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Caroline Vass, Dan Rigby, Katherine Payne
BACKGROUND: Risk is increasingly used as an attribute in discrete choice experiments (DCEs). However, risk and probabilities are complex concepts that can be open to misinterpretation, potentially undermining the robustness of DCEs as a valuation method. This study aimed to understand how respondents made benefit-risk trade-offs in a DCE and if these were affected by the communication of the risk attributes. METHODS: Female members of the public were recruited via local advertisements to participate in think-aloud interviews when completing a DCE eliciting their preferences for a hypothetical breast screening programme described by three attributes: probability of detecting a cancer; risk of unnecessary follow-up; and cost of screening...
August 11, 2018: Patient
Danny Campbell, Seda Erdem
Providing an opt-out alternative in discrete choice experiments can often be considered to be important for presenting real-life choice situations in different contexts, including health. However, insufficient attention has been given to how best to address choice behaviours relating to this opt-out alternative when modelling discrete choice experiments, particularly in health studies. The objective of this paper is to demonstrate how to account for different opt-out effects in choice models. We aim to contribute to a better understanding of how to model opt-out choices and show the consequences of addressing the effects in an incorrect fashion...
August 2, 2018: Patient
Karen M Facey, Nicola Bedlington, Sarah Berglas, Neil Bertelsen, Ann N V Single, Victoria Thomas
Health technology assessments (HTAs) are meant to inform health policy by taking account of all the potential impacts of using a health technology. In the 1990s, HTAs included rigorous research to produce patient-based evidence, and some supported participation of patient representatives to help focus HTA research and determine value. In the 2000s, HTAs became more closely linked to reimbursement decisions, focusing on clinical and cost effectiveness. Patient involvement should be tailored to the specific needs of each HTA...
July 27, 2018: Patient
Joseph C Grieco, Beverly Romero, Emuella Flood, Raquel Cabo, Jeannie Visootsak
BACKGROUND: Angelman syndrome (AS) is a rare, neurological genetic disorder for which no clinical outcomes assessments (COAs) or conceptual models (CM) have been developed. OBJECTIVE: This study aimed to identify symptoms and impacts relevant and important in this patient population and develop a conceptual model of AS, and to evaluate the content validity of selected COA instruments with potential for inclusion in clinical studies of AS to capture treatment benefit...
July 10, 2018: Patient
Stacey A McCaffrey, Emil Chiauzzi, Caroline Chan, Michael Hoole
BACKGROUND: There is an increasing focus on measuring performance indicators of health care providers, but there is a lack of patient input into what defines 'good care.' OBJECTIVE: The primary objective was to develop a conceptual model of 'good health care' from the patient's perspective. Exploratory analyses were also conducted to investigate (1) differences in patient priorities based on demographic and clinical factors, and (2) differences between patients and health stakeholders (e...
July 2, 2018: Patient
Sarah G Gensheimer, Albert W Wu, Claire F Snyder
The growing measurement of patient-reported outcomes (PROs) and adoption of electronic health records (EHRs) presents an unprecedented opportunity to improve health care for patients and populations. The integration of PROs into EHRs can promote patient-centered care and advance quality improvement initiatives, research, and population health. Despite these potential benefits, there are few best practices to help organizations achieve integration. To integrate PROs into EHRs, organizations should evaluate the advantages and disadvantages of various approaches within three themes: Planning, Selection, and Engagement...
July 2, 2018: Patient
David Wohl, Amanda Clarke, Franco Maggiolo, Will Garner, Marianne Laouri, Hal Martin, Erin Quirk
BACKGROUND: Integrase strand transfer inhibitors (INSTIs) are recommended for first-line antiretroviral therapy in combination with two nucleos(t)ide reverse transcriptase inhibitors. Co-formulated bictegravir, emtricitabine, and tenofovir alafenamide (B/F/TAF), a novel, INSTI-based regimen, is currently approved in the US and EU for the treatment of HIV-1 infection and recommended as first-line treatment in current guidelines. In our current analysis, we aimed to determine changes in patient-reported symptoms over time among HIV-1-infected adults who initiated or switched to B/F/TAF versus another INSTI-based regimen, co-formulated abacavir, dolutegravir, and lamivudine (ABC/DTG/3TC)...
June 29, 2018: Patient
Amy Simon, Farrah Pompilus, William Querbes, Alex Wei, Sara Strzok, Craig Penz, Desiree Lyon Howe, Jessica R Hungate, Jae B Kim, Sonalee Agarwal, Patrick Marquis
OBJECTIVE: Acute intermittent porphyria is a rare metabolic disorder that affects heme synthesis. Patients with acute intermittent porphyria may experience acute debilitating neurovisceral attacks that require frequent hospitalizations and negatively impact quality of life. Although clinical aspects of acute intermittent porphyria attacks have been documented, the experience of patients is not well known, particularly for those more severely affected patients who experience frequent attacks...
