Performance of the EULAR Systemic sclerosis Impact of Disease (ScleroID) questionnaire as a patient-reported outcome measure for patients with diffuse systemic sclerosis.

Objective: Systemic sclerosis Impact of Disease (ScleroID) is the first comprehensive patient-reported outcome measure (PROM) specifically developed for systemic sclerosis (SSc). We investigated the performance of ScleroID in patients with diffuse cutaneous SSc (dcSSc), as a prerequisite for its use in randomised controlled trials (RCTs) testing potentially disease-modifying drugs.

Methods: All patients with dcSSc from the large, multicentric, ScleroID cohort were included.

Knowledge and Awareness of Non-Technical Skills Over the Course of an Educational Program in Nursing - A Repeated Cross-Sectional Study.

Background: Non-technical skills (NTS) play an important role in preventing adverse events during hospitalization. Knowledge, awareness and mastery of NTS becomes important key factors in preventing errors. Current status of students and supervisor's knowledge and awareness of NTS are needed in order to construct an educational plan for improvement.

Development and validation of a patient-reported outcome measure for systemic sclerosis: the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire.

Objectives: Patient-reported outcome measures (PROMs) are important for clinical practice and research. Given the high unmet need, our aim was to develop a comprehensive PROM for systemic sclerosis (SSc), jointly with patient experts.

Methods: This European Alliance of Associations for Rheumatology (EULAR)-endorsed project involved 11 European SSc centres.

The Patient Experienced Symptom State (PESS): a patient-reported global outcome measure that may better reflect disease remission status.

Objectives: In RA, Patient Acceptable Symptom State assesses disease from the patient's perspective, which does not correspond either to disease remission or to full control of disease impact. This study aims to explore the properties of a novel multilevel Patient Experienced Symptom State (PESS).

Methods: This was a cross-sectional analysis of two datasets of patients with RA.

Patient-reported outcome measures in the management of neovascular age-related macular degeneration: a 1-year prospective study.

Objective: To prospectively explore the following patient-reported outcome measures (PROMs) in the management of neovascular age-related macular degeneration (nAMD): (1) self-reported visual function, (2) symptom-state, (3) general-health and (4) satisfaction of treatment.

Methods And Analysis: Corresponding to the four PROMs, participants responded to the following questionnaires: (1) National Eye Institute Visual-Functioning-Questionnaire (NEI-VFQ-25), (2) Patient-Acceptable-Symptom-Status (PASS 5), (3) EuroQol-Group-Questionnaire (EQ-5D-3L) and (4) Dimensions of Importance in Treatment of nAMD (DITAMD). Data were collected at baseline and after 3, 6 and 12 months of intravitreal antivascular endothelial growth factor treatment.

Psychometric performance of the PAncreatic CAncer disease impact (PACADI) score.

Background/objective: Pancreatic Cancer Disease Impact (PACADI) score measures the impact of pancreatic cancer (PC) on important health dimensions, selected by patients. The aim of this single center study was to test the psychometric performance of the Pancreatic Cancer Disease Impact (PACADI) score.

Methods: Patients with suspected pancreatic cancer (PC) completed PACADI, the EuroQol-5D (EQ-5D index) and Edmonton Symptom Assessment System (ESAS) in this longitudinal observational study.

Psychometric properties of the National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) in a Norwegian population of patients with neovascular age-related macular degeneration compared to a control population.

Background: Although visual acuity and optical coherence tomography (OCT) are most widely used as outcomes in treatment of neovascular age-related Macular Degeneration (nAMD), patient reported outcome measures are increasingly recognized. National Eye Institute Visual Function Questionnaire (NEI-VFQ 25) was developed to capture the perceived visual function. Yet, evidence of psychometric performance in the target population is required.

The Impact of Age-Related Macular Degeneration on Quality of Life and Its Association With Demographic Data: Results From the NEI VFQ-25 Questionnaire in a Norwegian Population.

To describe vision-related quality of life (VRQoL) in a Norwegian population of patients with newly diagnosed neovascular age-related macular degeneration (nAMD), and to evaluate the association with demographic data of age, gender, and civil status (married, cohabitants/unmarried, not cohabitants). The Norwegian version of the National Eye Institute Visual Functioning Questionnaire-25 (NEI VFQ-25) questionnaire was administered to 145 patients recently diagnosed with nAMD. We used descriptive statistics and bivariate analysis to determine the distribution of demographic parameters and a possible association between demographic parameters and NEI VFQ-25 scores.

Development and testing of a patient-derived questionnaire for treatment of neovascular age-related macular degeneration: dimensions of importance in treatment of neovascular age-related macular degeneration.

