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https://www.readbyqxmd.com/read/28808991/light-chain-al-amyloidosis-the-journey-to-diagnosis
#1
Kristen L McCausland, Michelle K White, Spencer D Guthrie, Tiffany Quock, Muriel Finkel, Isabelle Lousada, Martha S Bayliss
BACKGROUND: Light chain (AL) amyloidosis is a rare, complex disease associated with significant morbidity and mortality. Delays in diagnosis are common and may have detrimental consequences on patients' prognosis. Too little is known regarding the patient journey to diagnosis. OBJECTIVE: The objective of this study was to describe the patient-reported journey to a correct diagnosis for AL amyloidosis. METHODS: Using a mixed-methods approach, data were collected from clinician (n = 4) and patient (n = 10) interviews and a survey of community-based patients with AL amyloidosis (n = 341)...
August 14, 2017: Patient
https://www.readbyqxmd.com/read/28795338/evaluation-of-patient-and-family-engagement-strategies-to-improve-medication-safety
#2
REVIEW
Julia M Kim, Catalina Suarez-Cuervo, Zackary Berger, Joy Lee, Jessica Gayleard, Carol Rosenberg, Natalia Nagy, Kristina Weeks, Sydney Dy
BACKGROUND: Patient and family engagement (PFE) is critical for patient safety. We systematically reviewed types of PFE strategies implemented and their impact on medication safety. METHODS: We searched MEDLINE, EMBASE, reference lists and websites to August 2016. Two investigators independently reviewed all abstracts and articles, and articles were additionally reviewed by two senior investigators for selection. One investigator abstracted data and two investigators reviewed the data for accuracy...
August 9, 2017: Patient
https://www.readbyqxmd.com/read/28766071/erratum-to-inaugural-conference-on-incorporating-patient-reported-outcomes-and-patient-preference-information-into-clinical-research-clinical-care-and-risk-benefit-assessments-for-neurodegenerative-diseases
#3
Jennifer L Purks, Erin E Wilhelm, Ira Shoulson, John Creveling, E Ray Dorsey, Telba Irony, Tara M LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot, Karen E Anderson
No abstract text is available yet for this article.
August 1, 2017: Patient
https://www.readbyqxmd.com/read/28741235/making-patient-engagement-a-reality
#4
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...
July 24, 2017: Patient
https://www.readbyqxmd.com/read/28710681/evaluating-the-european-health-literacy-survey-questionnaire-in-patients-with-stroke-a-latent-trait-analysis-using-rasch-modeling
#5
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...
July 14, 2017: Patient
https://www.readbyqxmd.com/read/28710680/development-of-a-novel-tool-to-assess-the-impact-of-itching-in-pediatric-cholestasis
#6
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...
July 14, 2017: Patient
https://www.readbyqxmd.com/read/28688021/inaugural-conference-on-incorporating-patient-reported-outcomes-and-patient-preference-information-into-clinical-research-clinical-care-and-risk-benefit-assessments-for-neurodegenerative-diseases
#7
LETTER
Jennifer L Purks, Erin E Wilhelm, Ira Shoulson, John Creveling, E Ray Dorsey, Telba Irony, Tara M LoCastro, Fernando Pagan, Bernard Ravina, Tanya Simuni, MaryAnne Sterling, Pierre Tariot, Karen E Anderson
No abstract text is available yet for this article.
July 7, 2017: Patient
https://www.readbyqxmd.com/read/28681319/measuring-health-related-quality-of-life-in-adolescent-populations-an-empirical-comparison-of-the-chu9d-and-the-pedsql-tm-4-0-short-form%C3%A2-15
#8
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)...
July 5, 2017: Patient
https://www.readbyqxmd.com/read/28660567/the-best-of-both-worlds-an-example-mixed-methods-approach-to-understand-men-s-preferences-for-the-treatment-of-lower-urinary-tract-symptoms
#9
Divine Ikenwilo, Sebastian Heidenreich, Mandy Ryan, Colette Mankowski, Jameel Nazir, Verity Watson
BACKGROUND: Discrete choice experiments (DCEs) are widely used to quantify individuals' preferences for healthcare. Guidelines recommend the design of DCEs should be informed by qualitative research. However, only a few studies go beyond guidelines by fully presenting qualitative and quantitative research jointly together in a mixed methods approach (MMA). OBJECTIVES: Using an example study about men's preferences for medical treatment of lower urinary tract symptoms (LUTS), we demonstrate how qualitative research can complement DCEs to gain a rich understanding of individuals' preferences...
June 28, 2017: Patient
https://www.readbyqxmd.com/read/28646416/assessing-preference-based-outcome-measures-for-overactive-bladder-an-evaluation-of-patient-reported-outcome-data-from-the-beside-clinical-trial
#10
REVIEW
Mike Herdman, Jameel Nazir, Zalmai Hakimi, Emad Siddiqui, Moses Huang, Marco Pavesi, Scott MacDiarmid, Marcus J Drake, Nancy Devlin
OBJECTIVES: The aim of this study was to compare outcomes using two preference-based measures of health status (EQ-5D-5L and OAB-5D) in patients with overactive bladder (OAB) treated with solifenacin plus mirabegron or solifenacin monotherapy in the BESIDE trial. METHODS: Patients with OAB who remained incontinent after 4 weeks' treatment with solifenacin 5 mg were randomized 1:1:1 to combination treatment (solifenacin 5 mg plus mirabegron [25 mg for the first 4 weeks/50 mg for the last 8 weeks]), solifenacin 5 mg, or solifenacin 10 mg...
