23 research outputs found
An online glaucoma educational course for patients to facilitate remote learning and patient empowerment
In both face-to-face and teleophthalmology glaucoma clinics, there are significant time constraints and limited resources available to educate the patient and their carers regarding the glaucoma condition. Glaucoma patients are often not satisfied with the content and amount of information they receive and have demonstrated a substantial lack of knowledge regarding their condition. Innovative educational tools that facilitate accessible digital remote patient education can be a powerful adjunct to empower patients in becoming healthcare partners. We describe the development of a free, comprehensive, multimodal online glaucoma patient education course for adults with glaucoma, their family and friends and carers, with the aim of providing a readable resource to aid remote learning and understanding of the condition. The working group for the development of the course comprised of consultants, medical practitioners and education specialists and expert patients. Given the specialised nature of ophthalmology and glaucoma, certain aspects can be difficult to conceptualise, and, therefore, clear and adequate explanations of concepts are provided in the course using diagrams, flow charts, medical illustrations, images, videos, written text, analogies and quizzes. The course is available in a short and long version to suit different learning needs which take approximately 2 hours and 10 hours to complete respectively. The contents list allows course takers to find sections relevant to them and it can be taken anywhere, as long as there is Internet access. We invite you to share this resource with your patients and their families, friends and carers
Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS
Despite significant progress in the development of therapies for relapsing MS, progressive MS remains comparatively disappointing. Our objective, in this paper, is to review the current challenges in developing therapies for progressive MS and identify key priority areas for research. A collaborative was convened by volunteer and staff leaders from several MS societies with the mission to expedite the development of effective disease-modifying and symptom management therapies for progressive forms of multiple sclerosis. Through a series of scientific and strategic planning meetings, the collaborative identified and developed new perspectives on five key priority areas for research: experimental models, identification and validation of targets and repurposing opportunities, proof-of-concept clinical trial strategies, clinical outcome measures, and symptom management and rehabilitation. Our conclusions, tackling the impediments in developing therapies for progressive MS will require an integrated, multi-disciplinary approach to enable effective translation of research into therapies for progressive MS. Engagement of the MS research community through an international effort is needed to address and fund these research priorities with the ultimate goal of expediting the development of disease-modifying and symptom-relief treatments for progressive MS
Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS
Despite significant progress in the development of therapies for relapsing MS, progressive MS remains comparatively disappointing. Our objective, in this paper, is to review the current challenges in developing therapies for progressive MS and identify key priority areas for research. A collaborative was convened by volunteer and staff leaders from several MS societies with the mission to expedite the development of effective disease-modifying and symptom management therapies for progressive forms of multiple sclerosis. Through a series of scientific and strategic planning meetings, the collaborative identified and developed new perspectives on five key priority areas for research: experimental models, identification and validation of targets and repurposing opportunities, proof-of-concept clinical trial strategies, clinical outcome measures, and symptom management and rehabilitation. Our conclusions, tackling the impediments in developing therapies for progressive MS will require an integrated, multi-disciplinary approach to enable effective translation of research into therapies for progressive MS. Engagement of the MS research community through an international effort is needed to address and fund these research priorities with the ultimate goal of expediting the development of disease-modifying and symptom-relief treatments for progressive MS
Beyond the merchant and the clergyman: assessing moral claims about development cooperation
This article proposes to move beyond the categories of altruism and self-interest in the analyses of the motives for development cooperation. This opposition ignores the inherently moral nature of development policy. The article illustrates the shortcomings of such a perspective by tracing the metaphor of the merchant and the clergyman as archetypical figures shaping Dutch development policy. Through these images the suggestion of an opposition between moral and amoral motives in the history of development has gained a strong foothold within the interplay of scholars, policy makers and public opinion. We go on to assess claims about economy, security, solidarity, prestige and guilt, and ecology, which have been brought forward to legitimise Dutch foreign aid. This analysis calls for research on the dynamics of the transnational exchanges of ideas, interests and expectations, especially during episodes when the moral validity of policy has been explicitly contested
Goblet cell appendiceal tumors : management dilemmas and long-term outcomes
Background Appendiceal Goblet cell tumors (GCTs) are clinically more aggressive, and have a worse outcome than midgut neuroendocrine tumors (mNETs). Guidelines for management of GCTs are limited. Methods A retrospective case-study analysis was performed in patients with a diagnosis of GCT, confirmed on histological review. Patients were evaluated clinically, biochemically, and radiologically. Results 48 patients were identified (TNM stage I-II: 27, stage III: 15, stage IV: 6). Median follow-up was 44 months and was complete in all patients. 68.8% presented with acute appendicitis. 44/48 patients had initial appendectomy, followed by prophylactic right hemicolectomy in 41. 10/48 patients had recurrent disease [median time to recurrence 28 months (range 4-159)]. Of those, 9 received systemic chemotherapy (FOLFOX/FOLFIRI), which was also given in 5/48 patients with disseminated disease at diagnosis. Partial response, stable disease and disease progression was noted in 22%, 22% and 56%, respectively. Adjuvant chemotherapy was also administered in 9/48 patients with stage III disease after right hemicolectomy, however in 3/9 the disease recurred. Median progression/disease-free-survival was 44 months (range 3-159) and overall 5-year survival rate was 41.6%. Conclusions The clinical behaviour of GCTs is more similar to colorectal adenocarcinomas than to NETs. A prophylactic right hemicolectomy is recommended to reduce the risk of recurrence. Systemic chemotherapy, using colorectal adenocarcinoma regimens, is indicated for advanced or recurrent disease and has encouraging results. Prospective studies are needed to define the role of adjuvant chemotherapy and the optimal chemotherapy regimen