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Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.
Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.
Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.
Significance of results
This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.
Wales has ambitious health, wealth, and innovation policies and a clear goal to use the economic muscle of the Welsh National Health Service (NHS) to support its strong life sciences sector. Health Technology Wales (HTW) has a clear remit to appraise technologies over the span of their lifecycle from innovation to obsolescence. HTW is collaborating with the Bevan Commission through their national Health Technology Exemplars (HTEs), which partners NHS and industry stakeholders to strengthen innovation within the Welsh health system.
Health technology assessment (HTA) methods were used to produce topic exploration reports for assessing the evidence underpinning applicant innovations. A “Dragons’ Den” expert panel was convened to select the successful HTEs.
Fourteen Bevan HTEs were awarded funds, which were matched by industry partners. Application of HTA methods resulted in more critical consideration of technology value propositions, including: developing pull models of innovation focused on delivering health technology solutions for current problems facing NHS Wales; supporting early dialogue between the NHS and industry partners around demonstrating evidence of improved patient outcomes; and focusing on transformative rather than incremental innovation. The most promising innovations will progress to rapid HTA, where the evidence generated will be used to develop guidance for NHS Wales.
HTA methods were productively deployed at the innovation phase of the technology lifecycle to support evidence-informed allocation of scarce innovation resources. In this way, HTW is working with key stakeholders to identify and offer early support to the most promising innovations, with the aim of expediting their adoption and realizing health benefits for patients as quickly as possible. The Bevan Commission has partnered with HTW to routinely build in HTA and evidence considerations in its future innovation calls and competitions. Thus, HTW has established a “feeder” pipeline for assessing bottom-up service-led innovations and encouraging evidence consideration throughout the lifecycle of innovative technologies.
Many older adults experience what is clinically recognised as frailty but little is known about the perceptions of, and attitudes regarding, being frail. This qualitative study explored adults' perceptions of frailty and their beliefs concerning its progression and consequences. Twenty-nine participants aged 66–98 with varying degrees of frailty, residing either in their homes or institutional settings, participated in semi-structured interviews. Verbatim transcripts were analysed using a Grounded Theory approach. Self-identifying as ‘frail’ was perceived by participants to be strongly related to their own levels of health and engagement in social and physical activity. Being labelled by others as ‘old and frail’ contributed to the development of a frailty identity by encouraging attitudinal and behavioural confirmation of it, including a loss of interest in participating in social and physical activities, poor physical health and increased stigmatisation. Using both individual and social context, different strategies were used to resist self-identification. The study provides insights into older adults' perceptions and attitudes regarding frailty, including the development of a frailty identity and its relationship with activity levels and health. The implications of these findings for future research and practice are discussed.
An influenza pandemic may demand that a large number of influenza immunizations be rapidly given with limited resources. This study tested the utility and practicality of self-immunization with live attenuated influenza intranasal vaccine in a mass vaccination event.
The self-immunization clinic model was evaluated in a three-tiered fashion using student, first responder, and open community events.
A single nurse was easily able to direct 89 people through the process of self-administration of the vaccine in a three-hour first-responder event and 122 people in a three-hour open community event. 96% of participants believed that they had performed the self-administration correctly, and the same percentage reported that they would like to receive influenza immunization by self-vaccination in the future.
The self-immunization clinic is a practical and potentially useful model in an influenza pandemic setting.
The proposed mechanism for Reducing Emissions from Deforestation and Degradation (REDD+) offers significant potential for conserving forests to reduce negative impacts of climate change. Tanzania is one of nine pilot countries for the United Nations REDD Programme, receives significant funding from the Norwegian, Finnish and German governments and is a participant in the World Bank’s Forest Carbon Partnership Facility. In combination, these interventions aim to mitigate greenhouse gas emissions, provide an income to rural communities and conserve biodiversity. The establishment of the UN-REDD Programme in Tanzania illustrates real-world challenges in a developing country. These include currently inadequate baseline forestry data sets (needed to calculate reference emission levels), inadequate government capacity and insufficient experience of implementing REDD+-type measures at operational levels. Additionally, for REDD+ to succeed, current users of forest resources must adopt new practices, including the equitable sharing of benefits that accrue from REDD+ implementation. These challenges are being addressed by combined donor support to implement a national forest inventory, remote sensing of forest cover, enhanced capacity for measuring, reporting and verification, and pilot projects to test REDD+ implementation linked to the existing Participatory Forest Management Programme. Our conclusion is that even in a country with considerable donor support, progressive forest policies, laws and regulations, an extensive network of managed forests and increasingly developed locally-based forest management approaches, implementing REDD+ presents many challenges. These are being met by coordinated, genuine partnerships between government, non-government and community-based agencies.