (3) to enhance the social context of the teenage mother by reducing stress, social isolation and intergenerational family conflict. Groups were co-led by teams of service users (a young mother, a grandmother of the baby of a teenage mother and a father of the baby of a teenage mother) collaborating with multi-agency professionals (health visitors and social workers). Teams that reflected the ethnic diversity of the participating family members were trained to facilitate eight weekly group meetings. They showed respect for the young women's 'voice', and supported her 'choice' to prioritize motherhood as her defining identity. The meetings comprised a range of activities, including crafts and singing, discussion of 'conflict scenarios' in cross-familial, crossgenerational groups, infant massage delivered to babies by the young mothers, grandmother support groups, and a shared community meal. Where necessary, teams made referrals for specialist help. One hundred twenty-eight young mothers came once to 17 groups, and 90% graduated having attended a minimum of six sessions. Evaluation data from mothers and grandmothers showed positive change when comparing pre and post, based on standardized questionnaires. One-tailed, paired t-tests showed statistically significant increases in parental self-efficacy for the teenage mothers, improved parent-child bonds, reductions in stress and family conflict, and increases in social support. Given that rates of teenage pregnancy in the UK are among the highest in Europe, this paper concludes with a discussion of the feasibility and possible merits of introducing FAST babies to England.
Background Health Impact Assessment (HIA) is promoted as a decision-informing tool by public health and governmental agencies. HIA is beneficial when carried out as part of policy development but is also valuable as a methodology when a policy is being implemented to identify and understand the wider health and well-being impacts of policy decisions, particularly when a decision needs to be taken rapidly to protect the population. This paper focusses on a HIA of the ‘Staying at Home and Social Distancing Policy’ or ‘lockdown’ in response to the COVID-19 pandemic in Wales conducted by the Welsh national public health institute. It describes the process and findings, captures the learning and discusses how the process has been used to better understand the wider health and well-being impacts of policy decisions beyond direct health harm. It also examines the role of public health institutes in promoting and using HIA. Methods A HIA was conducted following a standard HIA five step process. A literature review was undertaken alongside 15 qualitative semi-structured interviews with key stakeholders, and relevant health and demographic data were collated. The results were triangulated and analysed to form a holistic assessment of the policy decision and its impacts. Results A wide range of major health and well-being impacts of the lockdown in Wales were identified across the determinants of health, which included positive and negative social, economic, environmental and mental well-being impacts beyond the impact on direct health. Populations affected included children and young people, those on low incomes and women as well as those whose health has been directly impacted by COVID-19 such as older people. The work highlighted the benefit that HIA can bring in emphasizing impacts which can inform policy and shared learning with others. Conclusion HIA is a largely underused tool to understand the impact of policy and political decisions, particularly when a decision has been taken at speed. This case study highlights how HIA provide evidence and information for advocacy and further work by public health institutes, health agencies and policy makers.
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