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Stefan Holmstrom, Shevani Naidoo, James Turnbull, Emily Hawryluk, Jean Paty, Robert Morlock
BACKGROUND: There is little information available on health-related quality of life in patients with chemotherapy-naïve metastatic castration-resistant prostate cancer. This study aimed to develop a conceptual model that describes patients' experiences of living with this condition. METHODS: This was a cross-sectional, non-interventional qualitative research study. Sixty-minute semi-structured interviews were conducted with physicians experienced in treating metastatic castration-resistant prostate cancer and with chemotherapy-naïve patients with metastatic castration-resistant prostate cancer...
December 6, 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
No abstract text is available yet for this article.
December 3, 2018: Patient
José E Montoya-Medina, Giordana Poletti-Jabbour, Nicole Urrunaga, Heyson A Jiménez
No abstract text is available yet for this article.
December 3, 2018: Patient
Brownsyne Tucker Edmonds, Shelley M Hoffman, Dustin Lynch, Erin Jeffries, Kelli Jenkins, Sarah Wiehe, Nerissa Bauer, Miriam Kuppermann
BACKGROUND: Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference sensitive and value laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach. METHODS: We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers...
November 29, 2018: Patient
Jeong Seok Lee, Harris Ahmad, Seung-Cheol Shim, Sang-Cheol Bae, Yeong Wook Song, Eun Young Lee
BACKGROUND: Response prediction of certain biologic agents for the treatment of rheumatoid arthritis (RA) remains an unmet need in real-world clinical practice. The contribution of patient-reported components to the 28-joint Disease Activity Score (DAS28) was termed DAS28-P and investigated as a predictor of response to biologic agents, mostly tumor necrosis factor inhibitors. We aimed to evaluate DAS28-P as a predictor of the European League Against Rheumatism (EULAR) response to abatacept in patients with RA...
November 28, 2018: Patient
Richard Norman, Benjamin M Craig, Paul Hansen, Marcel F Jonker, John Rose, Deborah J Street, Brendan Mulhern
No abstract text is available yet for this article.
November 16, 2018: Patient
Karin Schölin Bywall, Jorien Veldwijk, Mats G Hansson, Ulrik Kihlbom
BACKGROUND: There is increasing interest in involving patient preferences for benefits and risks in regulatory decision making. Therefore, it is essential to identify patient perspectives regarding the value of patient preference information (PPI). OBJECTIVES: The aim of this study was to explore how patients with rheumatoid arthritis (RA) value the use of PPI in regulatory decision making regarding medical products. METHODS: Regulators and patients with RA were interviewed to gather initial insights into opinions on the use of PPI in regulatory decisions regarding medical products...
November 15, 2018: Patient
Domingo Orozco-Beltrán, Javier de Toro, María J Galindo, Ignacio Marín-Jiménez, Francesc Casellas, María J Fuster-RuizdeApodaca, María L García-Vivar, Antonio Hormigo-Pozo, Mercedes Guilabert, Nuria Sánchez-Vega, Gonzalo Fernández, Luis Cea-Calvo
BACKGROUND: Patient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes. OBJECTIVES: Our objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences. METHODS: A cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases...
November 15, 2018: Patient
Elisabeth M Oehrlein, T Rose Love, Chinenye Anyanwu, Maya L Hanna, Jacqueline Kraska, Eleanor M Perfetto
No abstract text is available yet for this article.
November 3, 2018: Patient
T Joseph Mattingly, Khang Nong
No abstract text is available yet for this article.
October 30, 2018: Patient
Merel L Kimman, Marlies S Wijsenbeek, Sander M J van Kuijk, Kioa L Wijnsma, Nicole C A J van de Kar, Marjolein Storm, Xana van Jaarsveld, Carmen D Dirksen
BACKGROUND: This study assessed the validity and reliability of the generic module of the recently developed Patient Experiences and Satisfaction with Medications (PESaM) questionnaire in a sample of patients in the Netherlands. METHODS: The generic module of the PESaM questionnaire consists of 18 items related to the domains effectiveness, side effects and ease of use of medications. It assesses patients' experiences regarding the impact of the medication on daily life, health and satisfaction...
October 26, 2018: Patient
Sophy Barber, Hilary Bekker, Joachim Marti, Sue Pavitt, Balvinder Khambay, David Meads
OBJECTIVE: Our objective was to develop and test a discrete-choice experiment (DCE) survey to elicit adolescent and parent preferences for dental care for hypodontia (a developmental condition where one or more teeth fail to develop). METHODS: This was a mixed-methods study. Participants were adolescents (aged 12-16 years) with hypodontia and their parents and the dentists providing hypodontia care. Stage one entailed attribute development, as follows. (1) Attribute identification: systematic review of hypodontia literature; interviews with adolescents with hypodontia (n = 8) and parents (n = 8); observation of hypodontia clinical consultations (n = 5); environmental scan of hypodontia patient information resources (n = 30); and systematic analysis of social media posts (n = 176)...
October 26, 2018: Patient
Traci M Kazmerski, Elizabeth Miller, Gregory S Sawicki, Phaedra Thomas, Olga Prushinskaya, Eliza Nelson, Kelsey Hill, Anna Miller, S Jean Emans
PURPOSE: Stakeholder engagement, specifically integration of patient and family perspectives about what matters, is increasingly recognized as a critical component of patient-centered healthcare delivery. This study describes a structured approach to and evaluation of stakeholder engagement in the development of novel sexual and reproductive health (SRH) educational resources for adolescent and young adult (AYA) women with cystic fibrosis (CF). METHODS: Key stakeholders participated in a systematic series of steps to iteratively develop and adapt patient educational resources...
October 26, 2018: Patient
Eve Namisango, Katherine Bristowe, Matthew J Allsop, Fliss E M Murtagh, Melanie Abas, Irene J Higginson, Julia Downing, Richard Harding
BACKGROUND: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. OBJECTIVE: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. METHOD: This is a systematic literature review across multiple databases for identification of eligible primary evidence...
October 26, 2018: Patient
Laura Ellen Ashcraft, Miya Asato, Amy J Houtrow, Dio Kavalieratos, Elizabeth Miller, Kristin N Ray
BACKGROUND: Parent empowerment is often an expressed goal in clinical pediatrics and in pediatric research, but the antecedents and consequences of parent empowerment are not well established. OBJECTIVE: The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings. ELIGIBILITY CRITERIA: The inclusion criteria were (1) studies with results about parent empowerment in the context of children's healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies...
October 17, 2018: Patient
Ahmed Aber, Aoife Howard, Helen Buckley Woods, Georgina Jones, Jonathan Michaels
OBJECTIVES: The aim of this study was to identify themes that determine health-related quality of life (HRQoL) in patients with carotid artery stenosis and identify the patient-reported outcome measures (PROMs) that best cover the identified themes. METHODS: A systematic review of the main six databases from inception to September 2018 was undertaken to identify primary qualitative studies reporting on the HRQoL of patients with carotid artery stenosis. The quality of studies was assessed using the Critical Appraisal Skills Programme (CASP) criteria...
October 17, 2018: Patient
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
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
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