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https://www.readbyqxmd.com/read/28229377/important-treatment-outcomes-for-patients-with-psoriatic-arthritis-a-multisite-qualitative-study
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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/28005235/examination-of-the-applicability-of-the-disabilities-of-the-arm-shoulder-and-hand-dash-questionnaire-to-patients-with-hand-injuries-and-diseases-using-rasch-analysis
#8
Kathrin Braitmayer, Caroline Dereskewitz, Cornelia Oberhauser, Klaus-Dieter Rudolf, Michaela Coenen
BACKGROUND: The Disabilities of the Arm, Shoulder and Hand (DASH) Questionnaire is the most commonly applied patient-reported outcome measure used to assess disability and functioning in clinical research and practice for patients with injuries and diseases of the upper extremities. The objective of this study was to assess whether the DASH is a valid and reliable questionnaire to measure disability and functioning in patients with hand injuries and diseases using Rasch analysis. METHODS: We performed a psychometric study using data derived from two multicentre studies carried out to develop the International Classification of Functioning, Disability and Health (ICF) Core Sets for Hand Conditions...
December 22, 2016: Patient
https://www.readbyqxmd.com/read/28004275/perceived-benefits-and-factors-that-influence-the-ability-to-establish-and-maintain-patient-support-groups-in-rare-diseases-a-scoping-review
#9
REVIEW
Vanessa C Delisle, Stephanie T Gumuchian, Danielle B Rice, Alexander W Levis, Lorie A Kloda, Annett Körner, Brett D Thombs
BACKGROUND: Support groups are an important resource for many people living with rare diseases. The perceived benefits of participating in support groups for people with rare diseases and factors that may influence the ability to successfully establish and maintain these groups are not well understood. Thus, the objective of this scoping review was to provide a mapping of the available evidence on the (1) benefits or perceived benefits of participating in rare disease support groups and (2) barriers and facilitators of establishing and maintaining these groups...
December 21, 2016: Patient
https://www.readbyqxmd.com/read/27981439/development-and-content-validity-of-the-statin-experience-assessment-questionnaire-seaq-%C3%A2
#10
Terry A Jacobson, Steven V Edelman, Nina Galipeau, Alan L Shields, Usha G Mallya, Andrew Koren, Michael H Davidson
INTRODUCTION: The National Lipid Association Statin Intolerance (SI) Panel recognized the need for better understanding of the patient SI experience. OBJECTIVE: The objective of this research was to develop a patient-reported outcome (PRO) questionnaire to assess a patient's experience with SI. METHODS: Questionnaire development was informed via a series of research activities: literature review, concept elicitation, item generation, and content evaluation...
December 15, 2016: Patient
https://www.readbyqxmd.com/read/27905072/communicating-uncertainty-in-benefits-and-harms-a-review-of-patient-decision-support-interventions
#11
Nick Bansback, Madelaine Bell, Luke Spooner, Alysa Pompeo, Paul K J Han, Mark Harrison
BACKGROUND: Interventions designed to help people deliberate and participate in their healthcare choices frequently describe uncertainty in potential benefits and harms. This uncertainty can be generalized to aleatory, or first-order uncertainty, represented by risk estimates, and epistemic, or second-order uncertainty, represented by imprecision in the risk estimates. OBJECTIVES: The aim of this short communication was to review how patient decision support interventions (PDSIs) describe aleatory and epistemic uncertainty...
November 30, 2016: Patient
https://www.readbyqxmd.com/read/27599978/readability-and-comprehension-of-the-geriatric-depression-scale-and-promis-%C3%A2-physical-function-items-in-older-african-americans-and-latinos
#12
Sylvia H Paz, Loretta Jones, José L Calderón, Ron D Hays
BACKGROUND: Depression and physical function are particularly important health domains for the elderly. The Geriatric Depression Scale (GDS) and the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) physical function item bank are two surveys commonly used to measure these domains. It is unclear if these two instruments adequately measure these aspects of health in minority elderly. OBJECTIVE: The aim of this study was to estimate the readability of the GDS and PROMIS(®) physical function items and to assess their comprehensibility using a sample of African American and Latino elderly...
February 2017: Patient
https://www.readbyqxmd.com/read/27461276/patient-preferences-for-oral-anticoagulation-therapy-in-atrial-fibrillation-a-systematic-literature-review
#13
REVIEW
Thomas Wilke, Sabine Bauer, Sabrina Mueller, Thomas Kohlmann, Rupert Bauersachs
OBJECTIVES: Since the introduction of non-vitamin K antagonist (VKA) oral anticoagulants (NOACs), an additional treatment option, apart from VKAs, has become available for stroke prevention in patients with atrial fibrillation (AF). For various reasons, it is important to consider patients' preferences regarding type of medication, particularly in view of the established relationship between preferences towards treatment, associated burden of treatment, and treatment adherence. This review aimed to systematically analyse the scientific literature assessing the preferences of AF patients with regard to long-term oral anticoagulant (OAC) treatment...
