Defining a standard set of health outcomes for patients with relapsing-remitting multiple sclerosis.

BACKGROUND: Standardizing health outcomes is challenging in clinical management, but it also holds the potential for creating a healthcare system that is both more effective and efficient. The aim of the present study is to define a standardized set of health outcomes for managing Relapsing-Remitting Multiple Sclerosis (RRMS). METHODS: The project was led and coordinated by a multidisciplinary scientific committee (SC), which included a literature review, a patient-focused group, three nominal group meetings, and two SC meetings. RESULTS: 36 outcome variables were included in the standard set: 24 clinical (including weight, smoking habit, comorbidities, disability, mobility, diagnosis of secondary progressive multiple sclerosis, relapsed-related variables, radiological variables, cognitive status and disease-related symptoms), nine treatment-related (pharmacological and non-pharmacological information), and 3 related to the impact of RRMS on the patient's life (quality of life, pregnancy desire, work-related difficulties). In addition, experts also agreed to collect 10 case-mix variables that may affect but cannot be controlled as part of the management of the condition: 4 sociodemographic (age, sex, race, and employment status) and 6 clinical (height, date of diagnosis and first episode, serological status, early symptoms, and number of relapses pre-diagnosis). CONCLUSION: The information provided through the present standard set of outcome variables can improve the management of RRMS and promote patient-centred quality care.

Sick leave and occupational burnout among nurses caring for patients with multiple sclerosis.

BACKGROUND: Sick leave is a common problem among healthcare professionals. Nurses play a critical role in the multidisciplinary management of multiple sclerosis (MS). However, limited information is available on the phenomenon of sick leave among MS nurses. OBJECTIVE: The aim of this study was to assess the presence of sick leave among nurses caring for patients with MS and to identify associated factors. METHODS: We conducted a multicenter, non-interventional, cross-sectional, web-based study. Nurses involved in MS care from across Spain answered a survey composed of demographic characteristics, professional background, questions about their standard practice, and a behavioral battery including the Maslach Burnout Inventory - Human Services Survey (MBI-HSS). A multivariable logistic regression analysis was conducted to determine the association between nurses' characteristics and sick leave. RESULTS: Ninety-six nurses were included in the study. Mean age (SD) was 44.6 (9.8) years, and 91.7% were female. Participants had a median of 6 (IQR 3.0, 11.0) years of expertise in MS managing a median of 15 (5.0, 35.0) patients per week. Sixteen participants (16.7%) had been on sick leave in the last 6 months, with a median absence of 14.5 days (7.0, 30.0). Sixteen nurses (16.7%) reported severe burnout. Participants on sick leave had higher levels of emotional exhaustion (mean MBI-HSS scores of 22.3 and 16.0, p=0.01) and inadequate interactions with their colleagues (mean Practice Environment Scale - Nursing Work Index scores of 11.8 and 13.1, p=0.01) than their counterparts. Burnout was associated with higher risk of sick leave in the multivariable analysis (OR=1.06 [95% CI 1.00, 1.13], p=0.04) after adjustment for confounders. CONCLUSIONS: Occupational burnout is associated with increased risk of sick leave among nurses managing patients with MS. Identifying burnout may be critical for implementing specific intervention strategies to maintain an adequate functioning of MS care units.

Preferences Toward Attributes of Disease-Modifying Therapies: The Role of Nurses in Multiple Sclerosis Care.

ABSTRACT: BACKGROUND: Nurses play an essential role in coordinating the care of patients with multiple sclerosis (MS) throughout their disease trajectory in a complex treatment landscape. The aim of this study was to assess nurses' preferences toward different disease-modifying therapy attributes. METHODS: We conducted a multicenter, noninterventional, cross-sectional study in collaboration with the Sociedad Española de Enfermería Neurológica. Nurses actively involved in MS care were invited to participate in the study. Prevention of disability progression, preservation of cognitive function, side effect profile and safety monitoring, and method of administration were the treatment attributes tested. Conjoint analysis was used to assess preferences in 8 simulated treatment options and rank them from most to least preferred. RESULTS: A total of 98 nurses were included in the study. The mean (SD) age was 44.7 (9.8) years, and 91.8% were female with a mean (SD) time of experience in MS care of 7.5 (5.4) years. Participants prioritized preservation of cognition (38.6%), followed by preventing disability progression (35.2%) and side effect risk and safety monitoring (13.5%). Route and frequency of administration were the least preferred attributes (7.4% and 5.3%, respectively). Estimated utilities were consistent across the sample according to sociodemographic and professional practice characteristics. CONCLUSIONS: Nurses' preferences toward treatments were mainly driven by efficacy attributes. This information may support the role of nurses in the multidisciplinary management of MS facilitating shared decision making.

Beaches of the Azores archipelago as transitory repositories for small plastic fragments floating in the North-East Atlantic.

Plastic pollution is among the most pervasive stressors currently influencing the marine environment and affecting even the most remote areas. To date, there are still fundamental gaps in our understanding of the major pathways and fate of plastic debris in the oceans. Here we show that oceanic insular environments are important transitory repositories of small plastic items floating in the open ocean. Monthly monitoring of seven beaches over a three-year period demonstrate that beaches of the Azores islands with particular characteristics can capture significant quantities of fragments between 2 and 5 mm in length. The beach with the highest plastic loading rates was found to occasionally accumulate densities exceeding 15,000 fragments m-2 on part of the backshore. However, a large portion of these fragments can be rapidly washed back into the marine environment. Detailed characterization of those plastic items revealed the typology and size distribution to be similar throughout the seven beaches and through the 33 months surveyed, suggesting a same and unique source. Our results show that these oceanic islands of the North-East Atlantic are under pressure of high quantities of fragmented plastic debris that probably entered the ocean many years ago.

Spatio-temporal variability of beached macro-litter on remote islands of the North Atlantic.

Marine litter has been identified as one of the major environmental problems that oceans are currently facing. Worldwide efforts are being made to reduce the input of litter into the oceans, and projects aimed at monitoring their quantities are key to evaluate their success. This study, provide baseline information on the quantities of marine litter found on 42 beaches spread throughout the nine islands of the Azores archipelago, North Atlantic Ocean. A total of 31,439 items were collected throughout the archipelago with an average density of 0.62 ±â€¯0.15 macro-litter items m-2. Of this litter 87% were plastic and its majority (67%) plastic fragments. Six beaches were further monitored every three months for two years. Substrate type and wind exposure were important factors for explaining patterns of litter deposition. Our results highlight that marine litter have the tendency to accumulate in remote islands of the North Atlantic Ocean.

Checklist of the flower flies of Ecuador (Diptera, Syrphidae).

Syrphidae is one of the most speciose families of true flies, with more than 6,100 described species and worldwide distribution. They are important for humans acting as crucial pollinators, biological control agents, decomposers, and bioindicators. One third of its diversity is found in the Neotropical Region, but the taxonomic knowledge for this region is incomplete. Thus, taxonomic revisions and species checklists of Syrphidae in the Neotropics are the highest priority for biodiversity studies. Therefore, we present the first checklist of Syrphidae for Ecuador based on literature records, and provide as well the original reference for the first time species citations for the country. A total of 201 species were recorded for Ecuador, with more than 600 records from 24 provinces and 237 localities. Tungurahua, Pastaza, and Galápagos were the best sampled provinces. Although the reported Ecuadorian syrphid fauna only comprises 11.2 % of the described Neotropical species, Ecuador has the third highest flower fly diversity density after Costa Rica and Suriname. These data indicate the high species diversity for this country in such small geographic area.