June 19, 2018: Patient
Tanja S Jørgensen, Marie Skougaard, Peter C Taylor, Hans C Asmussen, Anne Lee, Louise Klokker, Louise Svejstrup, Irina Mountian, Henrik Gudbergsen, Lars Erik Kristensen
BACKGROUND AND OBJECTIVE: Qualitative methods such as semi-structured interviews and focus-groups are used to evaluate the applicability and relevance of device technologies in clinical practice, but when used alone, often lack generalizability. This study aimed to assess the face validity and feasibility of using a composite, three-step qualitative method (the Parker Model), to inform the development and implementation of ava® , an electromechanical device (e-Device) for subcutaneous self-administration of the biologic, certolizumab pegol (CZP), used to treat rheumatic diseases...
June 11, 2018: Patient
Irit Chudner, Margalit Goldfracht, Hadass Goldblatt, Anat Drach-Zahavy, Khaled Karkabi
INTRODUCTION: Video consultations (VCs) provide increased accessibility of primary care to remote areas and overall improved care for chronic patients. They also contribute to higher patient satisfaction and improved resource management. Despite these benefits, VC integration into the health system is complex and slow. Understanding the VC-related preferences of three key stakeholders-patients, primary care physicians (PCPs) and policy makers (PMs)-is crucial for achieving optimal implementation...
June 9, 2018: Patient
Gang Chen, Miguel A Garcia-Gordillo, Daniel Collado-Mateo, Borja Del Pozo-Cruz, José C Adsuar, José Manuel Cordero-Ferrera, José María Abellán-Perpiñán, Fernando Ignacio Sánchez-Martínez
OBJECTIVES: The aim of this study was to compare the Parkinson's Disease Questionnaire-8 (PDQ-8) with three multi-attribute utility (MAU) instruments (EQ-5D-3L, EQ-5D-5L, and 15D) and to develop mapping algorithms that could be used to transform PDQ-8 scores into MAU scores. METHODS: A cross-sectional study was conducted. A final sample of 228 evaluable patients was included in the analyses. Sociodemographic and clinical data were also collected. Two EQ-5D questionnaires were scored using Spanish tariffs...
June 7, 2018: Patient
David A Katz, Kenda R Stewart, Monica Paez, Mark W Vander Weg, Kathleen M Grant, Christine Hamlin, Gary Gaeth
BACKGROUND: Providers often prescribe counseling and/or medications for tobacco cessation without considering patients' treatment preferences. OBJECTIVE: The primary aims of this study are to describe (1) the development of a discrete choice experiment (DCE) questionnaire designed to identify the attributes and levels of tobacco treatment that are most important to veterans; and (2) the decision-making process in choosing between hypothetical tobacco treatments...
June 1, 2018: Patient
Juan Marcos Gonzalez, F Reed Johnson, Bennett Levitan, Rebecca Noel, Holly Peay
No abstract text is available yet for this article.
May 30, 2018: Patient
Clare Villalba, Anjali Jaiprakash, Jared Donovan, Jonathan Roberts, Ross Crawford
BACKGROUND: A wealth of peer-reviewed data exists regarding people's health experience, yet practical ways of using the data to understand patients' experiences and to inform health co-design are needed. OBJECTIVE: This study aims to develop an applied and pragmatic method for using patient experience literature in co-design by transforming it into an accessible and creative co-design tool. METHOD: A scoping literature review of the CINAHL, MEDLINE, PsycINFO and PubMed electronic databases was conducted from January 2011 through August 2016...
May 26, 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...
August 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...
August 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...
August 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...
August 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...
August 2018: Patient
Paulo H R F Almeida, Thales B C Silva, Francisco de Assis Acurcio, Augusto A Guerra Júnior, Vania E Araújo, Leonardo M Diniz, Brian Godman, Alessandra M Almeida, Juliana Alvares
INTRODUCTION: Insulin analog glargine (GLA) has been available as one of the therapeutic options for patients with type 1 diabetes mellitus to enhance glycemic control. Studies have shown that a decrease in the frequency of hypoglycemic episodes improves the quality of life (QoL) of diabetic patients. However, there are appreciable acquisition cost differences between different insulins. Consequently, there is a need to assess their impact on QoL to provide future guidance to health authorities...
August 2018: Patient
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