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Patient related Outcome Measures

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https://www.readbyqxmd.com/read/29670413/quality-of-life-after-esophageal-resection
#1
Wendy Jo Svetanoff, Rose McGahan, Saurabh Singhal, Carrie Bertellotti, Sumeet K Mittal
Introduction: Esophageal resection is the primary treatment for malignant esophageal disease and the last resort for benign end-stage esophageal disease. There is a paucity of research comparing the long-term quality of life (QoL) following surgery among these two populations. The aim of this study was to examine the patient reported QoL after esophageal resection using questionnaires focusing on general well-being and esophageal-specific symptoms. Methods: A prospectively maintained database of post-operatively administered European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) with supplemental esophageal cancer-specific questionnaires (OES-18) was queried after institutional review board approval through Creighton University School of Medicine...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29662331/psychosocial-distress-and-the-preferred-method-of-delivery-of-mind-body-interventions-among-patients-with-head-and-neck-cancer
#2
Pinky Budhrani-Shani, Nicole G Chau, Donna L Berry
Objective: To describe the psychosocial distress of head-and-neck cancer patients at the completion of therapy and the interest in and the preferred method of delivery of mind-body interventions (MBIs) among head-and-neck cancer patients. Materials and methods: A descriptive, cross-sectional design was used to measure sleep disturbance, depression, anxiety, and the interest in and the preference for MBIs using anonymous, self-report questionnaires among a convenience sample of 30 males at their 3-month follow-up...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29588623/national-institutes-of-health-toolbox-emotion-battery-for-english-and-spanish-speaking-adults-normative-data-and-factor-based-summary-scores
#3
Ida Babakhanyan, Benjamin S McKenna, Kaitlin B Casaletto, Cindy J Nowinski, Robert K Heaton
Background: The National Institutes of Health Toolbox Emotion Battery (NIHTB-EB) is a "common currency", computerized assessment developed to measure the full spectrum of emotional health. Though comprehensive, the NIHTB-EB's 17 scales may be unwieldy for users aiming to capture more global indices of emotional functioning. Methods: NIHTB-EB was administered to 1,036 English-speaking and 408 Spanish-speaking adults as a part of the NIH Toolbox norming project...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29497339/quality-of-life-and-burden-of-morbidity-in-primary-care-users-with-multimorbidity
#4
Michele Peters, Laura Kelly, Caroline M Potter, Crispin Jenkinson, Elizabeth Gibbons, Julien Forder, Ray Fitzpatrick
Purpose: The aim of this study was to assess the quality of life, number of diseases and burden of morbidity of multimorbid primary care users and whether a simple disease count or a multimorbidity burden score is more predictive of quality of life. Patients and methods: Primary care patients with at least 1 of 11 specified chronic conditions were invited to participate in a postal survey. Participants completed the Disease Burden Impact Scale (DBIS) questionnaire, the five dimension-five level Euro-Qol (EQ-5D-5L) and standard demographics questions...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29491723/comorbidity-in-us-patients-with-multiple-sclerosis
#5
Natalie C Edwards, Michael Munsell, Joseph Menzin, Amy L Phillips
Objective: To assess the trends in the prevalence of comorbidities in US patients with multiple sclerosis (MS), and the association of demographic characteristics with the presence of comorbidities. Study design: A retrospective analysis was conducted from a sample of 5 million patients from the IMS Health Real World Data Adjudicated Claims - US database. Methods: Comorbidity in patients with MS was assessed by year (2006-2014), and logistic regression models evaluated the association of age, sex, and region with select comorbidities...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29467584/pcornet-s-collaborative-research-groups
#6
EDITORIAL
Mark J Pletcher, Christopher B Forrest, Thomas W Carton
The Patient-Centered Outcomes Research Institute (PCORI) launched a multi-institutional "network of networks" in 2013 - Patient-Centered Clinical Research Network (PCORnet) - that is designed to conduct clinical research that is faster, less expensive, and more responsive to the information needs of patients and clinicians. To enhance cross-network and cross-institutional collaboration and catalyze the use of PCORnet, PCORI has supported formation of 11 Collaborative Research Groups focusing on specific disease types (e...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29430201/outcomes-in-adult-pectus-excavatum-patients-undergoing-nuss-repair
#7
REVIEW
MennatAllah M Ewais, Shivani Chaparala, Rebecca Uhl, Dawn E Jaroszewski
Pectus excavatum (PEx) is one of the most common congenital chest wall deformities. Depending on the severity, presentation of PEx may range from minor cosmetic issues to disabling cardiopulmonary symptoms. The effect of PEx on adult patients has not been extensively studied. Symptoms may not occur until the patient ages, and they may worsen over the years. More recent publications have implied that PEx may have significant cardiopulmonary implications and repair is of medical benefit. Adults presenting for PEx repair can undergo a successful repair with a minimally invasive "Nuss" approach...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29403322/psychological-treatments-for-the-management-of-postsurgical-pain-a-systematic-review-of-randomized-controlled-trials
