Retinoblastoma is an aggressive eye cancer of infancy and childhood. Survival and the chance of saving vision depend on severity of disease at presentation. Retinoblastoma was the first tumour to draw attention to the genetic aetiology of cancer. Despite good understanding of its aetiology, mortality from retinoblastoma is about 70% in countries of low and middle income, where most affected children live. Poor public and medical awareness, and an absence of rigorous clinical trials to assess innovative treatments impede progress. Worldwide, most of the estimated 9000 newly diagnosed patients every year will die. However, global digital communications present opportunities to optimise standards of care for children and families affected by this rare and often devastating cancer. Parents are now leading the effort for widespread awareness of the danger of leucocoria. Genome-level technologies could make genetic testing a reality for every family affected by retinoblastoma. Best-practice guidelines, online sharing of pathological images, point-of-care data entry, multidisciplinary research, and clinical trials can reduce mortality. Most importantly, active participation of survivors and families will ensure that the whole wellbeing of the child is prioritised in any treatment plan.

Survival of retinoblastoma is >90% in developed countries but there are significant differences with developing countries in stage at presentation, available treatment options, family compliance, and survival. In low‐income countries (LICs), children present with advanced disease, and the reasons are socioeconomic and cultural. In middle‐income countries (MICs), survival rates are better (>70%), but there is a high prevalence of microscopically disseminated extraocular disease. Programs for eye preservation have been developed, but toxicity‐related mortality is higher. Although effective treatment of microscopically extraocular disease improved the outcome, worldwide survival will be increased only by earlier diagnosis and better treatment adherence. Pediatr Blood Cancer 2011;56:341–348. © 2010 Wiley‐Liss, Inc.

PurposeOcular morbidity (OM) describes any eye disease regardless of resultant visual loss. Ocular morbidity may affect large numbers of people in low income countries and could lead to many episodes of care. However there is limited evidence about the prevalence of ocular morbidity or resulting health-seeking behavior. This study in Mbeere District, Kenya, set out to explore both these issues.MethodsA cross-sectional household survey was conducted in 2011. Trained teams moved from house to house examining and questioning residents on ocular morbidity and health-seeking behavior. Data were collected on standardized proformas and entered into a database for analysis.Results3,691 people were examined (response rate 91.7%). 15.52% (95% CI 13.86–16.92) had at least one ocular morbidity in at least one eye. The leading cause was presbyopia which affected 25.11% (95% CI 22.05–28.45) of participants over 35 and increased with age. Other leading causes of OM were conditions that affected the lens (32.58%) and the conjunctiva (31.31%). No association was found between educational attainment or employment and OM. 9.63% (7.87–11.74) self-reported an ocular morbidity in the previous six months and 45.94% (95% CI 37.1–55.04) stated that they had sought treatment for the condition.ConclusionA large number of people were affected by an ocular morbidity in this survey. Most of these people could potentially be managed in their own communities through primary care services (e.g. those with presbyopia). Further work is required to understand the best way of providing an effective, equitable service for ocular morbidity.

BackgroundStrategic, interdisciplinary partnerships are essential to addressing the complex drivers of health inequities that result in survival disparities worldwide. Take for example the aggressive early childhood eye cancer retinoblastoma, where survival reaches 97 % in resource-rich countries, but is as low 30 % in some resource-limited nations, where 92 % of the burden lies. This suggests a need for a multifaceted approach to achieve a tangible and sustainable increase in survival.MethodsWe assembled the history the Kenyan National Retinoblastoma Strategy (KNRbS), using information documented in NGO reports, grant applications, news articles, meeting agendas and summaries. We evaluated the KNRbS using the principles found in the guide for transboundary research partnerships developed by the Swiss Commission for Research Partnerships with Developing Countries.ResultsA nationally co-ordinated approach drawing input and expertise from multiple disciplines and sectors presented opportunities to optimise cure of children with retinoblastoma. Annual meetings were key to achieving the over 40 major outputs of the group’s efforts, related to Awareness, Medical Care, Family Support and Resource Mobilization. Three features were found to be critical to the KNRbS success: multidisciplinarity, consistency and flexibility.ConclusionThe KNRbS has achieved a number of key outputs with limited financial investment. As a partnership, the KNRbS meets most of the criteria identified for success. Challenges remain in securing the long-term sustainability of its achievements. Elements of the Kenyan National Retinoblastoma Strategy may be useful to other developing countries struggling with limited survival of retinoblastoma and other cancers or rare diseases.Electronic supplementary materialThe online version of this article (doi:10.1186/s12992-016-0160-1) contains supplementary material, which is available to authorized users.

BackgroundHeart failure is an emerging challenge for Sub Saharan Africa. However, research on patients’ needs and experiences of care is scarce with little evidence available to support and develop services. We aimed to explore the experiences of patients living and dying with heart failure in Kenya.MethodsWe purposively recruited 18 patients admitted with advanced heart failure at a rural district hospital in Kenya. We conducted serial in depth interviews with patients at 0, 3 and 6 months after recruitment, and conducted bereavement interviews with carers. Interviews were recorded, transcribed into English and analyzed using a thematic approach, assisted by Nvivo software package.ResultsForty-four interviews were conducted. Patients experienced physical, psychosocial, spiritual and financial distress. They also had unmet needs for information about their illness, how it would affect them and how they could get better. Patients experience of and their interpretation of symptoms influenced health care seeking. Patients with acute symptoms sought care earlier than those with more gradual symptoms which tended to be normalised as part of daily life or assumed to be linked to common treatable conditions. Nearly all patients expected to be cured and were frustrated by a progressive illness poorly responsive to treatment. Accumulating costs was a barrier to continuity of care and caused tensions in social relationships. Patients valued information on the nature of their illness, prognosis, self-care, lifestyle changes and prevention strategies, but this was rarely available.ConclusionsThis is the first in-depth study to explore the experiences of people living with advanced heart failure in Kenya. This study suggests that patients would benefit from holistic care, such as a palliative approach that is aimed at providing multidimensional symptom management. A palliative approach to services should be provided alongside chronic disease management aimed at primary prevention of risk factors, and early identification and initiation of disease modifying therapy. Further research is needed to determine best practice for integrating palliative care for people living and dying with heart failure.