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Ahmad Shahabeddin Parizi, Paul F M Krabbe, Erik Buskens, Stephan J L Bakker, Karin M Vermeulen
The overall aim of this scoping review of the literature is twofold: (1) to provide an overview of all instruments that have been used to assess health-related quality of life (HRQoL) after solid organ transplantation and (2) to provide a list of health items they include to support future studies on the development of a new-generation HRQoL instrument. All studies that administered any form of HRQoL instrument to post-transplant solid organ recipients were identified in a comprehensive search of PubMed (MEDLINE), Embase, and Web of Science, with a cut-off date of May 2018...
October 16, 2018: Patient
Jan R Oyebode, Simon Pini, Emma Ingleson, Molly Megson, Mike Horton, Linda Clare, Hareth Al-Janabi, Carol Brayne, Penny Wright
BACKGROUND AND OBJECTIVES: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. METHODS: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review...
October 12, 2018: Patient
Annie Madden, Max Hopwood, Joanne Neale, Carla Treloar
BACKGROUND: Growing international interest in mechanisms to capture and measure experiences and outcomes of health interventions from the patient perspective has led to the development of patient-reported measures (PRMs) across many areas of medicine. Although PRMs are now well utilised in some settings, the rapidly expanding area of direct-acting antiviral (DAA) treatments for hepatitis C has received remarkably little attention. In addition, questions are also being raised about the extent to which patients have been involved in the development of PRMs, which are primarily designed to reflect the patient perspective...
October 1, 2018: Patient
Neal W Dickert, JoAnne Brabson, Rodney J Hunter, Michele Riedford
No abstract text is available yet for this article.
October 1, 2018: Patient
John F P Bridges, Jui-Hua Tsai, Ellen Janssen, Norah L Crossnohere, Ryan Fischer, Holly Peay
BACKGROUND: Best-worst scaling methods have been used in several Duchenne and Becker muscular dystrophy (DBMD) studies to quantify patient and caregiver priorities and preferences and promote patient-focused drug development (PFDD). We sought to assess the extent to which different members of the DBMD community would accept a discrete-choice experiment (DCE) that incorporates uncertainty regarding individual-level benefit. METHODS: A community advisory board encouraged the development and testing of a DCE to further examine treatment preferences in DBMD and to facilitate the inclusion of a policy-relevant uncertainty attribute...
September 27, 2018: Patient
Mehdi Najafzadeh, Sebastian Schneeweiss, Niteesh K Choudhry, Jerry Avorn, Joshua J Gagne
OBJECTIVES: Preference weights derived from general population samples are often used for therapeutic decision making. In contrast, patients with cardiovascular disease may have different preferences concerning the benefits and risks of anticoagulant therapy. Using a discrete choice experiment, we compared preferences for anticoagulant treatment outcomes between the general population and patients with cardiovascular disease. METHODS: A sample of the general US population and a sample of patients with cardiovascular disease were selected from online panels...
September 21, 2018: Patient
Nuriye Kupeli, Bridget Candy, Gabrielle Tamura-Rose, Guy Schofield, Natalie Webber, Stephanie E Hicks, Theodore Floyd, Bella Vivat, Elizabeth L Sampson, Patrick Stone, Trefor Aspden
INTRODUCTION: Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited. OBJECTIVE: This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death...
August 24, 2018: Patient
Suzanne McMullen, Lisa M Hess, Edward S Kim, Benjamin Levy, Mohamed Mohamed, David Waterhouse, Antoinette Wozniak, Sarah Goring, Kerstin Müller, Catherine Muehlenbein, Himani Aggarwal, Yajun Zhu, Ana B Oton, Jennifer L Ersek, Katherine B Winfree
INTRODUCTION: Advanced non-small cell lung cancer (NSCLC) is a severe disease with burdensome symptoms and traditionally poor outcomes. The treatment of advance disease is based on chemotherapy, with the recent addition of immunotherapy. Patients who respond to initial treatment can opt to receive maintenance therapy (MT). It is important to understand why patients with advanced NSCLC choose to accept or refuse therapy, and how physician recommendations play into this decision-making process...
August 21, 2018: Patient
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
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)...
October 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...
October 2018: Patient
Juan Marcos Gonzalez, F Reed Johnson, Bennett Levitan, Rebecca Noel, Holly Peay
No abstract text is available yet for this article.
October 2018: Patient
Catharina G M Groothuis-Oudshoorn, Terry N Flynn, Hong Il Yoo, Jay Magidson, Mark Oppe
No abstract text is available yet for this article.
October 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...
October 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...
October 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
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