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Ivana Nakarada-Kordic, Niamh Patterson, Jill Wrapson, Stephen D Reay
BACKGROUND: A tracheostomy is a surgically created opening through the anterior neck tissues and the trachea, into which a tube is inserted. Despite its influence on basic human needs such as respiration, communication and nutrition, little is known about the impact of tracheostomy on patients and their caregivers or what could be done to enable better care and quality of life (QoL) for these individuals. OBJECTIVE: The aim of this review was to better understand the current knowledge related to the experience and QoL of adults living with a tracheostomy and their caregivers so as to be able to improve these experiences...
September 15, 2017: Patient
Danielle L Mosby, Matthew J Manierre, Steve S Martin, Paul Kolm, A Sami Abuzaid, Claudine T Jurkovitz, Daniel J Elliott, William S Weintraub
OBJECTIVE: Bridging the Divides (Bridges), a Centers for Medicare and Medicaid Services-funded program, developed a post-hospitalization care management infrastructure integrating information technology-enabled informatics with patient care for ischemic heart disease patients. The objective of this study was to assess patient satisfaction with the Bridges program and determine the patient characteristics associated with higher satisfaction. METHODS: All adult English-speaking patients who underwent a percutaneous coronary intervention, coronary artery bypass grafting, or catheterization plus acute myocardial infarction and agreed to participate in the Bridges program were eligible...
September 5, 2017: Patient
Dagmar Amtmann, Kendra Liljenquist, Alyssa Bamer, Fraser Bocell, Mark Jensen, Rosanne Wilson, Dennis Turk
PURPOSE: Pain-related self-efficacy and pain catastrophizing are important psychosocial determinants of pain and can be therapeutic targets for chronic pain management. Advances in psychometric science have made shorter or dynamically administered instruments possible. The aim of this study was to generate and test candidate items for two new patient-reported outcome measures of pain-related self-efficacy and pain catastrophizing. METHODS: An expert panel of pain clinicians and researchers was convened to establish construct definitions of pain-related self-efficacy and pain catastrophizing and guide item development...
September 4, 2017: Patient
Martin J Carney, Kate E Golden, Jason M Weissler, Michael A Lanni, Andrew R Bauder, Brigid Cakouros, Fabiola Enriquez, Robyn Broach, Frances K Barg, Marilyn M Schapira, John P Fischer
BACKGROUND: Current hernia patient-reported outcome (PRO) measures were developed without patient input, greatly impairing their content validity. OBJECTIVE: The purpose of this study was to develop a conceptual model for PRO measures for ventral hernia (VH) patients. METHODS: Fifteen semi-structured, concept elicitation interviews and two focus groups employing nominal group technique were conducted with VH patients. Patients were recruited between November 2015 and July 2016 over the telephone from a five-surgeon patient cohort at our institution...
August 30, 2017: Patient
Bennett Levitan, A Brett Hauber, Marina G Damiano, Ross Jaffe, Stephanie Christopher
No abstract text is available yet for this article.
August 22, 2017: Patient
Catherine H Saunders, Glyn Elwyn, Kathryn Kirkland, Marie-Anne Durand
BACKGROUND: Seriously ill people at high risk of death face difficult decisions, especially concerning the extent of medical intervention. Given the inherent difficulty and complexity of these decisions, the care they receive often does not align with their preferences. Patient decision aids that educate individuals about options and help them construct preferences about life-sustaining care may reduce the mismatch between the care people say they want and the care they receive. The quantity and quality of patient decision aids for those at high risk of death, however, are unknown...
August 20, 2017: Patient
Kristen L McCausland, Michelle K White, Spencer D Guthrie, Tiffany Quock, Muriel Finkel, Isabelle Lousada, Martha S Bayliss
BACKGROUND: Light chain (AL) amyloidosis is a rare, complex disease associated with significant morbidity and mortality. Delays in diagnosis are common and may have detrimental consequences on patients' prognosis. Too little is known regarding the patient journey to diagnosis. OBJECTIVE: The objective of this study was to describe the patient-reported journey to a correct diagnosis for AL amyloidosis. METHODS: Using a mixed-methods approach, data were collected from clinician (n = 4) and patient (n = 10) interviews and a survey of community-based patients with AL amyloidosis (n = 341)...
August 14, 2017: Patient
Julia M Kim, Catalina Suarez-Cuervo, Zackary Berger, Joy Lee, Jessica Gayleard, Carol Rosenberg, Natalia Nagy, Kristina Weeks, Sydney Dy
BACKGROUND: Patient and family engagement (PFE) is critical for patient safety. We systematically reviewed types of PFE strategies implemented and their impact on medication safety. METHODS: We searched MEDLINE, EMBASE, reference lists and websites to August 2016. Two investigators independently reviewed all abstracts and articles, and articles were additionally reviewed by two senior investigators for selection. One investigator abstracted data and two investigators reviewed the data for accuracy...
August 9, 2017: Patient
Jennifer L Purks, Erin E Wilhelm, Ira Shoulson, John Creveling, E Ray Dorsey, Telba Irony, Tara M LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot, Karen E Anderson
No abstract text is available yet for this article.