Purpose: Studies reporting on patient perspectives during treatment of neovascular age-related macular degeneration (nAMD) are limited. Thus, the aim of this study was to develop and test psychometric performance of a patient-derived questionnaire to capture important experiences during intravitreal treatment.

Methods: Patients (n = 44) with at least 3-month experience of intravitreal injection treatment for nAMD identified the dimensions of priority and also performed a weighting procedure to develop a score for comparison.

Firing-rate models for neurons with a broad repertoire of spiking behaviors.

Capturing the response behavior of spiking neuron models with rate-based models facilitates the investigation of neuronal networks using powerful methods for rate-based network dynamics. To this end, we investigate the responses of two widely used neuron model types, the Izhikevich and augmented multi-adapative threshold (AMAT) models, to a range of spiking inputs ranging from step responses to natural spike data. We find (i) that linear-nonlinear firing rate models fitted to test data can be used to describe the firing-rate responses of AMAT and Izhikevich spiking neuron models in many cases; (ii) that firing-rate responses are generally too complex to be captured by first-order low-pass filters but require bandpass filters instead; (iii) that linear-nonlinear models capture the response of AMAT models better than of Izhikevich models; (iv) that the wide range of response types evoked by current-injection experiments collapses to few response types when neurons are driven by stationary or sinusoidally modulated Poisson input; and (v) that AMAT and Izhikevich models show different responses to spike input despite identical responses to current injections.

Survival, Complications and Patient Reported Outcomes after Pancreatic Surgery.

Background: Long-term effects of complications in pancreatic surgery have not been systematically evaluated. The objectives were to assess potential effects of complications on survival and patient reported outcomes (PROs) as well as feasibility of PRO questionnaires in patients with periampullary and pancreatic tumors.

Methods: From October 2008 to December 2011, 208 patients undergoing pancreatic surgery were included in a prospective observational study.

Associations Between Five Important Domains of Health and the Patient Acceptable Symptom State in Rheumatoid Arthritis and Psoriatic Arthritis: A Cross-Sectional Study of 977 Patients.

Objective: To explore the link between a patient acceptable symptom state (PASS) and patient-perceived impact in rheumatoid arthritis (RA) and psoriatic arthritis (PsA).

Methods: This was a cross-sectional study of unselected patients with definite RA or PsA. Pain, functional capacity, fatigue, coping, and sleep disturbance were assessed using a numeric rating scale (0-10) and compared between patients in PASS or not (Cohen's effect sizes).

Determinants of Patient-Physician Discordance in Global Assessment in Psoriatic Arthritis: A Multicenter European Study.

Objective: Patient-physician discordance in global assessment of disease activity concerns one-third of patients, but what does it reflect? We aimed to assess patient-physician discordance in psoriatic arthritis (PsA) and patient-reported domains of health (physical and psychological) associated with discordance.

Methods: We analyzed the PsAID (Psoriatic Arthritis Impact of Disease), a cross-sectional, multicenter European study of patients with PsA according to expert opinion. Patient global assessment (PGA) and physician global assessment (PhGA) were rated on a 0-10 numeric rating scale.

Biophysical Network Modelling of the dLGN Circuit: Different Effects of Triadic and Axonal Inhibition on Visual Responses of Relay Cells.

Despite its prominent placement between the retina and primary visual cortex in the early visual pathway, the role of the dorsal lateral geniculate nucleus (dLGN) in molding and regulating the visual signals entering the brain is still poorly understood. A striking feature of the dLGN circuit is that relay cells (RCs) and interneurons (INs) form so-called triadic synapses, where an IN dendritic terminal can be simultaneously postsynaptic to a retinal ganglion cell (GC) input and presynaptic to an RC dendrite, allowing for so-called triadic inhibition. Taking advantage of a recently developed biophysically detailed multicompartmental model for an IN, we here investigate putative effects of these different inhibitory actions of INs, i.

Fatigue in psoriatic arthritis - a cross-sectional study of 246 patients from 13 countries.

Objectives: Fatigue is an aspect of psoriatic arthritis (PsA), which is important to patients. The objective was to evaluate magnitude of fatigue in PsA patients and to assess factors that might explain high levels of fatigue.

Methods: This was an ancillary analysis of a cross-sectional study in 13 countries of unselected PsA patients who fulfilled the CASPAR criteria.

Preoperative cognitive function predicts survival in patients with resectable pancreatic ductal adenocarcinoma.

Background: The purpose of this prospective study was to evaluate whether pre-surgery health-related quality of life (HRQoL) and subjectively rated symptom scores are prognostic factors for survival in patients with resectable pancreatic ductal adenocarcinoma (PDAC).

