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Patient related Outcome Measures

Isha Patel, Travis Chapman, Fabian Camacho, Shameen Shrestha, Jongwha Chang, Rajesh Balkrishnan, Steven R Feldman
Background: There is a lack of research in the USA comparing patient satisfaction with pediatricians and other primary care physicians (PCPs). We examined and compared patient satisfaction toward their pediatricians and PCPs and characterized factors associated with higher patient satisfaction in these two groups. Methods: A random coefficient model with random slope and intercept was fit to the data, with patient satisfaction as a function of pediatrician/PCP, covariates, and physician random effects...
2018: Patient related Outcome Measures
William E Strauss, Michael Auerbach
Most physicians appear to be aware of the health consequences of advanced anemia, especially in the acute setting, frequently responding with a not inconsequential therapeutic default of transfusion. In contrast, the profound impact that chronic anemia, of any degree, may have on a patient's performance is underappreciated. The focus of this review is to 1) delineate the consistent and broad impact of anemia on patient quality of life as documented by multiple well-validated patient-reported outcome instruments and 2) demonstrate the essential normalization of the debilitation as assessed by these instruments following the administration of intravenous iron...
2018: Patient related Outcome Measures
Chiara Crotti, Martina Biggioggero, Andrea Becciolini, Ennio Giulio Favalli
In the last few decades, strategies for the management of rheumatoid arthritis (RA) have been increasingly oriented toward more comprehensive control of the disease, taking into account even RA extra-articular manifestations, comorbidities, and the patient's perception about the disease. The need for improving the shared decision-making process suggested by European League Against Rheumatism recommendations is leading to an increasing interest in the role of patient-reported outcomes (PROs) beside the usual more objective criteria for defining clinical response based on disease-activity composite indices...
2018: Patient related Outcome Measures
Alicia Padilla Galo, Marina Labor, Angelica Tiotiu, Ilaria Baiardini, Nicola Scichilone, Fulvio Braido
Approximately 5%-10% of asthmatics suffer from severe asthma. New biological treatments represent a great opportunity to reduce asthma burden and to improve asthma patients' lives. Reslizumab will soon be available in several European countries. This anti-IL-5 IgG4/κ monoclonal antibody, administered intravenously at a dose of 3 mg/kg over 20-50 minutes every 4 weeks, has been shown to be safe and effective in patients with 400 eosinophils/μL or more in their peripheral blood. The clinical effects in reducing asthma exacerbations and in improving the quality of life and lung function are clear, but further research is needed to determine the best biological compound for a specific cluster of patients...
2018: Patient related Outcome Measures
Norman Briffa
Decision aids as part of shared care are underutilized in surgery. Patient-Reported Outcome Measures (PROMS) are rapidly gaining interest as useful tools for various purposes in all fields of surgery. In this article, the author describes how PROMS can be used as decision aids in shared care between patients and health care workers, including surgeons.
2018: Patient related Outcome Measures
Liza W Claus, Joseph J Saseen
Gouty arthritis is one of the most common rheumatic diseases, and the prevalence continues to rise, which is likely related to increased incidence of comorbidities, lifestyle factors, and suboptimal utilization of urate-lowering therapy. In recent years, multiple new guidelines have been published along with the approval of novel drug therapies. Still, gout remains a poorly controlled disease state that is accompanied by a reduced health-related quality of life, increased health care utilization, and overall negative socioeconomic effects, all of which have a negative impact on patient-related health outcomes...
2018: Patient related Outcome Measures
Deb Roberts
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient's perspective. One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned...
2018: Patient related Outcome Measures
M Sean Peach, Daniel M Trifiletti, Carolyn Vachani, Karen Arnold-Korzeniowski, Christina Bach, Margaret Hampshire, James M Metz, Christine E Hill-Kayser
Purpose: Head and neck cancer is occurring in an increasingly younger patient population, with treatment toxicity that can cause significant morbidity. Using a patient guided, Internet-based survivorship care plan program, we obtained and looked at patterns of patient-reported outcomes data from survivors seeking information after treatment for head and neck cancer. Methods: The Internet-based OncoLife and LIVESTRONG Care Plan programs were employed, which design unique survivorship care plans based on patient-reported data...
2018: Patient related Outcome Measures
David Morley, Sarah Dummett, Laura Kelly, Crispin Jenkinson
Background: The recently validated Oxford Participation and Activities Questionnaire (Ox-PAQ) is a 23-item patient-reported outcome measure, theoretically grounded in the World Health Organization International Classification of Functioning, Disability and Health. The measure is specifically designed to assess participation and activity in people experiencing a range of health conditions. Initial validation of the Ox-PAQ identified three domains: Routine Activities (14 items), Emotional Well-Being (5 items), and Social Engagement (4 items)...
2018: Patient related Outcome Measures
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
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
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
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
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
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
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
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
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
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
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
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