18 research outputs found

    Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken.

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    peer reviewedDespite the low prevalence of each rare disease, the total burden is high. Patients with rare diseases encounter numerous barriers, including delayed diagnosis and limited access to high-quality treatments. In order to tackle these challenges, the European Commission launched the European Reference Networks (ERNs), cross-border networks of healthcare providers and patients representatives. In parallel, the aims and structure of these ERNs were translated at the federal and regional levels, resulting in the creation of the Flemish Network of Rare Diseases. In line with the mission of the ERNs and to ensure equal access to care, we describe as first patient pathways for systemic sclerosis (SSc), as a pilot model for other rare connective and musculoskeletal diseases. Consensus was reached on following key messages: 1. Patients with SSc should have multidisciplinary clinical and investigational evaluations in a tertiary reference expert centre at baseline, and subsequently every three to 5 years. Intermediately, a yearly clinical evaluation should be provided in the reference centre, whilst SSc technical evaluations are permissionably executed in a centre that follows SSc-specific clinical practice guidelines. In between, monitoring can take place in secondary care units, under the condition that qualitative examinations and care including interactive multidisciplinary consultations can be provided. 2. Patients with early diffuse cutaneous SSc, (progressive) interstitial lung disease and/or pulmonary arterial hypertension should undergo regular evaluations in specialised tertiary care reference institutions. 3. Monitoring of patients with progressive interstitial lung disease and/or pulmonary (arterial) hypertension will be done in agreement with experts of ERN LUNG

    Exclusion bias in empirical social interaction models: causes, consequences and solutions

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    Peer effects in development programme awareness of vulnerable groups in rural Tanzania

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    Household Survey for Evaluation of Rwanda Women’s Empowerment Project, 2013

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    Abstract copyright UK Data Service and data collection copyright owner.The Household Survey for Evaluation of Rwanda Women’s Empowerment Project, 2013 data were collected by Oxfam GB as part of the organisation's Global Performance Framework. Under this framework, a small number of completed or mature projects are selected at random each year for an evaluation of their impact, known as an Effectiveness Review. This data was used to evaluate the impact of the 'Women's Economic Leadership through Horticulture Material-Planting Business' project in Rwanda, which was implemented in four districts of Rwanda between August 2011 and March 2014 by Oxfam and a local partner. The project aimed to strengthen women's capacity for engaging in the production of pineapple planting material, and thereby to enhance women’s socio-economic status at household and community level. Among the key project activities was the provision of training and mentorship in improved agricultural planting-material techniques and business development. Women were also trained in cross-cutting issues, such as HIV/AIDS and gender promotion. In addition to these activities, the project aimed to improve women farmers' access to credit through microfinance. The data collection for the evaluation took place in March 2014 in two of the participating districts. All 216 women who participated in the project in these districts were targeted for the survey, though 188 were actually located and interviewed. For comparison purposes, 415 women were selected at random from nearby villages where the project had not been implemented. The evaluation adopted a quasi-experimental approach to compare between participant and comparison women, to assess the impact of the project on women’s empowerment. Anonymisation: Names of villages have been dropped from the dataset. The following variables have been recoded so as to prevent unique cases that may allow identification of the respondents: household size (capped at 10), the age of household members (grouped by 5-year intervals), principal job of respondent and household head (combined categories), and materials of roof and floor of house (combined categories). Data concerning a respondent's experience with gender-based violence have been removed, as these data are particularly sensitive. Main Topics:Women's empowerment, impact of business and agricultural training on women's economic leadership

    Om foreldres investeringer i barns utvikling

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    I denne artikkelen diskuterer vi karakteristikker ved foreldre som kan påvirke barns utvikling i et relativt fattig afrikansk land, Tanzania. Vi setter søkelys på investeringer i humankapital i de første leveårene. Slike investeringer legger grunnlaget for læring gjennom livsløpet, og littera­turen påpeker at utvikling i tidlige leveår er funda­mentalt for å oppnå gode resultater senere i livet. Vi diskuterer foreldres rolle og søker å forstå hvilke forventninger foreldre har, hvordan de tenker på investeringer som har avkastning først flere år fram i tid, og hvordan de ønsker å fordele ressurser mellom ulike familiemedlemmer (barn versus voksne, og mor versus far). Vi ser på forskjeller mellom mor og far, og vi diskuterer hvor mye makt mor har til å påvirke husholdets beslutninger

    Helping Patients to Make Informed Decisions: The PARE Guide to Disseminate EULAR Recommendations Among Patients

