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https://www.readbyqxmd.com/read/28343292/psychometric-validation-of-the-heart-failure-caregiver-questionnaire-hf-cq-%C3%A2
#1
Anna Strömberg, Nicola Bonner, Laura Grant, Bryan Bennett, Misook L Chung, Tiny Jaarsma, Marie Louise Luttik, Eldrin F Lewis, Frederico Calado, Celine Deschaseaux
BACKGROUND: The Heart Failure Caregiver Questionnaire (HF-CQ(®)) was developed to assess subjective outcomes of heart failure caregivers. The HF-CQ(®) comprises 21 questions on three domains, namely physical, emotional/psychological and lifestyle. The objective of this study was to evaluate the psychometric properties of the HF-CQ(®). METHODS: Patients (n = 150) with heart failure and their primary caregivers (n = 150) were recruited from 11 sites in USA...
March 25, 2017: Patient
https://www.readbyqxmd.com/read/28332032/qualitative-assessment-of-the-symptoms-and-impact-of-pancreatic-exocrine-insufficiency-pei-to-inform-the-development-of-a-patient-reported-outcome-pro-instrument
#2
Colin D Johnson, Rob Arbuckle, Nicola Bonner, Gary Connett, Enrique Dominguez-Munoz, Philippe Levy, Doris Staab, Nicola Williamson, Markus M Lerch
BACKGROUND: Pancreatic exocrine insufficiency (PEI) affects patients with chronic pancreatitis (CP) and cystic fibrosis (CF) who produce insufficient digestive pancreatic enzymes. Common symptoms include steatorrhoea, diarrhea, and abdominal pain. OBJECTIVE: The objective of the study was to develop and test the content validity of a patient-reported outcome (PRO) instrument assessing PEI symptoms and their impact on health-related quality of life. METHODS: Instrument development was supported by a literature review, expert physician interviews (n = 10: Germany 4, UK 3, France 3), and exploratory, qualitative, concept-elicitation interviews with patients with CF and CP with PEI (n = 61: UK 29, Germany 18, France 14) and expert physicians (n = 10)...
March 22, 2017: Patient
https://www.readbyqxmd.com/read/28315192/discrete-choice-experiment-attribute-selection-using-a-multinational-interview-study-treatment-features-important-to-patients-with-type-2-diabetes-mellitus
#3
Anna Rydén, Stephanie Chen, Emuella Flood, Beverly Romero, Susan Grandy
INTRODUCTION: Methods for discrete choice experiment (DCE) attribute and attribute-level selection have not yet been firmly established and are rarely reported in detail. This paper describes a qualitative study designed to inform the development of a DCE survey designed to examine preferences for glucagon-like peptide-1 receptor agonist (GLP-1RA) treatments among patients with type 2 diabetes mellitus. METHODS: The study involved a literature review, interviews with clinical experts, and interviews with GLP-1RA-experienced (i...
March 17, 2017: Patient
https://www.readbyqxmd.com/read/28285412/symptoms-and-impacts-in-non-metastatic-castration-resistant-prostate-cancer-qualitative-study-findings
#4
Erin L Tomaszewski, Pierre Moise, Robert N Krupnick, Jared Downing, Margaret Meyer, Shevani Naidoo, Stefan Holmstrom
OBJECTIVES: We developed a conceptual model to define key concepts associated with patients' experiences with the signs, symptoms, and impacts of non-metastatic castration-resistant prostate cancer (M0-CRPC). METHODS: A targeted review of peer-reviewed literature, and other publicly available information, identified and categorized symptoms and impacts related to early-stage prostate cancer. Semi-structured interviews with five clinical experts helped determine the most relevant and important concepts for patients with M0-CRPC...
March 11, 2017: Patient
https://www.readbyqxmd.com/read/28271387/development-of-a-patient-reported-palliative-care-specific-health-classification-system-the-pos-e
#5
Mendwas Dzingina, Irene J Higginson, Paul McCrone, Fliss E M Murtagh
BACKGROUND: Generic preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care. OBJECTIVE: Our objective was to derive a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care...
March 7, 2017: Patient
https://www.readbyqxmd.com/read/28258505/preparing-parents-to-make-an-informed-choice-about-antibiotic-use-for-common-acute-respiratory-infections-in-children-a-randomised-trial-of-brief-decision-aids-in-a-hypothetical-scenario
#6
Peter D Coxeter, Chris B Del Mar, Tammy C Hoffmann
BACKGROUND: Childhood acute respiratory infections (ARIs) are one of the most common reasons for primary care consultations and for receiving an antibiotic. Public awareness of antibiotic benefit and harms for these conditions is low. To facilitate informed decision making, ideally in collaboration with their doctor, parents need clear communication about benefits and harms. Decision aids may be able to facilitate this process. OBJECTIVE: The aim of this study was to evaluate the effectiveness of three decision aids about antibiotic use for common ARIs in children...
