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    • The patient Journal

    Papers
    Conducting Patient-Oriented Research in Low-Income and Middle-Income Countries: A Scoping Review
    Bukola Mary Ibitoye,Bernie Garrett,Manon Ranger,Jennifer Stinson
    The Patient - Patient-Centered Outcomes Research（2022）
    Background Patient-oriented research involves extensive collaboration with patients, their families, caregivers, clinicians and other relevant stakeholders to identify and investigate problems and outcomes relevant to patients. Patient-oriented research can help develop effective...
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    Patient Preferences for Multi-Cancer Early Detection (MCED) Screening Tests
    Heather Gelhorn,Melissa M. Ross,Anuraag R. Kansal,Eric T. Fung,Michael V. Seiden,Nicolas Krucien,Karen C. Chung
    Patient（2022）
    BACKGROUND:Emerging blood-based multi-cancer early detection (MCED) tests can detect a variety of cancer types across stages with a range of sensitivity, specificity, and ability to predict the origin of the cancer signal. However, little is known about the general US population'...
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    Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study
    Willems Damon,Hiligsmann Mickael,van der Zee Hessel H,Sayed Christopher J,Trimbos Institute of Mental Health and Addiction
    Patient（2021）
    BACKGROUND AND OBJECTIVE:Hidradenitis suppurativa (HS) is an inflammatory skin disease with a profound effect on patients' quality of life. The patient's journey to manage HS is often complex and unsuccessful, which motivates the aim of this research to gain insight into unmet ne...
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    Practical Considerations in Using Online Modified-Delphi Approaches to Engage Patients and Other Stakeholders in Clinical Practice Guideline Development
    Dmitry Khodyakov,Sean Grant,Brian Denger,Kathi Kinnett,Ann Martin,Holly Peay,Ian Coulter
    Patient（2019）
    Patients and caregivers are increasingly recognized as key stakeholders in developing clinical practice guidelines (CPGs). Online engagement approaches offer the promise of a rigorous, scalable, and convenient engagement method. This paper illustrates how an online modified-Delph...
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    Improving Outcome-Driven Care in Multiple Myeloma Using Patient-Reported Outcomes: A Qualitative Evaluation Study
    Christine Bennink,Marleen de Mul,Marjolein van der Klift,Annemiek Broijl,Lidwine Tick,Eva de Jongh,Mirjam Garvelink,Dorien Lobbezoo,Pieter Sonneveld,Jan Hazelzet
    PATIENT-PATIENT CENTERED OUTCOMES RESEARCH（2023）
    BACKGROUND AND OBJECTIVE:Multiple myeloma is an incurable disease with a considerable illness and treatment burden, which negatively impacts patients' quality of life. This study aimed to evaluate the implementation of multiple myeloma care in five Dutch hospitals, related to the...
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    A Novel Approach to Computing Preference Estimates for Different Treatment Pathways: an Application in Oncology
    Kathleen Beusterien,Oliver Will,Emuella Flood,Susan McCutcheon,deMauri S. Mackie,Stella Mokiou
    Patient（2024）
    Background Patients with cancer may progress through multiple treatments with differing adverse effect profiles. Moreover, pathways may be fixed or flexible in allowing for escalation or de-escalation of treatment depending on interim outcomes. We sought to develop a methodology ...
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    The Impact of Chronic Urticaria from the Patient’s Perspective: A Survey in Five European Countries
    Maria-Magdalena Balp,Jeffrey Vietri,Haijun Tian,Gina Isherwood
    The Patient - Patient-Centered Outcomes Research（2015）
    Background Chronic spontaneous urticaria (CSU) is associated with considerable burden, but data from European patients are limited. Methods This study is a retrospective, cross-sectional analysis of National Health and Wellness Survey data from the five largest EU countries (5EU:...
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    EQ-5D Health Utility Scores: Data from a Comprehensive Canadian Cancer Centre
    Hiten Naik,Doris Howell,Susie Su,Xin Qiu,M. Catherine Brown,Ashlee Vennettilli,Margaret Irwin,Vivien Pat,Hannah Solomon,Tian Wang,Henrique Hon,Lawson Eng,
    Patient（2016）
    To improve the precision of health economics analyses in oncology, reference datasets of health utility (HU) scores are needed from cancer survivors across different disease sites. These data are particularly sparse amongst Canadian survivors.
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    How Well Do the Generic Multi-attribute Utility Instruments Incorporate Patient and Public Views into Their Descriptive Systems
    Katherine J. Stevens
    Patient（2016）
    Multi-attribute utility instruments (MAUIs) are increasingly being used to generate utility data, which can be used to calculate quality-adjusted life-years (QALYs). These QALY data can then be incorporated into a cost–utility analysis as part of an economic evaluation, to inform...
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    Qualitative Research Informing a Preference Study on Selecting Cannabis for Cancer Survivor Symptom Management: Design of a Discrete Choice Experiment
    Bentley, Colene,Izadi-Najafabadi, Sara,Raymakers, Adam,McTaggart-Cowan, Helen
    Patient（2022）
    Introduction The legalization of recreational cannabis use can enable cancer survivors to manage aspects of their care with cannabinoids without medical authorization or stigmatization. However, the absence of medical guidance—from the scientific literature or the healthcare syst...
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    Giving Patients’ Preferences a Voice in Medical Treatment Life Cycle: the PREFER Public–Private Project
    Esther W. de Bekker-Grob,Conny Berlin,Bennett Levitan,Karim Raza,Kalliopi Christoforidi,Irina Cleemput, Jana Pelouchova,Harald Enzmann,Nigel Cook,Mats G. Hansson
    The Patient - Patient-Centered Outcomes Research（2017）
    The patient perspective is important in all medical research, particularly in developing new treatments (i.e., drugs, medical devices, and vaccines).Treatments are developed for patients, and there is an emerging consensus that patients should be involved at crucial decision poin...
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    Seeking What Matters
    Musa Mayer
    The Patient - Patient-Centered Outcomes Research（2012）
    In their excellent and timely article ‘Patient and public involvement in patient-reported outcome measures: evolution not revolution,’[1] Sophie Staniszewska and colleagues make important points about the contribution of patients to the development of patient-reported outcome mea...
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    Engaging Older Adults in Health Care Decision-Making: A Realist Synthesis
    Jacobi Elliott,Heather McNeil,Jessica Ashbourne,Kelsey Huson,Veronique Boscart,Paul Stolee
    The Patient - Patient-Centered Outcomes Research（2016）
    Background Engagement in healthcare decision making has been recognized as an important, and often lacking, aspect of care, especially in the care of older adults who are major users of the healthcare system.Objective We aimed to conduct a review of available knowledge on engagem...
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    A Systematic Review Comparing the Acceptability, Validity and Concordance of Discrete Choice Experiments and Best–Worst Scaling for Eliciting Preferences in Healthcare
    Jennifer A. Whitty,Ana Sofia Oliveira Gonçalves
    The Patient - Patient-Centered Outcomes Research（2017）
    OBJECTIVE:The aim of this study was to compare the acceptability, validity and concordance of discrete choice experiment (DCE) and best-worst scaling (BWS) stated preference approaches in health.METHODS:A systematic search of EMBASE, Medline, AMED, PubMed, CINAHL, Cochrane Librar...
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    The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature
    Randall Winnette,Lisa M. Hess,Steven J. Nicol,Datchen Fritz Tai,Catherine Copley-Merriman
    The patient（2017）
    Background Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being.Objective The aim of this review was to bet...
    Cited32Views0
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