Search results for " Outcome measures"
showing 10 items of 49 documents
Development of the Angioedema Control Test—A patient‐reported outcome measure that assesses disease control in patients with recurrent angioedema
2019
Background Recurrent angioedema (AE) is an important clinical problem in the context of chronic urticaria (mast cell mediator-induced), ACE-inhibitor intake and hereditary angioedema (both bradykinin-mediated). To help patients obtain control of their recurrent AE is a major treatment goal. However, a tool to assess control of recurrent AE is not yet available. This prompted us to develop such a tool, the Angioedema Control Test (AECT). Methods After a conceptional framework was developed for the AECT, a list of potential AECT items was generated by a combined approach of patient interviews, literature review and expert input. Subsequent item reduction was based on impact analysis, inter-it…
Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer
2017
Contains fulltext : 174665.pdf (Publisher’s version ) (Open Access) PURPOSE: For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. METHODS: MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures…
Harmonization of real-world studies in multiple sclerosis: Retrospective analysis from the rirems group
2020
Background: Worldwide multiple sclerosis (MS) centers have coordinated their efforts to use data acquired in clinical practice for real-world observational studies. In this retrospective study, we aim to harmonize outcome measures, and to evaluate their heterogeneity within the Rising Italian Researchers in MS (RIReMS) study group. Methods: RIReMS members filled in a structured questionnaire evaluating the use of different outcome measures in clinical practice. Thereafter, thirty-four already-published papers from RIReMS centers were used for heterogeneity analyses, using the DerSimonian and Laird random-effects method to compute the between-study variance (τ2). Results: Based on questionna…
Factors associated with the quality of life of subjects with facial disfigurement due to surgical treatment of head and neck cancer
2018
Background Facial disfigurement has been considered one of the most challenging consequences of the surgical treatment for head and neck cancer patients, mainly due to the importance of the facial region for the personal identity, body self-image and interpersonal interactions, which might affect negatively the quality of life. The aim of this study was to assess factors associated with the quality of life of subjects with facial disfigurement due to surgical treatment. Material and Methods Clinical data were retrieved from 103 patient’s medical records and quality of life data were collected using the Functional Assessment of Cancer Therapy (FACT-H&N) questionnaire. Moreover, the degree of…
Relationship between device acceptance and patient-reported outcomes in Left Ventricular Assist Device (LVAD) recipients
2019
AbstractThe number of Left Ventricular Assist Devices (LVADs) implanted each year is rising. Nevertheless, there are minimal data on device acceptance after LVAD implant, and on its relationship with patient-reported outcomes. We designed a cross-sectional study to address this knowledge gap and test the hypothesis that low device acceptance is associated with poorer quality of life, depression and anxiety. Self-report questionnaires were administered to assess quality of life (12-item Kansas City Cardiomyopathy Questionnaire quality of life subscale), level of anxiety (7-item Generalized Anxiety Disorder; GAD-7), level of depression (9-item Patient Health Questionnaire; PHQ-9) and device a…
Italian version of the Chicago multiscale depression inventory: translation, adaptation and testing in people with multiple sclerosis.
2004
Depression is the commonest psychiatric disturbance in people with multiple sclerosis (MS), with prevalence higher than in the general population and other chronic diseases. However, accurate assessment of depressive symptoms can be biased by somatic symptoms which are part of both MS and depression. We translated and adapted into Italian the Chicago multiscale depression inventory (CMDI) and assessed its acceptability, internal consistency and test-retest reliability in 213 MS outpatients and 213 individually matched healthy controls. The questionnaire was also tested in 32 people with major depression. Acceptability, internal consistency, and test-retest reliability were good overall. We …
Ten-year follow-up of health-related quality of life among ambulatory persons with multiple sclerosis at baseline
2016
Purpose The aim of this 10-year follow-up study was to determine changes in health-related quality of life (HRQoL) over time among ambulatory persons with MS (PwMS) at the baseline using generic and disease-specific instruments. Methods Of 109 independently walking PwMS included in a population-based study in 2002, 77 (70.6 %) were re-assessed in 2012. HRQoL was captured using the 36-Item Short Form Survey Instrument (RAND-36), 15D instrument (15D), and the Multiple Sclerosis Quality of Life-54 (MSQOL-54). Repeated-measures ANOVA and effect size (ES) calculations (Cohen’s d) were used in the statistical analysis. Results The RAND-36 physical health composite score (p = 0.003, ES = 0.26) and…
Assessment of Construct Validity of the Oswestry Disability Index and the Scoliosis Research Society–30 Questionnaire (SRS-30) in Patients With Degen…
2019
Observational cohort study.To measure and compare the structural validity of the Oswestry Disability Index (ODI) and the Scoliosis Research Society-30 (SRS-30) questionnaire in an adult population with prolonged degenerative thoracolumbar disease.The ODI and the SRS-30 are commonly used patient-reported outcome instruments to assess back-specific disability and symptoms related to scoliosis. Still, these instruments have not been validated for degenerative spinal disease with different stages of deformity.Altogether, 637 consecutive adult patients with degenerative spinal pathologies were included. The patients completed the ODI (version 2.0), the 23 preoperative items of the SRS-30, a gene…
Adalimumab efficacy in enteropathic spondyloarthritis: A 12-mo observational multidisciplinary study
2017
AIM To report adalimumab (Ada) efficacy on articular-gastrointestinal disease and health-related quality of life (HRQoL) in patients with enteropathic spondyloarthritis (ES). METHODS A cohort of 52 patients with ES was evaluated in the departments of gastroenterology and internal medicine. At baseline, all patients underwent assessment by an integrated gastro-rheumatologic evaluation of articular and gastrointestinal activity, as well patient reported outcomes (PROs) of the HRQoL questionnaires. After this integrated evaluation and following a specific working flowchart, the Ada anti-tumor necrosis factor (TNF)-inhibitor was assigned to a cohort of 30 patients and its clinical efficacy was …
Design and validation of a patient-reported outcome measure scale in acute pancreatitis: the PAN-PROMISE study
2021
ObjectiveThis study aimed to develop and validate a patient-reported outcome measure (PROM) in acute pancreatitis (AP) as an endpoint centred on the patient.DesignA PROM instrument (PAtieNt-rePoRted OutcoMe scale in acute pancreatItis, an international proSpEctive cohort study, PAN-PROMISE scale) was designed based on the opinion of patients, professionals and an expert panel. The scale was validated in an international multicentre prospective cohort study, describing the severity of AP and quality of life at 15 days after discharge as the main variables for validation. The COSMIN (COnsensus-based Standards for the selection of health status Measurement INstruments) methodology was applied.…