Alexander Keenan, Chiara Whichello, Hoa H Le, David M Kern, Gabriela S Fernandez, Vicky Turner, Anup Das, Matthew Quaife, Amy Perrin Ross
BACKGROUND: Several sphingosine-1-phosphate receptor (S1PR) modulators are available in the US for treating relapsing forms of multiple sclerosis (RMS). Given that these S1PR modulators have similar efficacy and safety, patients may consider the clinical management characteristics of the S1PR modulators when deciding among treatments. However, none of the S1PR modulators is clearly superior in every aspect of clinical management, and for some treatments, clinical management varies based on a patient's comorbid health conditions (e...
May 15, 2024: Patient
Jennifer A Whitty, Emily Lancsar, Richard De Abreu Lourenco, Kirsten Howard, Elly A Stolk
Choice-based preference elicitation methods such as the discrete choice experiment (DCE) present hypothetical choices to respondents, with an expectation that these hypothetical choices accurately reflect a 'real world' health-related decision context and that consequently the choice data can be held to be a true representation of the respondent's health or treatment preferences. For this to be the case, careful consideration needs to be given to the format of the choice task in a choice experiment. The overarching aim of this paper is to highlight important aspects to consider when designing and 'setting up' the choice tasks to be presented to respondents in a DCE...
May 14, 2024: Patient
Katja C Heinz, Charlotte Beaudart, Damon Willems, Mickaël Hiligsmann
BACKGROUND: Treatment preference research can support shared and informed decision making for currently available atopic dermatitis (AD) treatments, and simultaneously guide research and development for future therapies. In this systematic literature review, we aimed to provide an overview of preferences for AD treatments. METHODS: This systematic literature review was conducted in the Medline and Embase (via Ovid) databases, supplemented by manual searching. Quantitative research published from 2010 to September 2023 that investigated preferences for AD treatments were included...
May 9, 2024: Patient
Jiawei Geng, Ran Li, Xinyu Wang, Rongfang Xu, Jibin Liu, Haiyan Jiang, Gaoren Wang, Therese Hesketh
BACKGROUND AND OBJECTIVES: Increasing longevity and advances in treatment have increased the cancer burden in the elderly, resulting in complex follow-up care needs; however, in China, little is known about the follow-up care preferences of these patients. This study quantified older cancer patients' preferences for follow-up care and examined the trade-offs they are willing to make to accept an alternative follow-up model. METHODS: A discrete choice experiment was conducted among inpatients aged over 60 years with breast, prostate, or colorectal cancer, at two large tertiary hospitals in Nantong, China...
May 3, 2024: Patient
Sandra Chyderiotis, Jonathan Sicsic, Amandine Gagneux-Brunon, Jocelyn Raude, Anne-Sophie Barret, Sébastien Bruel, Aurélie Gauchet, Anne-Sophie Le Duc Banaszuk, Morgane Michel, Bruno Giraudeau, Nathalie Thilly, Judith E Mueller
BACKGROUND: With the aim to optimize communication during HPV vaccination campaigns in France, we elicited parental preferences around HPV vaccination. METHODS: We conducted a single-profile discrete choice experiment (DCE) among parents of 11- to 14-year-old middle-school pupils, who completed an anonymous, self-administered, internet-based questionnaire during 2020-2021. The DCE comprised five attributes (vaccine-preventable disease, justification of optimal age, information on safety, indirect protection and coverage) of vaccination against an unnamed disease that were presented to respondents in ten choice tasks, or scenarios...
May 1, 2024: Patient
Semra Ozdemir, Matthew Quaife, Ateesha F Mohamed, Richard Norman
This paper focuses on survey administration and data collection methods employed for stated-preference studies in health applications. First, it describes different types of survey administration methods, encompassing web-based surveys, face-to-face (in-person) surveys, and mail surveys. Second, the concept of sampling frames is introduced, clarifying distinctions between the target population and survey frame population. The discussion then extends to different types of sampling methods, such as probability and non-probability sampling, along with an evaluation of potential issues associated with different sampling methods within the context of health preference research...
April 25, 2024: Patient
Ling-Hsiang Chuang, Huanlan Zhang, Tianqi Hong, Shitong Xie
PURPOSE: To quantify the preferences for an oral antidiabetic drug (OAD) among patients with type 2 diabetes mellitus (T2DM) in China. METHODS: A discrete choice experiment (DCE) with hypothetical OAD profiles was performed among patients with T2DM recruited from both online and offline sources. Each patient completed 12 DCE choice tasks. The attributes, elicited through mixed methods, include blood glucose level decrease, blood glucose level stability, frequency of medication, gastrointestinal side effects, dose adjustment and out-of-pocket expense...
