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https://www.readbyqxmd.com/read/28432593/talking-about-breast-cancer-which-symptoms-and-treatment-side-effects-are-important-to-patients-with-advanced-disease
#1
Anna Niklasson, Jean Paty, Anna Rydén
BACKGROUND: Patients' experience of symptoms and associated treatment is an increasingly important consideration in both regulatory and health technology assessments, and can inform treatment decisions. OBJECTIVE: This study aimed to gain insight directly from patients with advanced breast cancer about which symptoms and treatment side effects are important to them. METHODS: Women with locally advanced or metastatic breast cancer were interviewed individually by trained interviewers, using a semi-structured interview guide...
April 21, 2017: Patient
https://www.readbyqxmd.com/read/28425062/patients-lived-experiences-of-nocturia-a-qualitative-study-of-the-evening-the-night-and-the-next-day
#2
Andrew Trigg, Fredrik L Andersson, Natalie V J Aldhouse, Donald L Bliwise, Helen Kitchen
BACKGROUND: Nocturia, waking to urinate two or more times during the night, is a chronic condition associated with significant patient burden due to sleep disruption. This study aimed to explore the lived experiences of patients with nocturia in terms of the disruption to their lives during the night and day. METHODS: Adult patients in the US diagnosed with nocturia were recruited for face-to-face qualitative interviews. Thematic analysis of patients' narratives, taking a phenomenological interpretative approach, summarised their experiences throughout the night and day, including any apparent contrasts between patients...
April 19, 2017: Patient
https://www.readbyqxmd.com/read/28409481/views-of-the-uk-general-public-on-important-aspects-of-health-not-captured-by-eq-5d
#3
Koonal Kirit Shah, Brendan Mulhern, Louise Longworth, M F Janssen
INTRODUCTION: The EQ-5D is a standardised instrument designed for use as a generic measure of health outcome. It was (and is) intended to provide information about a 'common core' of dimensions known to be relevant across a range of conditions; however, the five dimensions may not fully capture the health-related impacts of certain conditions. This study analyses the views of the UK general public about important aspects of health considered to be missing from the instrument. METHODS: Survey respondents were asked whether there are any aspects of health they consider to be important but are not captured by the EQ-5D, and, if so, what these aspects are...
April 13, 2017: Patient
https://www.readbyqxmd.com/read/28397092/author-s-reply-to-braillon-moving-from-patient-advocacy-to-partnership-a-long-and-bumpy-road
#4
LETTER
Durhane Wong-Rieger
No abstract text is available yet for this article.
April 10, 2017: Patient
https://www.readbyqxmd.com/read/28397091/comment-on-moving-from-patient-advocacy-to-partnership-a-long-and-bumpy-road
#5
LETTER
Alain Braillon
No abstract text is available yet for this article.
April 10, 2017: Patient
https://www.readbyqxmd.com/read/28386679/understanding-treatment-burden-for-children-treated-for-growth-hormone-deficiency
#6
Meryl Brod, Lise Højbjerre, Suzanne Lessard Alolga, Jane F Beck, Lars Wilkinson, Michael Højby Rasmussen
OBJECTIVE: Growth hormone deficiency (GHD) treatment for children requires growth hormone injections, typically administered daily until the child reaches adult height. Child GHD treatment burden is not well understood and no disease-specific measures exist to assess this burden. The purpose of the study was to explore GHD treatment burden for children and their parents by conducting concept elicitation interviews supporting a theoretical model of the impact of GHD treatment. METHODS: Four focus groups (in Germany) and 52 telephone interviews (in the UK and USA) were conducted with children/adolescents with GHD aged 8 to <13 years and parents of children with GHD aged ≥4 to <13 years...
April 6, 2017: Patient
https://www.readbyqxmd.com/read/28374286/deliberative-engagement-methods-for-patient-centered-outcomes-research
#7
Stephanie R Morain, Danielle M Whicher, Nancy E Kass, Ruth R Faden
There is growing emphasis on eliciting and incorporating stakeholder perspectives into health research and public policy development. The deliberative engagement session (DES) method provides one approach to elicit informed preferences from patients and other stakeholders on policy issues. DES involves day-long interaction with participants, including short plenary presentations followed by small group discussion. While interest in DES methods is expanding, practical guidance for researchers on this method remains limited...
April 3, 2017: Patient
https://www.readbyqxmd.com/read/28364387/patients-preferences-for-outcome-process-and-cost-attributes-in-cancer-treatment-a-systematic-review-of-discrete-choice-experiments
#8
REVIEW
Daniela R Bien, Marion Danner, Vera Vennedey, Daniele Civello, Silvia M Evers, Mickaël Hiligsmann
INTRODUCTION: As several studies have been conducted to elicit patients' preferences for cancer treatment, it is important to provide an overview and synthesis of these studies. This study aimed to systematically review discrete choice experiments (DCEs) about patients' preferences for cancer treatment and assessed the relative importance of outcome, process and cost attributes. METHODS: A systematic literature review was conducted using PubMed and EMBASE to identify all DCEs investigating patients' preferences for cancer treatment between January 2010 and April 2016...