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    BACKGROUND Accurate patient information is necessary to make informed health decisions. However, the traditional, scientific wording of professional recommendations is often difficult to understand for lay people. OBJECTIVES To develop a practical guide for patient organizations and health professionals to promote the dissemination of EULAR recommendations among patients. METHODS We conducted a Systematic Literature Review (SLR) of effective and feasible dissemination strategies to inform and educate patients about recommendations or guidelines. Two task force meetings took place to discuss the outcomes of the SLR and to develop a set of “points to consider” (i.e., advice based on literature and expert opinion) when developing and disseminating recommendations among patients. The task force comprised 7 patient representatives, 3 rheumatologists, 3 health professionals and 1 implementation specialist from 8 European countries. RESULTS The SLR showed that high quality studies on the effectiveness of dissemination strategies as well as the barriers for implementing a strategic dissemination approach are scarce. Out of 3143 unique publications only 12 studies could be included for review. These showed that a dissemination plan, written at the start of the recommendation development process, involvement of patients in this development process and the use of a combination of traditional and innovative dissemination tools, are key facilitators for success. These SLR findings have been used to write a practical guide for the development, translation, adaptation and dissemination of EULAR recommendations among patients and patient organisations. The booklet can be used by patient organisations and health professionals and contains suggestions, best practices and checklists to start the dissemination process. CONCLUSIONS PARE produced a practical guide for disseminating recommendations among patients. In the coming year the guide will be used in a EULAR project about the dissemination of EULAR recommendations for glucocorticoid treatment in rheumatic diseases and a workshop at the PARE conference

    Defining conditions where long-term glucocorticoid treatment has an acceptably low level of harm to facilitate implementation of existing recommendations: Viewpoints from an EULAR task force

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    There is convincing evidence for the known and unambiguously accepted beneficial effects of glucocorticoids at low dosages. However, the implementation of existing recommendations and guidelines on the management of glucocorticoid therapy in rheumatic diseases is lagging behind. As a first step to improve implementation, we aimed at defining conditions under which long-term glucocorticoid therapy may have an acceptably low level of harm. A multidisciplinary European League Against Rheumatism task force group of experts including patients with rheumatic diseases was assembled. After a systematic literature search, breakout groups critically reviewed the evidence on the four most worrisome adverse effects of glucocorticoid therapy (osteoporosis, hyperglycaemia/diabetes mellitus, cardiovascular diseases and infections) and presented their results to the other group members following a structured questionnaire for final discussion and consensus finding. Robust evidence on the risk of harm of long-term glucocorticoid therapy was often lacking since relevant study results were often either missing, contradictory or carried a high risk of bias. The group agreed that the risk of harm is low for the majority of patients at long-term dosages of ≤5 mg prednisone equivalent per day, whereas at dosages of >10 mg/day the risk of harm is elevated. At dosages between >5 and ≤10 mg/day, patient-specific characteristics (protective and risk factors) determine the risk of harm. The level of harm of glucocorticoids depends on both dose and patient-specific parameters. General and glucocorticoid-associated risk factors and protective factors such as a healthy lifestyle should be taken into account when evaluating the actual and future risk

    EULAR evidence‐based recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases

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    Objective: To develop evidence-based recommendations for the management of systemic glucocorticoid ( GC) therapy in rheumatic diseases. Methods: The multidisciplinary guideline development group from 11 European countries, Canada and the USA consisted of 15 rheumatologists, 1 internist, 1 rheumatologist-epidemiologist, 1 health professional, 1 patient and 1 research fellow. The Delphi method was used to agree on 10 key propositions related to the safe use of GCs. A systematic literature search of PUBMED, EMBASE, CINAHL, and Cochrane Library was then used to identify the best available research evidence to support each of the 10 propositions. The strength of recommendation was given according to research evidence, clinical expertise and perceived patient preference. Results: The 10 propositions were generated through three Delphi rounds and included patient education, risk factors, adverse effects, concomitant therapy ( ie, non-steroidal anti-inflammatory drugs, gastroprotection and cyclo-oxygenase-2 selective inhibitors, calcium and vitamin D, bisphosphonates) and special safety advice ( ie, adrenal insufficiency, pregnancy, growth impairment). Conclusion: Ten key recommendations for the management of systemic GC-therapy were formulated using a combination of systematically retrieved research evidence and expert consensus. There are areas of importance that have little evidence ( ie, dosing and tapering strategies, timing, risk factors and monitoring for adverse effects, perioperative GC-replacement) and need further research; therefore also a research agenda was composed
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