August 1, 2017: Patient
Daphnee S Pushparajah
Patients are increasingly recognised as the true customers of healthcare. By providing insights and perspectives, patients can help the wider healthcare community better understand their needs and ultimately enhance the value of healthcare solutions being developed. In the development of new medicines, for example, meaningful patient engagement can enable the pharmaceutical industry, healthcare providers and other stakeholders to achieve more meaningful health outcomes. While both the pharmaceutical industry and regulators have achieved some progress in incorporating patient perspectives into their activities, the lack of standardised best practices and metrics has made it challenging to achieve consistency and measure success in patient engagement...
July 24, 2017: Patient
Yi-Jing Huang, Cheng-Te Chen, Gong-Hong Lin, Tzu-Yi Wu, Sheng-Shiung Chen, Li-Fong Lin, Wen-Hsuan Hou, Ching-Lin Hsieh
BACKGROUND: The effective self-management and treatment of long-term disability after stroke depends greatly on the health literacy of patients. The European Health Literacy Survey Questionnaire (HLS-EU-Q) is a comprehensive and theory-based measure that captures multiple self-perceived competencies of health literacy and covers a diverse range of health contexts. However, there is no psychometric evidence on the HLS-EU-Q in the stroke population. OBJECTIVE: The aim of this study was to examine the validity of the HLS-EU-Q in patients with stroke using Rasch analysis...
July 14, 2017: Patient
Binita M Kamath, Linda Abetz-Webb, Ciara Kennedy, Bonnie Hepburn, Martha Gauthier, Nathan Johnson, Sharon Medendorp, Alejandro Dorenbaum, Lora Todorova, Benjamin L Shneider
OBJECTIVES: The aim was to develop a clinical outcome assessment (COA) for itching in children with cholestatic pruritus. METHODS: This prospective study aimed to enroll patients aged 4-30 years with Alagille syndrome (ALGS) or progressive familial intrahepatic cholestasis type 1 and caregivers of patients aged 5 months to 14 years. Eligible patients experienced itching during ≥3 of the 7 days before enrollment and had not undergone liver transplant or surgical interruption of the enterohepatic circulation...
July 14, 2017: Patient
Jennifer L Purks, Erin E Wilhelm, Ira Shoulson, John Creveling, E Ray Dorsey, Telba Irony, Tara M LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot, Karen E Anderson
No abstract text is available yet for this article.
July 7, 2017: Patient
Karin Dam Petersen, Gang Chen, Christine Mpundu-Kaambwa, Katherine Stevens, John Brazier, Julie Ratcliffe
OBJECTIVE: The aim was to conduct an empirical assessment of the measurement properties of the preference-based Child Health Utility 9D (CHU9D) versus the non-preference-based Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (referred to as 'PedsQL') in an Australian community-based sample of adolescents. METHODS: An online survey including the CHU9D, the PedsQL, a self-reported general health question, and socio-demographic questions was administered to adolescents (aged 15-17 years)...
July 5, 2017: Patient
Divine Ikenwilo, Sebastian Heidenreich, Mandy Ryan, Colette Mankowski, Jameel Nazir, Verity Watson
BACKGROUND: Discrete choice experiments (DCEs) are widely used to quantify individuals' preferences for healthcare. Guidelines recommend the design of DCEs should be informed by qualitative research. However, only a few studies go beyond guidelines by fully presenting qualitative and quantitative research jointly together in a mixed methods approach (MMA). OBJECTIVES: Using an example study about men's preferences for medical treatment of lower urinary tract symptoms (LUTS), we demonstrate how qualitative research can complement DCEs to gain a rich understanding of individuals' preferences...
June 28, 2017: Patient
Mike Herdman, Jameel Nazir, Zalmai Hakimi, Emad Siddiqui, Moses Huang, Marco Pavesi, Scott MacDiarmid, Marcus J Drake, Nancy Devlin
OBJECTIVES: The aim of this study was to compare outcomes using two preference-based measures of health status (EQ-5D-5L and OAB-5D) in patients with overactive bladder (OAB) treated with solifenacin plus mirabegron or solifenacin monotherapy in the BESIDE trial. METHODS: Patients with OAB who remained incontinent after 4 weeks' treatment with solifenacin 5 mg were randomized 1:1:1 to combination treatment (solifenacin 5 mg plus mirabegron [25 mg for the first 4 weeks/50 mg for the last 8 weeks]), solifenacin 5 mg, or solifenacin 10 mg...
June 23, 2017: Patient
Ellen M Janssen, John F P Bridges
No abstract text is available yet for this article.
August 2017: Patient
Jennifer Anne Whitty, Liana Fraenkel, Christopher S Saigal, Catharina G M Groothuis-Oudshoorn, Dean A Regier, Deborah A Marshall
No abstract text is available yet for this article.
August 2017: Patient
Benjamin M Craig, Emily Lancsar, Axel C Mühlbacher, Derek S Brown, Jan Ostermann
No abstract text is available yet for this article.
August 2017: Patient
Elly A Stolk, Benjamin M Craig, Brendan Mulhern, Derek S Brown
No abstract text is available yet for this article.
August 2017: Patient
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