March 4, 2017: Patient
https://www.readbyqxmd.com/read/28247251/giving-patients-preferences-a-voice-in-medical-treatment-life-cycle-the-prefer-public-private-project
#7
EDITORIAL
Esther W de Bekker-Grob, Conny Berlin, Bennett Levitan, Karim Raza, Kalliopi Christoforidi, Irina Cleemput, Jana Pelouchova, Harald Enzmann, Nigel Cook, Mats G Hansson
No abstract text is available yet for this article.
February 28, 2017: Patient
https://www.readbyqxmd.com/read/28229377/important-treatment-outcomes-for-patients-with-psoriatic-arthritis-a-multisite-qualitative-study
#8
Emma Dures, Sarah Hewlett, Jane Lord, Clive Bowen, Neil McHugh, William Tillett
BACKGROUND: Psoriatic arthritis (PsA) is a variable and complex inflammatory condition. Symptoms can compromise physical function, reduce quality of life, and accrue significant health costs. Commonly used patient-reported outcomes largely reflect the professionals' perspective, however it is not known whether they capture what is important to patients. OBJECTIVE: The aim of our study was to identify treatment outcomes important to patients with PsA. METHODS: Eight focus groups that were audio recorded, transcribed, anonymised and analysed using inductive thematic analysis were conducted at five hospital sites...
February 22, 2017: Patient
https://www.readbyqxmd.com/read/28224296/eq-5d-5l-and-sf-6d-utility-measures-in-symptomatic-benign-thyroid-nodules-acceptability-and-psychometric-evaluation
#9
Carlos K H Wong, Brian H H Lang, Hill M S Yu, Cindy L K Lam
PURPOSE: The aim of this study was to examine the acceptability, validity, and reliability of the EuroQoL Five-Dimension Five-Level (EQ-5D-5L) and Short-Form Six-Dimension (SF-6D) health utility measures in patients with symptomatic benign thyroid nodules. METHODS: Data from a randomized controlled trial (ClinicalTrials.gov identifier: NCT02398721) of 294 patients with symptomatic benign thyroid nodules were utilized for this psychometric evaluation of health-related quality of life (HR-QOL) measurement...
February 21, 2017: Patient
https://www.readbyqxmd.com/read/28197788/self-care-of-people-with-chronic-obstructive-pulmonary-disease-a-meta-synthesis
#10
REVIEW
Marco Clari, Maria Matarese, Dhurata Ivziku, Maria Grazia De Marinis
BACKGROUND: Self-care in people with chronic obstructive pulmonary disease (COPD) can improve health-related quality of life, reduce hospital admissions and decrease dyspnoea. OBJECTIVE: This review aimed to systematically identify, evaluate and synthesise the qualitative literature on the self-care behaviours and strategies used by people with COPD. METHODS: The Joanna Briggs Institute (JBI) meta-aggregative method was followed. An electronic search of six relevant databases was conducted...
February 14, 2017: Patient
https://www.readbyqxmd.com/read/28161735/development-of-a-report-card-for-identifying-local-sublingual-immunotherapy-events-in-clinical-trials
#11
Josephine Norquist, Emuella Flood, Tiffany Tanzosh, Haojie Li, Beata Iskold, Thelma Rose Ganser, Helen Marson-Smith
BACKGROUND: The sublingual immunotherapy (SLIT) Report Card was developed to capture patient-reported local reactions from the administration of SLIT, based on the World Allergy Organization side-effect grading system. The objective was to evaluate understandability, usability, and translatability of the paper and electronic versions of the SLIT Report Card. METHODS: Adults (aged 18+ years), adolescents (aged 12-17 years), and parents/caregivers and their children (aged 5-11 years) participated in two rounds of interviews, testing the paper version in Round 1, and both the paper and electronic versions in Round 2...
February 4, 2017: Patient
https://www.readbyqxmd.com/read/28110379/-they-are-talking-about-me-but-not-with-me-a-focus-group-study-to-explore-the-patient-perspective-on-interprofessional-team-meetings-in-primary-care
#12
Jerôme Jean Jacques van Dongen, Maarten de Wit, Hester Wilhelmina Henrica Smeets, Esther Stoffers, Marloes Amantia van Bokhoven, Ramon Daniëls
BACKGROUND: The number of people with multiple chronic conditions receiving primary care services is growing. To deal with their increasingly complex health care demands, professionals from different disciplines need to collaborate. Interprofessional team (IPT) meetings are becoming more popular. Several studies describe important factors related to conducting IPT meetings, mostly from a professional perspective. However, in the light of patient-centeredness, it is valuable to also explore the patients' perspective...
January 21, 2017: Patient
https://www.readbyqxmd.com/read/28101817/seeing-is-engaging-vlogs-as-a-tool-for-patient-engagement
#13
Joy L Lee, Mary Frey, Peter Frey, Ilene L Hollin, Albert W Wu
No abstract text is available yet for this article.
