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https://read.qxmd.com/read/30820841/measuring-the-burden-of-schizophrenia-using-clinician-and-patient-reported-measures-an-exploratory-analysis-of-construct-validity
#1
Matthew Franklin, Clara Mukuria, Brendan Mulhern, Irwin Tran, John Brazier, Stuart Watson
BACKGROUND: Various self-reported or clinician-reported (as a proxy) measures exist to quantify the burden of schizophrenia on patients. Evidence of the psychometric relationship between these measures to inform their practical use is limited. OBJECTIVES: Our objective was to conduct an exploratory analysis of the construct validity of patient-reported (EQ-5D, SF-6D, WEMWBS, SQLS subscales of Psychosocial, Motivation, Symptoms) versus clinician-reported measures (PANSS, CGI-SCH, NSA-4, HoNOS-PbR) to inform future use of patient-reported measures for burden-of-illness assessment and/or economic evaluation...
March 1, 2019: Patient
https://read.qxmd.com/read/30806967/community-based-participatory-research-incorporating-the-integral-voice-of-community-in-study-design
#2
LETTER
Desirree Pizarro, Nicole K Richards, Susan Coots, Elizabeth Crockett, Christopher P Morley, Brooke A Levandowski
No abstract text is available yet for this article.
February 26, 2019: Patient
https://read.qxmd.com/read/30714084/health-related-quality-of-life-in-patients-with-adult-onset-myotonic-dystrophy-type-1-a-systematic-review
#3
REVIEW
Erik Landfeldt, Josefin Edström, Cecilia Jimenez-Moreno, Baziel G M van Engelen, Janbernd Kirschner, Hanns Lochmüller
BACKGROUND: Adult-onset myotonic dystrophy type 1 (DM1) is a chronic, multisystem disorder that leads to disability and premature death. OBJECTIVES: The objective of our study was to conduct a systematic literature review of the health-related quality of life (HRQoL) of patients with DM1. METHODS: We searched Embase, Web of Science, and PubMed for English language full-text articles reporting results from studies of HRQoL in patients with adult-onset DM1 published between 1 January 2000 and 21 February 2018...
February 4, 2019: Patient
https://read.qxmd.com/read/30666526/patient-community-perspectives-on-real-world-evidence-enhancing-engagement-understanding-and-trust
#4
Elisabeth M Oehrlein, Jennifer S Graff, Jason Harris, Eleanor M Perfetto
BACKGROUND: Healthcare stakeholders have pronounced both enthusiasm and apprehension over the expanding use of real-world evidence (RWE). The patient community-those who benefit from new treatments but are vulnerable to potential safety risks and whose routine medical encounters are used to generate RWE-has been less vocal. Understanding patient perspectives on the use of RWE to guide clinical decision making and inform regulatory decisions and value assessments is imperative. METHODS: We convened a day-long, multi-stakeholder roundtable in Washington D...
January 22, 2019: Patient
https://read.qxmd.com/read/30659513/patient-and-oncologist-preferences-for-the-treatment-of-adults-with-advanced-soft-tissue-sarcoma-a-discrete-choice-experiment
#5
Jasmina Ivanova, Lisa M Hess, Viviana Garcia-Horton, Sophia Graham, Xinyue Liu, Yajun Zhu, Steven Nicol
BACKGROUND: There has been no single standard-of-care treatment of patients with advanced/metastatic soft tissue sarcoma (STS). This study was designed to understand patient and oncologist preferences in the advanced/metastatic setting. METHODS: Adult patients diagnosed with STS and oncologists treating patients with STS completed discrete choice experiment surveys. Study participants chose between pairs of hypothetical treatment profiles for advanced STS characterized by varying levels of overall survival (14, 20, or 26 months), progression-free survival (3, 5, or 7 months), objective tumor response rate (12, 18, or 26%), risk of hospitalization due to side effects (12, 30, or 46%), and days/month to administer treatment (1, 2, or 4 days)...
January 19, 2019: Patient
https://read.qxmd.com/read/30607809/eq-5d-5l-is-more-responsive-than-eq-5d-3l-to-treatment-benefit-of-cataract-surgery
#6
Mihir Gandhi, Marcus Ang, Kelvin Teo, Chee Wai Wong, Yvonne Chung-Hsi Wei, Rachel Lee-Yin Tan, Mathieu F Janssen, Nan Luo
BACKGROUND: It is not clear whether 5-level EQ-5D (EQ-5D-5L) utilities based on recently developed value sets are more responsive than 3-level EQ-5D (EQ-5D-3L) utilities. OBJECTIVES: The study aims were to compare (1) the responsiveness of EQ-5D-5L and EQ-5D-3L utilities and (2) the responsiveness of these utilities with the Short Form-6 Dimension (SF-6D) and Health Utilities Index Mark 3 (HUI3) utilities to the treatment benefit of cataract surgery. METHODS: A total of 148 patients were interviewed before and after their cataract surgery using EQ-5D-3L, EQ-5D-5L, SF-6D, and HUI3...