June 23, 2017: Patient
https://www.readbyqxmd.com/read/28623629/predicting-euroqol-5-dimensions-5-levels-eq-5d-5l-utilities-from-older-people-s-quality-of-life-brief-questionnaire-opqol-brief-scores
#11
Billingsley Kaambwa, Julie Ratcliffe
BACKGROUND AND OBJECTIVE: Economic evaluation of healthcare treatment and services targeted at older people requires measurement of utility-based quality-of-life outcomes but it is not always possible to collect such outcome data. It may, however, be possible to estimate these outcomes using non-utility measures of quality of life where the latter have been collected. The objective of this study was to develop a regression-based algorithm to map a non-utility-based outcome, the Older People's Quality of Life brief questionnaire (OPQoL-brief), onto a utility-based outcome, the EuroQoL 5 Dimensions 5 Levels (EQ-5D-5L)...
June 16, 2017: Patient
https://www.readbyqxmd.com/read/28623628/does-patient-preference-measurement-in-decision-aids-improve-decisional-conflict-a-randomized-trial-in-men-with-prostate-cancer
#12
Joseph D Shirk, Catherine M Crespi, Josemanuel D Saucedo, Sylvia Lambrechts, Ely Dahan, Robert Kaplan, Christopher Saigal
BACKGROUND: Shared decision making (SDM) has been advocated as an approach to medical decision making that can improve decisional quality. Decision aids are tools that facilitate SDM in the context of limited physician time; however, many decision aids do not incorporate preference measurement. OBJECTIVES: We aim to understand whether adding preference measurement to a standard patient educational intervention improves decisional quality and is feasible in a busy clinical setting...
June 16, 2017: Patient
https://www.readbyqxmd.com/read/28608038/patient-values-and-preferences-surrounding-proton-pump-inhibitor-use-a-scoping-review
#13
REVIEW
Wade Thompson, Cody Black, Vivian Welch, Barbara Farrell, Lise M Bjerre, Peter Tugwell
BACKGROUND: Proton pump inhibitors (PPIs) treat various upper gastrointestinal (GI) diseases. Around 50% of patients may remain on PPIs long-term without ongoing need. Eligible patients should be offered the choice of continuing their PPI or trying to reduce/stop their PPI (deprescribing), a choice dependent on values and preferences. OBJECTIVES: Our objective was to systematically scope the available evidence on patient values and preferences surrounding continued PPI treatment and/or the decision to try a reduction in their PPI...
June 12, 2017: Patient
https://www.readbyqxmd.com/read/28593574/challenges-of-realising-patient-centred-outcomes-for-deaf-patients
#14
Katherine D Rogers, Emma Ferguson-Coleman, Alys Young
In general populations, it has been recognised that patients play a key role in the quality of their own healthcare. However, the idea of realising patient-centred outcomes for the signing Deaf community, who experience the world in a visual way, raises some challenging issues that are rarely acknowledged. Using published research and translational health projects involving Deaf people both in the UK and internationally, this article discusses the challenges of realising patient-centred outcomes for Deaf people who are sign language users...
June 7, 2017: Patient
https://www.readbyqxmd.com/read/28589314/the-health-related-quality-of-life-of-chinese-patients-on-hemodialysis-and-peritoneal-dialysis
#15
Julie Yun Chen, Eric Yuk Fai Wan, Edmond Pui Hang Choi, Anca Ka Chun Chan, Karina Hiu Yen Chan, Joyce Pui Yan Tsang, Cindy Lo Kuen Lam
AIMS: Our aim was to compare health-related quality of life (HRQOL) between end-stage renal disease (ESRD) patients and the Hong Kong general population to identify how the mode of dialysis and other factors were associated with HRQOL. METHODS: We conducted a cross-sectional study involving 253 hemodialysis (HD) patients and 103 peritoneal dialysis (PD) patients recruited in 2014-2015. Their HRQOL was evaluated using Kidney Disease and Quality of Life-36 (KDQOL-36) sub-scale scores and the Short Form-6 Dimensions (SF-6D) health preference score...
June 6, 2017: Patient
https://www.readbyqxmd.com/read/28616767/art-and-science-of-instrument-development-for-stated-preference-methods
#16
EDITORIAL
Ellen M Janssen, John F P Bridges
No abstract text is available yet for this article.
August 2017: Patient
https://www.readbyqxmd.com/read/28597378/assessment-of-individual-patient-preferences-to-inform-clinical-practice
#17
LETTER
Jennifer Anne Whitty, Liana Fraenkel, Christopher S Saigal, Catharina G M Groothuis-Oudshoorn, Dean A Regier, Deborah A Marshall
No abstract text is available yet for this article.
August 2017: Patient
https://www.readbyqxmd.com/read/28597377/health-preference-research-an-overview
#18
LETTER
Benjamin M Craig, Emily Lancsar, Axel C Mühlbacher, Derek S Brown, Jan Ostermann
No abstract text is available yet for this article.
August 2017: Patient
https://www.readbyqxmd.com/read/28597376/health-valuation-demonstrating-the-value-of-health-and-lifespan
#19
LETTER
Elly A Stolk, Benjamin M Craig, Brendan Mulhern, Derek S Brown
No abstract text is available yet for this article.
August 2017: Patient
https://www.readbyqxmd.com/read/28597375/preferences-for-health-interventions-improving-uptake-adherence-and-efficiency
#20
LETTER
Jan Ostermann, Derek S Brown, Esther W de Bekker-Grob, Axel C Mühlbacher, Shelby D Reed
No abstract text is available yet for this article.
August 2017: Patient
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