January 18, 2017: Patient
https://www.readbyqxmd.com/read/28097637/moving-from-patient-advocacy-to-partnership-a-long-and-bumpy-road
#14
Durhane Wong-Rieger
Real-life experiences of grassroots patient organizations across a variety of diseases, countries and contexts have been used to develop a four-mode framework of the transition from patient advocacy to partnership, defined by one axis as individual versus collective action and the other axis as activities 'outside' or 'inside' the system. The four quadrants are labeled as advocacy, activism, reform and broker, and engagement is further refined by whether the participation is 'pushed' by the group or 'pulled' by the system...
January 17, 2017: Patient
https://www.readbyqxmd.com/read/27798814/a-latent-class-analysis-to-identify-variation-in-caregivers-preferences-for-their-child-s-attention-deficit-hyperactivity-disorder-treatment-do-stated-preferences-match-current-treatment
#15
Xinyi Ng, John F P Bridges, Melissa M Ross, Emily Frosch, Gloria Reeves, Charles E Cunningham, Susan dosReis
OBJECTIVES: To investigate variation in caregiver preferences for their child's attention-deficit/hyperactivity disorder (ADHD) care and to determine if their stated preferences align with current care management. METHODS: Caregivers of a child aged 4-14 years and in care for ADHD were recruited from pediatric outpatient clinics and advocacy groups across the state of Maryland. Participants completed a survey collecting demographics, the child's treatment, and caregiver preferences-elicited using a best-worst scaling experiment (case 2)...
April 2017: Patient
https://www.readbyqxmd.com/read/27744499/the-patient-experience-with-soft-tissue-sarcoma-a-systematic-review-of-the-literature
#16
REVIEW
Randall Winnette, Lisa M Hess, Steven J Nicol, Datchen Fritz Tai, Catherine Copley-Merriman
BACKGROUND: Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being. OBJECTIVE: The aim of this review was to better understand current knowledge related to patient experience and quality of life (QOL) following diagnosis of STS. METHODS: A systematic review of English-language articles published from 2005 to 2015 was conducted in the PubMed/MEDLINE, Embase, PsychINFO, and Evidence-Based Medicine databases...
April 2017: Patient
https://www.readbyqxmd.com/read/27738817/big-data-will-it-improve-patient-centered-care
#17
Denzil G Fiebig
Within a generation, empirical researchers have experienced unprecedented increases in the availability of data. 'Big data' has arrived with considerable hype and a sense that these are dramatic shifts in the research environment that have wide-reaching implications across many disciplines. There is no doubt that the analysis of new and varied sources of data currently available to researchers in health have the potential to better measure, monitor and describe health outcomes of patients and to uncover interesting patterns in how patients respond to treatments and interact with the health system...
April 2017: Patient
https://www.readbyqxmd.com/read/27718132/the-therapy-attitudes-and-process-questionnaire-a-brief-measure-of-factors-related-to-psychotherapy-appointment-attendance
#18
Bonnie A Clough, Sonia M Nazareth, Leanne M Casey
BACKGROUND: Patient non-attendance and dropout remains problematic in mental health settings. The theory of planned behavior (TPB) has proven useful in understanding such challenges in a variety of healthcare settings, but the absence of an adequate measure in mental health has hampered research in this area. OBJECTIVE: The aim of the current study was to develop and conduct an initial psychometric investigation of a brief measure, the Therapy Attitudes and Process Questionnaire (TAP), utilizing the TPB to understand factors associated with attendance in mental health settings...
April 2017: Patient
https://www.readbyqxmd.com/read/27704486/successful-stepwise-development-of-patient-research-partnership-14-years-experience-of-actions-and-consequences-in-outcome-measures-in-rheumatology-omeract
#19
Maarten de Wit, John R Kirwan, Peter Tugwell, Dorcas Beaton, Maarten Boers, Peter Brooks, Sarah Collins, Philip G Conaghan, Maria-Antonietta D'Agostino, Cathie Hofstetter, Rod Hughes, Amye Leong, Ann Lyddiatt, Lyn March, James May, Pamela Montie, Pamela Richards, Lee S Simon, Jasvinder A Singh, Vibeke Strand, Marieke Voshaar, Clifton O Bingham, Laure Gossec
There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities...
April 2017: Patient
https://www.readbyqxmd.com/read/27637488/a-review-of-hiv-specific-patient-reported-outcome-measures
#20
REVIEW
Kim Engler, David Lessard, Bertrand Lebouché
The use of patient-reported outcome (PRO) measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patient-centered care. In human immunodeficiency virus (HIV), while PROs are used in research, their application in clinical practice has been limited despite their potential utility. PRO selection is an important consideration when contemplating their use. As past reviews of PROs in HIV have focused on particular areas (e...
April 2017: Patient
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