February 2017: Patient
https://www.readbyqxmd.com/read/27384670/what-outcomes-are-important-for-gout-patients-in-depth-qualitative-research-into-the-gout-patient-experience-to-determine-optimal-endpoints-for-evaluating-therapeutic-interventions
#14
Sophi Tatlock, Katja Rüdell, Charlotte Panter, Rob Arbuckle, Leslie R Harrold, William J Taylor, Tara Symonds
BACKGROUND AND OBJECTIVES: Characterized by sudden onset of severe joint pain, swelling, redness, and tenderness to touch, gout 'flare ups' have a substantial impact on quality of life (QoL). This research employed a patient-centered approach to explore the symptoms and impacts of gout, and assess the content validity of existing patient-reported outcomes (PROs). METHODS: Qualitative interviews were conducted with 30 US gout patients (non-tophaceous: n = 20, tophaceous: n = 10) and five expert rheumatologists...
February 2017: Patient
https://www.readbyqxmd.com/read/27384669/content-validity-for-the-vvsymq-%C3%A2-instrument-a-new-patient-reported-outcome-measure-for-the-assessment-of-varicose-veins-symptoms
#15
Jean Paty, Celeste A Elash, Diane M Turner-Bowker
BACKGROUND: Varicose veins are common and can impact patients' quality of life, but consensus regarding the evaluation of varicose vein symptoms is lacking and existing measures have limitations. OBJECTIVE: This research aimed to develop and establish the content validity of a new electronic patient-reported outcome (PRO) measure, the VVSymQ(®) instrument, to assess symptoms of superficial venous insufficiency (varicose veins) in clinical trials. METHODS: The development of the VVSymQ(®) instrument began with qualitative interviews with patients based on the symptom domain of the VEINES-QOL/Sym, an existing PRO instrument for chronic venous disorders of the leg...
February 2017: Patient
https://www.readbyqxmd.com/read/27167076/translating-evidence-to-facilitate-shared-decision-making-development-and-usability-of-a-consult-decision-aid-prototype
#16
Dawn Stacey, France Légaré, Anne Lyddiatt, Anik M C Giguere, Manosila Yoganathan, Anton Saarimaki, Jordi Pardo Pardo, Tamara Rader, Peter Tugwell
AIM: The purpose of this study was to translate evidence from Cochrane Reviews into a format that can be used to facilitate shared decision making during the consultation, namely patient decision aids. METHODS: A systematic development process (a) established a stakeholder committee; (b) developed a prototype according to the International Patient Decision Aid Standards; (c) applied the prototype to a Cochrane Review and used an interview-guided survey to evaluate acceptability/usability; (d) created 12 consult decision aids; and (e) used a Delphi process to reach consensus on considerations for creating a consult decision aid...
December 2016: Patient
https://www.readbyqxmd.com/read/27167075/patients-preferences-for-genomic-diagnostic-testing-in-chronic-lymphocytic-leukaemia-a-discrete-choice-experiment
#17
James Buchanan, Sarah Wordsworth, Anna Schuh
BACKGROUND: Genomic information could help to reduce the morbidity effects of inappropriate treatment decisions in many disease areas, in particular cancer. However, evidence of the benefits that patients derive from genomic testing is limited. This study evaluated patient preferences for genomic testing in the context of chronic lymphocytic leukaemia (CLL). METHODS: We used a discrete choice experiment (DCE) survey to assess the preferences of CLL patients in the UK for genomic testing...
December 2016: Patient
https://www.readbyqxmd.com/read/27155887/factors-in-patient-empowerment-a-survey-of-an-online-patient-research-network
#18
Emil Chiauzzi, Pronabesh DasMahapatra, Elisenda Cochin, Mikele Bunce, Raya Khoury, Purav Dave
BACKGROUND: Providers and healthcare organizations have begun recognizing the importance of patient empowerment as a driver of patient-centered care. Unfortunately, most studies have investigated empowerment with single diseases. Identifying factors of empowerment across conditions and populations would enable a greater understanding of this construct. OBJECTIVE: The purpose of this study was to understand empowerment in relation to health information-seeking, interactions with providers and peers, and healthcare access in chronic disease patients...
December 2016: Patient
https://www.readbyqxmd.com/read/27882509/what-s-important-to-the-patient-informational-needs-of-patients-making-decisions-about-hepatitis-c-treatment
#19
Donna M Evon, Carol E Golin, Teodora Stoica, Rachel E Jones, Sarah J Willis, Joseph Galanko, Michael W Fried
BACKGROUND AND OBJECTIVES: Multiple treatment options with direct-acting antivirals are now available for hepatitis C virus (HCV). Study aims were to understand (1) the informational topics patients want to have to make informed treatment decisions; (2) the importance patients place on each topic; and (3) the topics patients prioritize as most important. METHODS: We used a mixed-methods study of two samples recruited from an academic liver center. Participants were not currently on treatment...
November 23, 2016: Patient
https://www.readbyqxmd.com/read/27866323/measuring-compassion-in-healthcare-a-comprehensive-and-critical-review
#20
REVIEW
Shane Sinclair, Lara B Russell, Thomas F Hack, Jane Kondejewski, Richard Sawatzky
BACKGROUND: There is international concern about the lack of compassion in healthcare systems. A valid and reliable tool for measuring compassion in healthcare systems and educational institutions is required. This comprehensive and critical narrative synthesis identified and compared existing measures of compassionate care in clinical settings. METHODS: PubMed, MEDLINE, CINAHL and PsycINFO databases and grey literature were searched to identify studies that report information on instruments that measure compassion or compassionate care in clinicians, nurses, healthcare students and patients...
November 19, 2016: Patient
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