Core outcome domains for lichen sclerosus:a CORALS initiative consensus statement

BackgroundLichen sclerosus (LS) is a chronic inflammatory condition mainly affecting genital skin. It causes distressing symptoms that impact daily quality of life (QoL). It causes progressive anatomical changes and a potential risk of cancer. Published randomized controlled trials are of varying methodological quality and difficult to combine in meta-analyses. This is partly due to lack of agreed outcome measures to assess treatment response. Identification of core outcome sets (COSs), which standardize key outcomes to be measured in all future trials, is a solution to this problem.ObjectivesTo obtain international agreement on which outcome domains should be measured in interventional trials of genital LS.MethodsRecommended best practice for COS domain development was followed: (i) identification of potential outcome domains: a long list was generated through an up-to-date LS literature search, including information collected during the LS priority-setting partnership; (ii) provisional agreement of outcome domains: a three-stage multi-stakeholder international electronic-Delphi (e-Delphi) consensus study; (iii) final agreement of outcome domains: online consensus meeting with international stakeholders including anonymized voting.ResultsIn total, 123 participants (77 patients, 44 health professionals, 2 researchers) from 20 countries completed three rounds of the e-Delphi study. Eleven outcome domains were rated as ‘critical’ and were discussed at the online consensus meetings. The first set of consensus meetings involved 42 participants from 12 countries. Consensus was met for ‘symptoms’ (100% agreed) and ‘QoL – LS-specific’ (92% agreed). After the second set of meetings, involving 29 participants from 12 countries, ‘clinical (visible) signs’ also met consensus (97% agreed).ConclusionsThe international community has agreed on three key outcome domains to measure in all future LS clinical trials. We recommend that trialists and systematic reviewers incorporate these domains into study protocols with immediate effect. CORALS will now work with stakeholders to select an outcome measurement instrument per prioritized core domain

Design of a CSCW-system to influence increasingsocial interaction and collaboration with agriculture : From passive to active contributors of content in farming communities

Farming is considered as an important area for a sustainable society, and the need for proper information and knowledge exchange among farmers through various forms of social learning processes has been addressed. Beside learning from each other face to face and sharing personal experiences of farming practices, Information and Communication Technology (ICT) in the form of Computer Supported Collaborative Work (CSCW) systems provides another possibility to share and exchange information and knowledge with other farmers. This work demonstrates the necessary functions needed for a future CSCW system for farmers, as a tool for social interaction and communication in agriculture, through which social learning is fostered. The purpose is to stimulate social learning among farmers so they will develop from passive readers to active contributors of information content in the proposed CSCW system, which in the long run may have a positive impact on the overall purpose of farming – increasing harvests. The main aim of this work is to stimulate social learning in agriculture, where farmers’ social online learning processes is stimulated via a CSCW system that has been developed and designed as a high-fi prototype, providing various functions that make it possible to communicate among farmers and other stakeholders. In order to o stimulate so-called reading farmers into actively contributing farmers in the proposed CSCW-system this work also provides some identified lessons learned. These lessons learned provide both design guidelines as well as suggested behavioral changes of farmers and farming organisations in order to foster the use of CSW systems a social interaction and social learning tools in farming practices. Keywords; Agriculture, social learning, communication, CSCL, CSCW, ICT, contribute to content

Att ha ett barn som vårdas på intensivvårdsavdelning : En litteraturstudie av föräldrars erfarenheter

Bakgrund: Intensivvård av barn är unikt relaterat till närståendes specifika involvering. Kompetensbeskrivningen lyfter IVA-sjuksköterskors ansvar i att involvera närstående och den teoretiska utgångspunkten ”familjecentrerad omvårdnad” förklarar att familjen är en helhet. Tidigare forskning beskriver IVA-sjuksköterskors erfarenheter av föräldrars närvaro på IVA och dess effekter. Syfte: Syftet var att belysa föräldrars erfarenheter av att ha ett barn som vårdas på intensivvårdsavdelning. Metod: Systematisk litteraturstudie, kvalitativ ansats. Sökningar i databaser, 21 artiklar inkluderades efter kvalitetsgranskning och analyserades med kvalitativ innehållsanalys. Resultat: Resultatet presenteras utifrån två huvudkategorier, ”att behöva möta ovisshet” med subkategorierna ”att inte ha en plats” och ”att inte veta” samt ”vikten av att bli sedd och bekräftad” med subkategorierna ”behov av trygghet”, ”vikten av information” samt ”vikten av delaktighet”. Slutsats: Föräldrars behov av delaktighet och information var genomgående i resultatet. IVA-sjuksköterskor delar denna uppfattning och det teoretiska perspektivet anses ligger till grund för dessa behov. Föräldrars behov av att förstå och att vara involverad i vården kan förklaras med det familjecentrerade perspektivets utgångspunkt att familjen är en helhet.  Background: Intensive care of children is unique related to the specific involvement of close relatives. The competency description highlights ICU nurses' responsibility in involving relatives and the theoretical starting point "family-centered nursing" explains that the family is a whole. Previous research describes ICU nurses’ experiences of parents' presence in the ICU and its effects. Purpose: The purpose was to describe parents' experiences of having a child in the intensive care unit. Method: Systematic literature study, qualitative approach. Database searches, 21 items were included after quality review. Analyzed with qualitative content analysis. Results: The results are presented based on two main categories, "having to face uncertainty" with the subcategories "not having a place" and "not knowing" and "the importance of being seen and confirmed" with the subcategories "need for security", "the importance of "Information" and "the importance of participation". Conclusion: Parents' need for participation and information was consistent in the results. IVA nurses this view, and the theoretical perspective are the basis for these needs. Parents' need to understand and be involved in care can be explained from the family-centered perspective that the family is a whole.

