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Patient related Outcome Measures

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https://www.readbyqxmd.com/read/30013409/a-novel-method-of-proxy-reporting-questionnaire-based-measures-of-health-related-quality-of-life-of-people-with-dementia-in-residential-care-a-psychometric-evaluation
#1
Sarah C Smith, Aa Jolijn Hendriks, Jemma Regan, Nick Black
Background: In research in residential care, health-related quality of life (HRQL) is usually measured using either observational methods or standardized questionnaires. DEMQOL-Proxy is a standardized questionnaire measuring HRQL of people with dementia and is usually reported by a family carer. However, not all residents have a family carer who visits often enough to act as a proxy. Objectives: We evaluated the psychometric performance of DEMQOL-Proxy when reported on behalf of people with dementia in residential care by a "trained proxy" (DEMQOL-Proxy-TP)...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/30013408/quality-of-life-in-coeliac-disease-qualitative-interviews-to-develop-candidate-items-for-the-coeliac-disease-assessment-questionnaire
#2
Helen Crocker, Crispin Jenkinson, Michele Peters
Background: Coeliac-specific measures have been criticized for not complying with current guidance on the development of patient-reported outcome measures (PROMs). The aim of this study was to develop a measure to assess health-related quality of life in adults with coeliac disease (CD), in accordance with current guidance for PROM development. Methods: In-depth qualitative interviews were conducted with adults with CD. A thematic analysis was undertaken to develop a coding framework...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29950913/comparison-of-statistical-approaches-for-analyzing-incomplete-longitudinal-patient-reported-outcome-data-in-randomized-controlled-trials
#3
Ines Rombach, Crispin Jenkinson, Alastair M Gray, David W Murray, Oliver Rivero-Arias
Purpose: Missing data are a potential source of bias in the results of RCTs, but are often unavoidable in clinical research, particularly in patient-reported outcome measures (PROMs). Maximum likelihood (ML), multiple imputation (MI), and inverse probability weighting (IPW) can be used to handle incomplete longitudinal data. This paper compares their performance when analyzing PROMs, using a simulation study based on an RCT data set. Methods: Realistic missing-at-random data were simulated based on patterns observed during the follow-up of the knee arthroscopy trial (ISRCTN45837371)...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29950912/introduction-of-a-web-portal-for-an-individual-health-management-and-observational-health-data-sciences
#4
Dieter Melchart, Axel Eustachi, Stephan Gronwald, Erich Wühr, Kristina Wifling, Beatrice E Bachmeier
Background: There is a global trend to a stronger active involvement of persons in the maintenance and restoring of health. The Competence Centre for Complementary Medicine and Naturopathy (CoCoNat) of the Technical University of Munich (TUM) has developed a lifestyle concept to enable each individual to manage his or her health - Individual Health Management (IHM) - and a web-based health portal named Virtual Tool for Education, Reporting, Information and Outcomes (VITERIO® ), which addresses these needs for practice and research...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29950911/the-relational-aspects-of-care-questionnaire-item-reduction-and-scoring-using-inpatient-and-accident-and-emergency-data-in-england
#5
Laura Kelly, Steve Sizmur, Susanne Käsbauer, Jenny King, Robyn Cooper, Crispin Jenkinson, Chris Graham
Purpose: The Relational Aspects of Care Questionnaire (RAC-Q) is an electronic instrument which has been developed to assess staff's interactions with patients when delivering relational care to inpatients and those accessing accident and emergency (A&E) services. The aim of this study was to reduce the number of questionnaire items and explore scoring methods for "not applicable" response options. Patients and methods: Participants (n=3928) were inpatients or A&E attendees across six participating hospital trusts in England during 2015-2016...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29922103/utilizing-the-total-design-method-in-medicine-maximizing-response-rates-in-long-non-incentivized-personal-questionnaire-postal-surveys
#6
Fawz Kazzazi, Rebecca Haggie, Parto Forouhi, Nazar Kazzazi, Charles M Malata
Introduction: Maximizing response rates in questionnaires can improve their validity and quality by reducing non-response bias. A comprehensive analysis is essential for producing reasonable conclusions in patient-reported outcome research particularly for topics of a sensitive nature. This often makes long (≥7 pages) questionnaires necessary but these have been shown to reduce response rates in mail surveys. Our work adapted the "Total Design Method," initially produced for commercial markets, to raise response rates in a long (total: 11 pages, 116 questions), non-incentivized, very personal postal survey sent to almost 350 women...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29881317/development-and-validation-of-a-revised-instrument-to-measure-burden-of-long-term-medicines-use-the-living-with-medicines-questionnaire-version-3
#7
Barbra Katusiime, Sarah A Corlett, Janet Krska
Objectives: To revise the Living with Medicines Questionnaire version 2 (LMQ-2), which measures the burden of using prescribed medicines, to include cost and expand side effects and social issues. Methods: New statements were developed and validated through cognitive interviews with medicine users, and these and a global visual analog scale (VAS) were added to the 42-item LMQ-2. Construct validity was assessed through exploratory and confirmatory factor analyses using an online public survey...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29785146/provider-use-of-a-participatory-decision-making-style-with-youth-and-caregivers-and-satisfaction-with-pediatric-asthma-visits
#8
Betsy Sleath, Delesha M Carpenter, Imelda Coyne, Scott A Davis, Claire Hayes Watson, Ceila E Loughlin, Nacire Garcia, Daniel S Reuland, Gail E Tudor
Background: We conducted a randomized controlled trial to test the effectiveness of an asthma question prompt list with video intervention to engage the youth during clinic visits. We examined whether the intervention was associated with 1) providers including youth and caregiver inputs more into asthma treatment regimens, 2) youth and caregivers rating providers as using more of a participatory decision-making style, and 3) youth and caregivers being more satisfied with visits. Methods: English- or Spanish-speaking youth aged 11-17 years with persistent asthma and their caregivers were recruited from four pediatric clinics and randomized to the intervention or usual care groups...
2018: Patient related Outcome Measures
https://www.readbyqxmd.com/read/29670413/quality-of-life-after-esophageal-resection
#9
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
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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