#8
REVIEW
Judith L Nicholls, Muhammad A Azam, Lindsay C Burns, Marina Englesakis, Ainsley M Sutherland, Aliza Z Weinrib, Joel Katz, Hance Clarke
Background: Inadequately managed pain is a risk factor for chronic postsurgical pain (CPSP), a growing public health challenge. Multidisciplinary pain-management programs with psychological approaches, including cognitive behavioral therapy (CBT), acceptance and commitment therapy (ACT), and mindfulness-based psychotherapy, have shown efficacy as treatments for chronic pain, and show promise as timely interventions in the pre/perioperative periods for the management of PSP. We reviewed the literature to identify randomized controlled trials evaluating the efficacy of these psychotherapy approaches on pain-related surgical outcomes...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29398925/data-quality-floor-and-ceiling-effects-and-test-retest-reliability-of-the-mild-cognitive-impairment-questionnaire
#9
Katherine Dean, Zuzana Walker, Crispin Jenkinson
Background: The Mild Cognitive Impairment Questionnaire (MCQ) is a 13-item measure that assesses health-related quality of life (HRQoL) in people with mild cognitive impairment (PWMCI); it has two domains assessing the emotional and practical effects. Objective: The aim of this study was to assess the psychometric properties of the MCQ. Design: This is a longitudinal questionnaire-based study. Setting: The participants were recruited from the memory clinics and research databases in the South of England...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29391839/impact-of-siltuximab-on-patient-related-outcomes-in-multicentric-castleman-s-disease
#10
REVIEW
Jenna Sitenga, Gregory Aird, Aabra Ahmed, Peter T Silberstein
Multicentric Castleman's disease (MCD) is a rare, widespread lymphoproliferative disorder and a life-threatening disease involving hyperactivity of the immune system, excessive proinflammatory cytokine release, immune cell proliferation, and organ system dysfunction. Interleukin-6 (IL-6) is a cytokine that plays a key role in the pathogenesis of MCD, as it is involved in the synthesis of acute-phase reactants and aids in the induction of B-cell proliferation. Siltuximab is an anti-IL-6 chimeric monoclonal antibody that acts as a novel treatment modality to bind to IL-6 with high affinity, thus neutralizing the cytokine bioactivity and inhibiting B-cell proliferation...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29379322/health-related-quality-of-life-in-anca-associated-vasculitis-and-item-generation-for-a-disease-specific-patient-reported-outcome-measure
#11
Joanna C Robson, Jill Dawson, Peter F Cronholm, Nataliya Milman, Katherine S Kellom, Susan Ashdown, Ebony Easley, John T Farrar, Don Gebhart, Georgia Lanier, Carol A McAlear, Jacqueline Peck, Raashid A Luqmani, Judy A Shea, Gunnar Tomasson, Peter A Merkel
Objective: The antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are multisystem diseases of the small blood vessels. Patients experience irreversible damage and psychological effects from AAV and its treatment. An international collaboration was created to investigate the impact of AAV on health-related quality of life (HRQoL), and develop a disease-specific patient-reported outcome measure to assess outcomes of importance to patients. Methods: Patients with AAV from the UK, USA, and Canada were interviewed to identify salient aspects of HRQoL affected by AAV...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29343994/calibration-and-validation-of-an-item-bank-for-measuring-general-physical-function-of-patients-in-medical-rehabilitation-settings
#12
Karon F Cook, Michael A Kallen, Deanna Hayes, Daniel Deutscher, Julie M Fritz, Mark W Werneke, Jerome E Mioduski
Objective: The objective of this study was to report the item response theory (IRT) calibration of an 18-item bank to measure general physical function (GPF) in a wide range of conditions and evaluate the validity of the derived scores. Methods: All 18 items were administered to a large sample of patients (n=2337) who responded to the items in the context of their outpatient rehabilitation care. The responses, collected 1997- 2000, were modeled using the graded response model, an IRT model appropriate for items with two or more response options...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29317850/long-term-safety-and-real-world-effectiveness-of-fingolimod-in-relapsing-multiple-sclerosis
#13
REVIEW
Charlotte Druart, Souraya El Sankari, Vincent van Pesch
With a growing number of disease-modifying therapies becoming available for relapsing multiple sclerosis, there is an important need to gather real-world evidence data regarding long-term treatment effectiveness and safety in unselected patient populations. Although not providing as high a level of evidence as randomized controlled trials, and prone to bias, real-world studies from observational studies or registries nevertheless provide crucial information on real-world outcomes of a given therapy. In addition, evaluation of treatment satisfaction and impact on quality of life are increasingly regarded as complementary outcome measures...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29263708/a-questionnaire-based-audit-to-assess-overall-experience-and-convenience-among-patients-using-vaginal-progesterone-tablets-lutigest-%C3%A2-for-luteal-phase-support-during-ivf-treatment
#14
Polly Heine, Laura Sellar, Sue Whitten, Priti Bajaj