January 4, 2019: Patient
https://read.qxmd.com/read/30270403/acceptability-of-patient-reported-outcome-and-experience-measures-for-hepatitis-c-treatment-among-people-who-use-drugs
#7
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...
April 2019: Patient
https://read.qxmd.com/read/30519830/symptoms-and-impacts-in-metastatic-castration-resistant-prostate-cancer-qualitative-findings-from-patient-and-physician-interviews
#8
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...
February 2019: Patient
https://read.qxmd.com/read/30565073/the-value-of-treatment-processes-in-germany-a-discrete-choice-experiment-on-patient-preferences-in-complementary-and-conventional-medicine
#9
Daniela Adam, Theresa Keller, Axel Mühlbacher, Maximilian Hinse, Katja Icke, Michael Teut, Benno Brinkhaus, Thomas Reinhold
BACKGROUND: The effects of health interventions are often complex, and it is argued that they comprise more than pure changes in clinical parameters. Aspects of the treatment process, so-called 'benefits beyond health', are often overlooked in the evaluation of health interventions but can be of value to the patients. OBJECTIVES: The aim of this study was to assess patients' preferences and willingness to pay regarding the treatment process and its attributes in patients using acupuncture, homeopathy or general medicine (GM)...
December 19, 2018: Patient
https://read.qxmd.com/read/30556095/elicitation-of-health-related-utility-in-perianal-fistula-in-crohn-s-disease
#10
Louise Longworth, Donna Fountain, Jeshika Singh, Ismail Azzabi, Glynn Owen, Ulf Lundstam, Shaji Sebastian
BACKGROUND AND OBJECTIVE: Perianal fistulae are a common complication of Crohn's disease (CD) and pose a substantial burden on quality of life. Data capturing health-related utility associated with perianal fistulae in CD are scarce. The current study aims to value health states related to different stages of the disease to quantitatively evaluate the impact of complex perianal fistulae on CD patients' quality of life. METHODS: Eight health state descriptions associated with complex perianal fistulae in CD were developed following qualitative research with patients and validation by clinicians...
December 17, 2018: Patient
https://read.qxmd.com/read/30506438/authors-reply-to-montoya-et-al-comment-on-tools-measuring-quality-of-death-dying-and-care-completed-after-death-systematic-review-of-psychometric-properties
#11
LETTER
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
https://read.qxmd.com/read/30506437/comment-on-tools-measuring-quality-of-death-dying-and-care-completed-after-death-systematic-review-of-psychometric-properties
#12
LETTER
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
https://read.qxmd.com/read/30270402/patient-consent-disconnects-in-clinical-research
#13
LETTER
Neal W Dickert, JoAnne Brabson, Rodney J Hunter, Michele Riedford
No abstract text is available yet for this article.
December 2018: Patient
https://read.qxmd.com/read/30051315/putting-patients-at-the-centre-of-healthcare-progress-and-challenges-for-health-technology-assessments
#14
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...
December 2018: Patient
https://read.qxmd.com/read/29968179/oh-the-places-we-ll-go-patient-reported-outcomes-and-electronic-health-records
#15
EDITORIAL
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...
December 2018: Patient
https://read.qxmd.com/read/29855976/development-of-a-discrete-choice-experiment-dce-questionnaire-to-understand-veterans-preferences-for-tobacco-treatment-in-primary-care
#16
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...
December 2018: Patient
https://read.qxmd.com/read/29802539/unlocking-the-value-of-literature-in-health-co-design-transforming-patient-experience-publications-into-a-creative-and-accessible-card-tool
#17
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...
December 2018: Patient
https://read.qxmd.com/read/29777517/spillover-effects-of-maternal-chronic-disease-on-children-s-quality-of-life-and-behaviors-among-low-income-families
#18
Vivian Y W Guo, Carlos K H Wong, Rosa S M Wong, Esther Y T Yu, Patrick Ip, Cindy L K Lam
BACKGROUND: Mothers with chronic diseases may have spillover effects on their children. OBJECTIVE: The aim of this study was to estimate the spillover effects of mothers with chronic disease on their children's health-related quality of life (HRQOL) and behavior. METHOD: A cross-sectional study was conducted on 255 mother-child pairs (130 boys and 125 girls, mean age 8.4 years) from low-income Chinese families. We asked the mothers to self-report any doctor-diagnosed chronic diseases, and evaluate their children's HRQOL and behaviors with the Child Health Questionnaire-Parent Form-50 (CHQ-PF50) and the Strengths and Difficulties Questionnaire (SDQ), respectively...
December 2018: Patient
https://read.qxmd.com/read/30488236/creation-of-a-decision-support-tool-for-expectant-parents-facing-threatened-periviable-delivery-application-of-a-user-centered-design-approach
#19
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
https://read.qxmd.com/read/30484084/high-proportion-of-subjective-component-to-the-disease-activity-score-is-associated-with-favorable-response-to-abatacept-in-rheumatoid-arthritis
#20
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
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