March 31, 2017: Patient
https://www.readbyqxmd.com/read/28364386/revolutionizing-informed-consent-empowering-patients-with-certified-decision-aids
#9
LETTER
Thaddeus Mason Pope, Daniel Lessler
No abstract text is available yet for this article.
March 31, 2017: Patient
https://www.readbyqxmd.com/read/28364385/patient-preferences-for-pain-management-in-advanced-cancer-results-from-a-discrete-choice-experiment
#10
David M Meads, John L O'Dwyer, Claire T Hulme, Phani Chintakayala, Karen Vinall-Collier, Michael I Bennett
BACKGROUND: Pain from advanced cancer remains prevalent, severe and often under-treated. AIM: The aim of this study was to conduct a discrete choice experiment with patients to understand their preferences for pain management services and inform service development. METHODS: Focus groups were used to develop the attributes and levels of the discrete choice experiment. The attributes were: waiting time, type of healthcare professional, out-of-pocket costs, side-effect control, quality of communication, quality of information and pain control...
March 31, 2017: Patient
https://www.readbyqxmd.com/read/28364384/speaking-up-how-patient-and-physician-voices-shaped-a-trial-to-improve-goals-of-care-discussions
#11
Rachel Solomon, Cardinale Smith, Jay Kallio, Amy Fenollosa, Barbara Benerofe, Laurence Jones, Kerin Adelson, Jason P Gonsky, Carolyn Messner, Nina A Bickell
BACKGROUND: Patients with advanced cancer benefit from early goals-of-care (GoC) conversations, but few facilitators are known. OBJECTIVE: We describe the process and outcomes of involving patient and physician stakeholders in the design and development of a trial, funded by the Patient-Centered Outcomes Research Institute (PCORI), to enhance oncologists' communication skills and their propensity to facilitate productive, meaningful GoC discussions with patients with advanced cancer...
March 31, 2017: Patient
https://www.readbyqxmd.com/read/28357591/development-and-pretesting-of-a-questionnaire-to-assess-patient-experiences-and-satisfaction-with-medications-pesam-questionnaire
#12
Merel L Kimman, Adrienne H Rotteveel, Marlies Wijsenbeek, Rémy Mostard, Nelleke C Tak, Xana van Jaarsveld, Marjolein Storm, Kioa L Wijnsma, Marielle Gelens, Nicole C A J van de Kar, Jack Wetzels, Carmen D Dirksen
BACKGROUND: The aim of this study was to develop, together with the Lung Foundation Netherlands and Dutch Kidney Patients Association, patients and clinicians, a measure to evaluate patient experiences with the orphan drugs pirfenidone (for idiopathic pulmonary fibrosis [IPF]) and eculizumab (for atypical haemolytic uraemic syndrome [aHUS]), as well as a generic measure of patient experiences and satisfaction with medications. METHODS: Development of the Patient Experiences and Satisfaction with Medications (PESaM) questionnaire consisted of four phases: literature review (phase I); focus groups and individual patient interviews (phase II); item generation (phase III); and face and content validity testing (phase IV)...
March 29, 2017: Patient
https://www.readbyqxmd.com/read/28353221/health-related-quality-of-life-in-chronic-hcv-infected-patients-switching-to-pegylated-interferon-free-regimens-anrs-co20-cupic-cohort-study-and-sirius-trial
#13
Maria Patrizia Carrieri, Camelia Protopopescu, Zobair Younossi, Antoine Vilotitch, Hélène Fontaine, Ventzislava Petrov-Sanchez, Fabienne Marcellin, Fabrice Carrat, Christophe Hézode, Marc Bourlière
OBJECTIVE: We aimed to compare health-related quality of life (HRQL) during and after hepatitis C virus (HCV) treatment in patients receiving pegylated-interferon (PEG-IFN)-containing therapy (including boceprevir or telaprevir-ANRS CO20 CUPIC cohort) who subsequently switched to PEG-IFN-free regimens (sofosbuvir + ledipasvir with or without ribavirin [RBV]-SIRIUS trial). METHODS: Two analyses were performed. The first compared physical (PCS) and mental (MCS) HRQL (MOS SF-12) scores during treatment between CUPIC and SIRIUS...
March 28, 2017: Patient
https://www.readbyqxmd.com/read/28353220/patient-experience-of-symptoms-and-side-effects-when-treated-with-osimertinib-for-advanced-non-small-cell-lung-cancer-a-qualitative-interview-substudy
#14
Anna Rydén, Fiona Blackhall, Hye Ryun Kim, Rathi N Pillai, Lauren Braam, Mona L Martin, Andrew Walding
INTRODUCTION: Capturing the patient experience during treatment is important to both regulatory authorities and to patients starting treatment. We identified the symptoms and side effects experienced by patients with advanced non-small-cell lung cancer during osimertinib treatment, to understand treatment expectations, satisfaction, and the level of difficulty coping with the side effects experienced during treatment. METHODS: Qualitative interviews (approximately 4-6 weeks after treatment initiation and again after approximately 4 months of treatment) were conducted during the phase I/II AURA clinical trial of osimertinib, a tyrosine kinase inhibitor of epidermal growth factor receptor-sensitizing and T790M resistance mutations...