Purpose: The aim of this audit was to assess the overall experience and patient convenience of vaginal progesterone tablets (Lutigest® , marketed as Endometrin® in the USA) used for luteal phase support (LPS) during in vitro fertilization (IVF) treatment. Patients and methods: This questionnaire-based audit included responses from 100 patients undergoing IVF treatment at six IVF clinics in the UK from September 2015 to November 2016. Fourteen days after starting progesterone supplementation for LPS during their IVF treatment, patients rated overall experience and perceived convenience of the prescribed progesterone by completing a questionnaire...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29263707/psychometric-validation-of-the-sf-36-health-survey-in-light-chain-amyloidosis-results-from-community-based-and-clinic-based-samples
#15
Michelle K White, Kristen L McCausland, Vaishali Sanchorawala, Spencer D Guthrie, Martha S Bayliss
Background: Light chain (AL) amyloidosis, a rare and life-threatening protein misfolding disorder, causes organ damage and severely impacts health-related quality of life (HRQoL). No patient-reported outcome (PRO) HRQoL measure has been validated for use in an AL amyloidosis patient population, leaving a gap for researchers conducting observational studies and clinical trials for drug development. The SF-36 Health Survey (SF-36) has been the most frequently used PRO in AL amyloidosis studies to date, and early qualitative validation studies support its use in this population...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29184456/validating-the-patient-experience-with-treatment-and-self-management-pets-a-patient-reported-measure-of-treatment-burden-in-people-with-diabetes
#16
Elizabeth A Rogers, Kathleen J Yost, Jordan K Rosedahl, Mark Linzer, Deborah H Boehm, Azra Thakur, Sara Poplau, Roger T Anderson, David T Eton
Aims: To validate a comprehensive general measure of treatment burden, the Patient Experience with Treatment and Self-Management (PETS), in people with diabetes. Methods: We conducted a secondary analysis of a cross-sectional survey study with 120 people diagnosed with type 1 or type 2 diabetes and at least one additional chronic illness. Surveys included established patient-reported outcome measures and a 48-item version of the PETS, a new measure comprised of multi-item scales assessing the burden of chronic illness treatment and self-care as it relates to nine domains: medical information, medications, medical appointments, monitoring health, interpersonal challenges, health care expenses, difficulty with health care services, role activity limitations, and physical/mental exhaustion from self-management...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29184455/using-proms-to-guide-patients-and-practitioners-through-the-head-and-neck-cancer-journey
#17
REVIEW
Simon N Rogers, Brittany Barber
The measurement of patient-reported outcome measures (PROMs) following head and neck cancer (HNC) has the capacity to substantially enhance the care of patients and their care-givers following the diagnosis and treatment of HNC. Literature concerning PROMs has increased exponentially in the past 2 decades, producing a vast array of data upon which the multidisciplinary team can reflect. For this review, "Handle On QOL" has been used as a source of references to illustrate the points raised. PROMs are contextualized by considering the clinically-distinct key stages that cancer patients endure: diagnosis, treatment, acute toxicity, early recovery, late effects, recurrence, and palliation...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29138609/non-valvular-atrial-fibrillation-impact-of-apixaban-on-patient-outcomes
#18
REVIEW
Adam Ioannou, Irene Tsappa, Sofia Metaxa, Constantinos G Missouris
Atrial fibrillation is the most common arrhythmia worldwide, and carries a significantly increased risk of thromboembolic stroke. Initially, vitamin K antagonists were used as stroke prophylaxis; but more recently, a group of drugs known as novel oral anticoagulants have been developed. Apixaban belongs to this group of drugs, and is a factor Xa inhibitor that has emerged as a popular pharmacological agent worldwide. In this review, we will provide an overview of the pivotal trials in the development of apixaban, while also critically evaluating the new emerging real-world data, and discussing the effectiveness, safety, economic viability and future prospects of apixaban and how it impacts on patient outcomes in those with non-valvular atrial fibrillation...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29089790/a-pilot-study-of-subjective-well-being-in-colorectal-cancer-patients-and-their-caregivers
#19
Janet Graham, Pavlina Spiliopoulou, Rob Arbuckle, Julie Ann Bridge, James Cassidy
BACKGROUND: Traditional endpoints in oncology are based on measuring the tumor size and combining this with a time factor. Current studies with immunotherapy show that even when median survival is unaltered, a significant proportion of patients can achieve prolonged survival. Objective tumor response does not always mean "overall" improvement, especially if toxicity is harsh. Novel agents are significantly expensive, and it is therefore crucial to measure the impact on "quality" of life, in addition to "quantity"...
2017: Patient related Outcome Measures
https://www.readbyqxmd.com/read/28979171/the-health-and-life-path-of-rare-disease-patients-results-of-the-2015-french-barometer
#20
Thomas Heuyer, Sonia Pavan, Christine Vicard
PURPOSE: A barometer has been set up to provide better knowledge about the daily situation of French rare disease (RD) patients, their families and relatives, in order to contribute to the elaboration of improvement measures. This report focuses on the care and life path of RD patients. PATIENTS AND METHODS: A preliminary survey was carried out with three patients, five parents and three RD experts to identify the main hurdles and disruptions in the life path of RD patients...
2017: Patient related Outcome Measures
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