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Catharina G M Groothuis-Oudshoorn, Terry N Flynn, Hong Il Yoo, Jay Magidson, Mark Oppe
No abstract text is available yet for this article.
April 25, 2018: Patient
Howard L Kaufman, Carla Dias Barbosa, Isabelle Guillemin, Jérémy Lambert, Lisa Mahnke, Murtuza Bharmal
BACKGROUND: Merkel cell carcinoma (MCC) is a rare and aggressive skin cancer with limited treatment options at advanced stages. There is a paucity of data available regarding the impact of MCC and its management on patients' lives. This study aimed to address this gap by interviewing patients with metastatic MCC entering a trial of an immunotherapy (avelumab). METHODS: In a single-arm, open-label, international, phase 2 trial in patients with stage IV, chemotherapy-refractory, histologically confirmed MCC, patients were invited to participate in semi-structured phone interviews...
March 6, 2018: Patient
Zohreh Talebizadeh, Ayten Shah
BACKGROUND: Concerns over the need to improve translational aspects of genetics research studies and engaging community members in the research process have been noted in the literature and raised by patient advocates. In addition to the work done by patient advocacy groups, organizations such as the Patient-Centered Outcomes Research Institute advocate for a change in the culture of research from being researcher-driven to becoming more patient-driven. OBJECTIVE: Our project, Autism Genetics and Outcomes (AutGO), consists of two phases...
March 5, 2018: Patient
Janet M Y Cheung, Delwyn J Bartlett, Carol L Armour, Bandana Saini, Tracey-Lea Laba
BACKGROUND: Despite the rapid development of effective treatments, both pharmacological and non-pharmacological, insomnia management remains suboptimal at the practice interface. Patient preferences play a critical role in influencing treatment outcomes. However, there is currently a mismatch between patient preferences and clinician recommendations, partly perpetuated by a limited understanding of the patients' decision-making process. OBJECTIVES: The aim of our study was to empirically quantify patient preferences for treatment attributes common to both pharmacological and non-pharmacological insomnia treatments...
March 3, 2018: Patient
David John Mott
No abstract text is available yet for this article.
March 2, 2018: Patient
Stuart J Wright, Caroline M Vass, Gene Sim, Michael Burton, Denzil G Fiebig, Katherine Payne
BACKGROUND: Scale heterogeneity, or differences in the error variance of choices, may account for a significant amount of the observed variation in the results of discrete choice experiments (DCEs) when comparing preferences between different groups of respondents. OBJECTIVE: The aim of this study was to identify if, and how, scale heterogeneity has been addressed in healthcare DCEs that compare the preferences of different groups. METHODS: A systematic review identified all healthcare DCEs published between 1990 and February 2016...
February 28, 2018: Patient
Mandy Gutknecht, Marion Danner, Marthe-Lisa Schaarschmidt, Christian Gross, Matthias Augustin
BACKGROUND: To define treatment benefit, the Patient Benefit Index contains a weighting of patient-relevant treatment goals using the Patient Needs Questionnaire, which includes a 5-point Likert scale ranging from 0 ("not important at all") to 4 ("very important"). These treatment goals have been assigned to five health dimensions. The importance of each dimension can be derived by averaging the importance ratings on the Likert scales of associated treatment goals...
February 15, 2018: Patient
Raphael J Dehoratius, Lawrence H Brent, Jeffrey R Curtis, Lorie A Ellis, Kezhen L Tang
BACKGROUND: Patient perceptions of treatment success, including satisfaction/preference, may complement clinical efficacy assessments. OBJECTIVE: Our objective was to evaluate satisfaction with subcutaneous golimumab and its auto-injector in patients with rheumatoid arthritis (RA) and an inadequate adalimumab/etanercept response. METHODS: In the multicenter, assessor-blinded GO-SAVE study, 433 patients with active RA (28-joint Disease Activity Score incorporating erythrocyte sedimentation rate [DAS28-ESR] ≥ 3...
February 9, 2018: Patient
James D Harrison, Wendy G Anderson, Maureen Fagan, Edmondo Robinson, Jeffrey Schnipper, Gina Symczak, Catherine Hanson, Martha B Carnie, Jim Banta, Sherry Chen, Jonathan Duong, Celene Wong, Andrew D Auerbach
OBJECTIVE: The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context. METHODS: We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate...
February 1, 2018: Patient
Leah Rand, Zackary Berger
We discuss the role of prior authorization (PA) in supporting patient-centered care (PCC) by directing health system resources and thus the ability to better meet the needs of individual patients. We begin with an account of PCC as a standard that should be aimed for in patient care. In order to achieve widespread PCC, appropriate resource management is essential in a healthcare system. This brings us to PA, and we present an idealized view of PA in order to argue how at its best, it can contribute to the provision of PCC...
January 31, 2018: Patient
Allison Barz Leahy, Chris Feudtner, Ethan Basch
Symptom monitoring using patient-reported outcomes (PROs) is not common in pediatric oncology, despite interest from stakeholders-including patients, families, clinicians, and regulatory organizations-and proven clinical benefit in adult oncology. This article examines the foundational data for patient-reported symptom reporting in this population and posits the next investigative steps toward the implementation of patient-reported symptom monitoring in the care and research of pediatric oncology patients. The reasoning behind, and feasibility of, monitoring symptoms in pediatric oncology patients using PRO measures are discussed, as well as specific tools that have been developed to track symptoms in this population, including innovative electronic self-reporting platforms built to engage children in the symptom reporting process...
April 2018: 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...
April 2018: Patient
Yi-Long Wu, Vera Hirsh, Lecia V Sequist, Cheng-Ping Hu, Jifeng Feng, Shun Lu, Yunchao Huang, Martin Schuler, Tony Mok, Nobuyuki Yamamoto, Kenneth O'Byrne, Sarayut L Geater, Caicun Zhou, Dan Massey, Angela Märten, Juliane Lungershausen, James Chih-Hsin Yang
INTRODUCTION: In LUX-Lung 3 and LUX-Lung 6, afatinib significantly improved progression-free survival (PFS) versus chemotherapy in patients with tumors harboring common epidermal growth factor receptor (EGFR) mutations (Del19/L858R) and significantly improved overall survival (OS) in patients with tumors harboring Del19 mutations. Patient-reported outcomes stratified by EGFR mutation type are reported. PATIENTS AND METHODS: Lung cancer symptoms and health-related quality of life (QoL) were assessed every 21 days until progression using the EORTC Quality of Life Core Questionnaire C30 and its lung cancer-specific module, LC13...
February 2018: Patient
Ebony Dashiell-Aje, Gale Harding, Katie Pascoe, Jane DeVries, Pamela Berry, Sulabha Ramachandran
OBJECTIVE: This study assessed patient experiences of using an autoinjector device to self-administer subcutaneous belimumab for the treatment of systemic lupus erythematosus (SLE). Satisfaction, ease and convenience of use, and confidence with the device were assessed, in addition to overall experience with belimumab. METHODS: This cross-sectional study was conducted among patients who completed a phase IIb open-label, multi-dose usability, tolerability, and safety study of subcutaneous belimumab (NCT02124798), in which patients receiving intravenous belimumab or subcutaneous belimumab using a prefilled syringe were switched to eight weekly self-administered doses of subcutaneous belimumab using the autoinjector...
February 2018: 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...
February 2018: 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...
February 2018: 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...
February 2018: 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...
February 2018: 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...
February 2018: 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)...
February 2018: Patient
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