March 28, 2017: Patient
https://www.readbyqxmd.com/read/28343292/psychometric-validation-of-the-heart-failure-caregiver-questionnaire-hf-cq-%C3%A2
#15
Anna Strömberg, Nicola Bonner, Laura Grant, Bryan Bennett, Misook L Chung, Tiny Jaarsma, Marie Louise Luttik, Eldrin F Lewis, Frederico Calado, Celine Deschaseaux
BACKGROUND: The Heart Failure Caregiver Questionnaire (HF-CQ(®)) was developed to assess subjective outcomes of heart failure caregivers. The HF-CQ(®) comprises 21 questions on three domains, namely physical, emotional/psychological and lifestyle. The objective of this study was to evaluate the psychometric properties of the HF-CQ(®). METHODS: Patients (n = 150) with heart failure and their primary caregivers (n = 150) were recruited from 11 sites in USA...
March 25, 2017: Patient
https://www.readbyqxmd.com/read/28332032/qualitative-assessment-of-the-symptoms-and-impact-of-pancreatic-exocrine-insufficiency-pei-to-inform-the-development-of-a-patient-reported-outcome-pro-instrument
#16
Colin D Johnson, Rob Arbuckle, Nicola Bonner, Gary Connett, Enrique Dominguez-Munoz, Philippe Levy, Doris Staab, Nicola Williamson, Markus M Lerch
BACKGROUND: Pancreatic exocrine insufficiency (PEI) affects patients with chronic pancreatitis (CP) and cystic fibrosis (CF) who produce insufficient digestive pancreatic enzymes. Common symptoms include steatorrhoea, diarrhea, and abdominal pain. OBJECTIVE: The objective of the study was to develop and test the content validity of a patient-reported outcome (PRO) instrument assessing PEI symptoms and their impact on health-related quality of life. METHODS: Instrument development was supported by a literature review, expert physician interviews (n = 10: Germany 4, UK 3, France 3), and exploratory, qualitative, concept-elicitation interviews with patients with CF and CP with PEI (n = 61: UK 29, Germany 18, France 14) and expert physicians (n = 10)...
March 22, 2017: Patient
https://www.readbyqxmd.com/read/28315192/discrete-choice-experiment-attribute-selection-using-a-multinational-interview-study-treatment-features-important-to-patients-with-type-2-diabetes-mellitus
#17
Anna Rydén, Stephanie Chen, Emuella Flood, Beverly Romero, Susan Grandy
INTRODUCTION: Methods for discrete choice experiment (DCE) attribute and attribute-level selection have not yet been firmly established and are rarely reported in detail. This paper describes a qualitative study designed to inform the development of a DCE survey designed to examine preferences for glucagon-like peptide-1 receptor agonist (GLP-1RA) treatments among patients with type 2 diabetes mellitus. METHODS: The study involved a literature review, interviews with clinical experts, and interviews with GLP-1RA-experienced (i...
March 17, 2017: Patient
https://www.readbyqxmd.com/read/28285412/symptoms-and-impacts-in-non-metastatic-castration-resistant-prostate-cancer-qualitative-study-findings
#18
Erin L Tomaszewski, Pierre Moise, Robert N Krupnick, Jared Downing, Margaret Meyer, Shevani Naidoo, Stefan Holmstrom
OBJECTIVES: We developed a conceptual model to define key concepts associated with patients' experiences with the signs, symptoms, and impacts of non-metastatic castration-resistant prostate cancer (M0-CRPC). METHODS: A targeted review of peer-reviewed literature, and other publicly available information, identified and categorized symptoms and impacts related to early-stage prostate cancer. Semi-structured interviews with five clinical experts helped determine the most relevant and important concepts for patients with M0-CRPC...
March 11, 2017: Patient
https://www.readbyqxmd.com/read/28271387/development-of-a-patient-reported-palliative-care-specific-health-classification-system-the-pos-e
#19
Mendwas Dzingina, Irene J Higginson, Paul McCrone, Fliss E M Murtagh
BACKGROUND: Generic preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care. OBJECTIVE: Our objective was to derive a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care...
March 7, 2017: Patient
https://www.readbyqxmd.com/read/28258505/preparing-parents-to-make-an-informed-choice-about-antibiotic-use-for-common-acute-respiratory-infections-in-children-a-randomised-trial-of-brief-decision-aids-in-a-hypothetical-scenario
#20
Peter D Coxeter, Chris B Del Mar, Tammy C Hoffmann
BACKGROUND: Childhood acute respiratory infections (ARIs) are one of the most common reasons for primary care consultations and for receiving an antibiotic. Public awareness of antibiotic benefit and harms for these conditions is low. To facilitate informed decision making, ideally in collaboration with their doctor, parents need clear communication about benefits and harms. Decision aids may be able to facilitate this process. OBJECTIVE: The aim of this study was to evaluate the effectiveness of three decision aids about antibiotic use for common ARIs in children...
March 4, 2017: Patient
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