PROMS Initiative Working Groups*
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On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.
- MeSH
- hodnocení výsledků péče pacientem MeSH
- lidé MeSH
- roztroušená skleróza * terapie MeSH
- zdravotnický personál MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term "patient" refers to the people with the disease (aka People with Multiple Sclerosis - pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among 'industry', regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies.
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
STATEMENT OF PROBLEM: Evaluating the effectiveness of the management of Olfactory Dysfunction (OD) has been limited by a paucity of high-quality randomised and/or controlled trials. A major barrier is heterogeneity of outcomes in such studies. Core outcome sets (COS) - standardized sets of outcomes that should be measured/reported as determined by consensus-would help overcome this problem and facilitate future meta-analyses and/or systematic reviews (SRs). We set out to develop a COS for interventions for patients with OD. METHODS: A long-list of potential outcomes was identified by a steering group utilising a literature review, thematic analysis of a wide range of stakeholders' views and systematic analysis of currently available Patient Reported Outcome Measures (PROMs). A subsequent e-Delphi process allowed patients and healthcare practitioners to individually rate the outcomes in terms of importance on a 9-point Likert scale. RESULTS: After 2 rounds of the iterative eDelphi process, the initial outcomes were distilled down to a final COS including subjective questions (visual analogue scores, quantitative and qualitative), quality of life measures, psychophysical testing of smell, baseline psychophysical testing of taste, and presence of side effects along with the investigational medicine/device and patient's symptom log. CONCLUSIONS: Inclusion of these core outcomes in future trials will increase the value of research on clinical interventions for OD. We include recommendations regarding the outcomes that should be measured, although future work will be required to further develop and revalidate existing outcome measures.
OUND: Intraamniotic infections negatively affect the mortality and morbidity in parturients and newborns. The prognosis of the disease is associated with a timely diagnosis of these conditions. One of approaches to providing timely information on the risk of the initiation of intra-amniotic infection and early-onset neonatal sepsis is the examination of cytokine levels. OBJECTIVES: The purpose of the work was to evaluate the importance of the cytokines, IL-6, IL-8, and TNF-alpha, and the adhesive molecule, sICAM-1, as risk factors for early-onset neonatal sepsis and intra-amniotic infections. METHODS: In a group of 152 women we sampled the blood from the umbilical cord vein immediately after delivery for the determination of the cytokines IL-6, IL-8 and TNF-alpha, and the adhesive molecule, sICAM-1, in newborns. RESULTS: The sensitivity and specificity results are as follows, respectively: IL-6, 0.800 and 0.972; TNF-alpha, 0.364 and 0.943; IL-8, 0.875 and 0.965; and sICAM-1, 0.833 and 0.952. CONCLUSIONS: For screening purposes, it is suitable to determine levels of IL-8, IL-6, and sICAM-1. For the screening examination, one of the cytokines mentioned is sufficient, i.e., IL-8 or IL-6, or the level of the adhesive molecule, sICAM-1. It is unnecessary to combine these markers.
- MeSH
- Bayesova věta MeSH
- biologické markery MeSH
- císařský řez MeSH
- cytokiny krev MeSH
- dospělí MeSH
- fetální krev chemie MeSH
- interleukin-6 krev MeSH
- interleukin-8 krev MeSH
- lidé MeSH
- mezibuněčná adhezivní molekula-1 krev MeSH
- novorozenec MeSH
- novorozenecký screening MeSH
- plodová voda fyziologie MeSH
- pravděpodobnost MeSH
- riziko MeSH
- sepse epidemiologie krev MeSH
- těhotenství MeSH
- TNF-alfa krev MeSH
- vedení porodu MeSH
- věk matky MeSH
- Check Tag
- dospělí MeSH
- lidé MeSH
- mužské pohlaví MeSH
- novorozenec MeSH
- těhotenství MeSH
- ženské pohlaví MeSH
