Search results for "patient-reported outcomes"
showing 9 items of 19 documents
Patient-reported impact of Charcot-Marie-Tooth disease: protocol for a real-world digital lifestyle study
2021
Abstract Background Charcot-Marie-Tooth disease (CMT) is a rare, chronic, progressive motor and sensory neuropathy that affects the peripheral nervous system, leading to progressive, predominantly distal muscle weakness, atrophy, sensory loss and progressive limb dysfunction. As with many rare diseases, there is a lack of patient-reported data with which to understand and address patient needs. This study aims to explore the real-world impact of CMT from the patient perspective. Methods This is a prospective, digital lifestyle study of at least 2,000 people with CMT, >18 years, resident in the following countries: France, Germany, Italy, Spain, the UK and the USA. Participants will be re…
Initial Experience with Radical Prostatectomy Following Holmium Laser Enucleation of the Prostate
2021
Background: Although an increasing number of prostate cancer (PCa) patients received holmium laser enucleation of the prostate (HoLEP) previously for benign prostatic obstruction (BPO), there is still no evidence regarding the outcomes of radical prostatectomy (RP) in this setting. Objective: To assess functional and oncological results of RP in PCa patients who received HoLEP for BPO previously in a contemporary multi-institutional cohort. Design, setting, and participants: A total of 95 patients who underwent RP between 2011 and 2019 and had a history of HoLEP were identified in two institutions. Functional as well as oncological follow-up was prospectively assessed and retrospectively an…
Exploring the Relationship between Disease Awareness and Outcomes in Patients with Chronic Obstructive Pulmonary Disease
2020
<b><i>Background:</i></b> Disease awareness is a challenge in the management of chronic obstructive pulmonary disease (COPD). <b><i>Objectives:</i></b> The aim of this analysis was to explore the association between COPD optimal and suboptimal awareness, clinical parameters, and the following patient-reported outcomes: modified Medical Research Council (mMRC), Treatment Satisfaction Questionnaire (TSQM-9), COPD Assessment Test (CAT), Morisky Medication-Taking Adherence Scale (MMAS-4), and Brief Illness Perception Questionnaire (B-IPQ). <b><i>Methods:</i></b> This post hoc analysis of the SAT study included all enrolled …
Effects of a structured educational intervention in moderate-to-severe elderly asthmatic subjects.
2019
Background: Adherence to inhaled drugs is linked to patients’ satisfaction with their device, and an incorrect use can negatively affect the outcomes of asthma treatment. We speculated that this is particularly true in elderly asthmatic subjects. Aim: We performed a national pre-post interventional multicentre study, enrolling moderate-to-severe asthmatic subjects aged ≥65 years treated with fixed inhaled combination drugs by dry powder inhaler (DPI) or pressurized metered dose inhaler (pMDI). Adherence and critical errors were evaluated by means of validated questionnaires at first visit (V1) and after 3–6 months (V2). At V1, subjects underwent intensive training on the correct use of the…
Relationship Between Patient-Reported Outcomes and Clinical Outcomes in Patients With Morquio A Syndrome
2019
Abstract This cross-sectional analysis assessed the correlation between patient-reported outcomes (PROs) and clinical outcomes in 24 German patients with Morquio A. Clinical outcomes included 6-minute walk test (6MWT), 3-minute stair climb (3MSC) test, and joint range of motion as measures for endurance/mobility, forced vital capacity (FVC) and maximum voluntary ventilation (MVV) as measures for respiratory function, and height as an important manifestation. The PROs included the EuroQoL (EQ) 5D-5L (EQ5D-5L), to measure health-related QoL (HRQoL), and patients’ rating of their ability to walk, climb, or breathe. In adults, endurance and pulmonary function measures and height showed strong a…
Muscle-tendon morphomechanical properties of non-surgically treated Achilles tendon 1-year post-rupture
2022
Background\ud Achilles tendon rupture appears to alter stiffness and length of the tendon. These alterations may affect the function of tendon in force transmission and in energy storage and recovery. We studied the mechanical properties of the Achilles' tendon post-rupture and their association with function.\ud Methods\ud Twenty-four (20 males, 4 females) participants (mean age: 43 y, 176 cm, 81 kg) were recruited. Ultrasonography and dynamometry were used to assess the muscle-tendon unit morphological and mechanical properties of non-surgically treated patients 1-year post rupture.\ud Findings\ud Injured tendons were longer with difference of 1.8 cm (95%CI: 0.5–1.9 cm; P < 0.001), and th…
Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research
2017
Executive summary A concerted effort to tackle the global health problem posed by traumatic brain injury (TBI) is long overdue. TBI is a public health challenge of vast, but insufficiently recognised, proportions. Worldwide, more than 50 million people have a TBI each year, and it is estimated that about half the world’s population will have one or more TBIs over their lifetime. TBI is the leading cause of mortality in young adults and a major cause of death and disability across all ages in all countries, with a disproportionate burden of disability and death occurring in low-income and middle-income countries (LMICs). It has been estimated that TBI costs the global economy approximately $…
Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group
2021
Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm hei…
Can adjunctive corticosteroid therapy improve patient-centered outcomes following third molar surgery? A systematic review
2021
Third molar surgery is frequently associated with postoperative discomfort such as pain, edema and trismus. We aimed to evaluate the current evidence on the efficacy of adjunctive corticosteroid therapy in improving patient-centered outcomes following third molar surgery.This systematic review assessed and searched PubMed, Google scholar, Scopus, web of science, clinicaltrials.gov and Cochrane central for controlled trials, up to May 2021. The primary outcome measures were patient-centered outcomes such as quality of life following the use of adjunctive corticosteroid therapy in third molar removal. Only randomized controlled trials published in English language were included.A total of 355…