Att ha ett barn som vårdas på intensivvårdsavdelning : En litteraturstudie av föräldrars erfarenheter

Bakgrund: Intensivvård av barn är unikt relaterat till närståendes specifika involvering. Kompetensbeskrivningen lyfter IVA-sjuksköterskors ansvar i att involvera närstående och den teoretiska utgångspunkten ”familjecentrerad omvårdnad” förklarar att familjen är en helhet. Tidigare forskning beskriver IVA-sjuksköterskors erfarenheter av föräldrars närvaro på IVA och dess effekter. Syfte: Syftet var att belysa föräldrars erfarenheter av att ha ett barn som vårdas på intensivvårdsavdelning. Metod: Systematisk litteraturstudie, kvalitativ ansats. Sökningar i databaser, 21 artiklar inkluderades efter kvalitetsgranskning och analyserades med kvalitativ innehållsanalys. Resultat: Resultatet presenteras utifrån två huvudkategorier, ”att behöva möta ovisshet” med subkategorierna ”att inte ha en plats” och ”att inte veta” samt ”vikten av att bli sedd och bekräftad” med subkategorierna ”behov av trygghet”, ”vikten av information” samt ”vikten av delaktighet”. Slutsats: Föräldrars behov av delaktighet och information var genomgående i resultatet. IVA-sjuksköterskor delar denna uppfattning och det teoretiska perspektivet anses ligger till grund för dessa behov. Föräldrars behov av att förstå och att vara involverad i vården kan förklaras med det familjecentrerade perspektivets utgångspunkt att familjen är en helhet.  Background: Intensive care of children is unique related to the specific involvement of close relatives. The competency description highlights ICU nurses' responsibility in involving relatives and the theoretical starting point "family-centered nursing" explains that the family is a whole. Previous research describes ICU nurses’ experiences of parents' presence in the ICU and its effects. Purpose: The purpose was to describe parents' experiences of having a child in the intensive care unit. Method: Systematic literature study, qualitative approach. Database searches, 21 items were included after quality review. Analyzed with qualitative content analysis. Results: The results are presented based on two main categories, "having to face uncertainty" with the subcategories "not having a place" and "not knowing" and "the importance of being seen and confirmed" with the subcategories "need for security", "the importance of "Information" and "the importance of participation". Conclusion: Parents' need for participation and information was consistent in the results. IVA nurses this view, and the theoretical perspective are the basis for these needs. Parents' need to understand and be involved in care can be explained from the family-centered perspective that the family is a whole.

Synthesis and Application of Aryl-Ferrocenyl (Pseudo-Biarylic) Complexes. Part 5. Design and Synthesis of a New Type of Ferrocene-Based Planar Chiral DMAP Analogues. A New Catalyst System for Asymmetric Nucleophilic Catalysis.

A new first-generation catalyst system for nucleophilic catalysis has been developed. It is based on a planar chiral ferrocene skeleton with either the potent nucleophile 4-(dimethylamino)pyridine (DMAP) or the related 4-nitropyridine N-oxide attached in either the 2- or the 3-position. The syntheses are short, efficient, and enantioselective and X-ray crystal structures of both DMAP-derived catalysts are presented. The DMAP-based catalysts were tested in asymmetric reactions and the 3-derivative 14 showed good activity and a moderate level of enantioselectivity. The sense of induction (selectivity) was studied using molecular modeling and the results pointed at new directions for future generations of catalysts based on this design