Methods: Patients undergoing pancreatic resection for PDAC completed the Edmonton Symptom Assessment System (ESAS) and the EORTC QLQ-C30 and QLQ-PAN26 questionnaires preoperatively. Patient, tumor and treatment characteristics, recurrence and survival were registered.

Patient global assessment in psoriatic arthritis - what does it mean? An analysis of 223 patients from the Psoriatic arthritis impact of disease (PsAID) study.

Objective: Patient global assessment is a key outcome measure in psoriatic arthritis. To explore the meaning of patient global assessment in psoriatic arthritis by examining associations to domains of health assessed by the Psoriatic arthritis impact of disease score.

Methods: Post-hoc analysis of a multicentre cross-sectional study of patients with psoriatic arthritis.

A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative.

Introduction: The objective was to develop a questionnaire that can be used to calculate a score reflecting the impact of psoriatic arthritis (PsA) from the patients' perspective: the PsA Impact of Disease (PsAID) questionnaire.

Methods: Twelve patient research partners identified important domains (areas of health); 139 patients prioritised them according to importance. Numeric rating scale (NRS) questions were developed, one for each domain.

Updating the OMERACT filter: implications of filter 2.0 to select outcome instruments through assessment of "truth": content, face, and construct validity.

Objective: The Outcome Measures in Rheumatology (OMERACT) Filter provides guidelines for the development and validation of outcome measures for use in clinical research. The "Truth" section of the OMERACT Filter requires that criteria be met to demonstrate that the outcome instrument meets the criteria for content, face, and construct validity.

Methods: Discussion groups critically reviewed a variety of ways in which case studies of current OMERACT Working Groups complied with the Truth component of the Filter and what issues remained to be resolved.

Firing-rate models capture essential response dynamics of LGN relay cells.

Firing-rate models provide a practical tool for studying signal processing in the early visual system, permitting more thorough mathematical analysis than spike-based models. We show here that essential response properties of relay cells in the lateral geniculate nucleus (LGN) can be captured by surprisingly simple firing-rate models consisting of a low-pass filter and a nonlinear activation function. The starting point for our analysis are two spiking neuron models based on experimental data: a spike-response model fitted to data from macaque (Carandini et al.

Improved survival and quality of life in patients undergoing R1 pancreatic resection compared to patients with locally advanced unresectable pancreatic adenocarcinoma.

Objective: To prospectively record the clinical consequences of R1 resection of pancreatic adenocarcinoma compared to patients with locally advanced tumours not undergoing surgery.

Background: Surgery is the only potentially curative treatment of pancreatic cancer, and postoperative safety is increasing. The rate of R1 resections might also increase unintentionally as surgical procedures with curative goal become more comprehensive, and the clinical outcome requires further prospective evaluation.

Development and preliminary validation of the pancreatic cancer disease impact score.

Objective: Patient-reported outcomes are important for clinical practice and research, and should reflect what patients perceive as important. The objective of this study was to develop and preliminarily validate a brief, patient-derived, disease-specific tool, the pancreatic cancer disease impact (PACADI) score.

Methods: The development was performed in two phases.

EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis.

Objectives: The authors aim to develop European League Against Rheumatism recommendations for the role of the nurse in the management of patients with chronic inflammatory arthritis, to identify a research agenda and to determine an educational agenda.

Methods: A task force made up of a multidisciplinary expert panel including nurses, rheumatologists, occupational therapist, physiotherapist, psychologist, epidemiologist and patient representatives, representing 14 European countries, carried out the development of the recommendations, following the European League Against Rheumatism standardised operating procedures. The task force met twice.

Patient perspective workshop: moving towards OMERACT guidelines for choosing or developing instruments to measure patient-reported outcomes.

The workshop Choosing or Developing Instruments held at the Outcome Measures in Rheumatology (OMERACT) 10 meeting was designed to help participants think about the underlying methods of instrument development. Conference pre-reading material and 3 brief introductory presentations elaborated the issues, and participants broke into discussion groups before reconvening to share insights, engage in a more general discussion of the issues, and vote on recommendations. Tradeoffs between using current imperfect measures and the long and complex process of developing new instruments were considered, together with the need for rigor in patient-reported outcome (PRO) instrument development.

Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative.

Objective: A patient-derived composite measure of the impact of rheumatoid arthritis (RA), the rheumatoid arthritis impact of disease (RAID) score, takes into account pain, functional capacity, fatigue, physical and emotional wellbeing, quality of sleep and coping. The objectives were to finalise the RAID and examine its psychometric properties.

Methods: An international multicentre cross-sectional and longitudinal study of consecutive RA patients from 12 European countries was conducted to examine the psychometric properties of the different combinations of instruments that might be included within the RAID combinations scale (numeric rating scales (NRS) or various questionnaires).