April 20, 2024: Patient
Caroline Vass, Marco Boeri, Gemma Shields, Jaein Seo
The interest in quantifying stated preferences for health and healthcare continues to grow, as does the technology available to support and improve health preference studies. Technological advancements in the last two decades have implications and opportunities for preference researchers designing, administering, analysing, interpreting and applying the results of stated preference surveys. In this paper, we summarise selected technologies and how these can benefit a preference study. We discuss empirical evaluations of the technology in preference research, with examples from health where possible...
April 17, 2024: Patient
Adam E J Gibson, Waqas Ahmed, Louise Longworth, Bryan Bennett, Melinda Daumont, Liz Darlison
BACKGROUND: Malignant pleural mesothelioma (MPM) is a rare and usually fatal malignancy frequently linked to occupational asbestos exposures and associated with poor prognosis and considerable humanistic burden. The study aimed to develop conceptual models of the health-related quality of life (HRQoL) impact on patients with and receiving treatment for MPM, and the burden on their caregivers. METHODS: This multi-country study (Australia and United Kingdom) adopted a qualitative methodology to conduct semi-structured, independent interviews with people with MPM (n = 26), current caregivers (n = 20), and caregivers of people who had recently died because of MPM (n = 4)...
April 15, 2024: Patient
Shayma Mohammed Selim, Sameera Senanayake, Steven M McPhail, Hannah E Carter, Sundresan Naicker, Sanjeewa Kularatna
BACKGROUND: It is essential to consider the evidence of consumer preferences and their specific needs when determining which strategies to use to improve patient attendance at scheduled healthcare appointments. OBJECTIVES: This study aimed to identify key attributes and elicit healthcare consumer preferences for a healthcare appointment reminder system. METHODS: A discrete choice experiment was conducted in a general Australian population sample...
April 11, 2024: Patient
Minna Grahvendy, Bena Brown, Laurelie R Wishart
BACKGROUND AND OBJECTIVE: The history of clinical trials is fraught with unethical practices. Since 1945, robust frameworks have evolved to standardise the collection and reporting of safety data, most notably, the Common Terminology Criteria for Adverse Events (CTCAE) from the National Cancer Institute; used by investigators to report side effects experienced by participants. As medicine moves into the patient-centred model, interest has been growing to collect data on adverse events directly from participants (patient-reported adverse events)...
April 8, 2024: Patient
Christel Hendrieckx, Sienna Russell-Green, Timothy Skinner, Ashley H Ng, Chris Lee, Siobhan Barlow, Alan Davey, Caitlin Rogers, Elizabeth Holmes-Truscott, Jane Speight
OBJECTIVE: We aimed to identify the health and quality-of-life research priorities of Australians with diabetes or family members. METHODS: Through an iterative, three-step, online survey process we (1) qualitatively generated research topics (long list) in response to one question "What research is needed to support people with diabetes to live a better life?"; (2) determined the most important research questions (short list); and (3) ranked research questions in order of importance (priorities)...
April 6, 2024: Patient
Natalie V J Aldhouse, Eric K H Chan, Tamara Al-Zubeidi, Stephanie McKee, Valérie Oriol Mathieu, Antoine C El Khoury, Helen Kitchen
BACKGROUND: Despite advances in human immunodeficiency virus (HIV) prevention methods, such as the advent of pre-exposure prophylaxis (PrEP), the number of people with newly acquired HIV remains high, particularly in at-risk groups. A prophylactic HIV vaccine could contribute to reduced disease prevalence and future transmission and address limitations of existing options, such as suboptimal long-term adherence to PrEPs. METHODS: This qualitative study aimed to capture perceptions towards and acceptance of prophylactic HIV vaccination in three adult populations in the United States: the general population, 'at-risk' individuals (e...
April 6, 2024: Patient
Jamie L Waterland, Cassandra Beer, Rowan Forbes Shepherd, Laura E Forrest
No abstract text is available yet for this article.
March 30, 2024: Patient
Jennifer Drahos, Adriana Boateng-Kuffour, Melanie Calvert, Laurice Levine, Neelam Dongha, Nanxin Li, Zahra Pakbaz, Farrukh Shah, Antony P Martin
BACKGROUND: Individuals living with transfusion-dependent β-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts. OBJECTIVE: This study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT...
March 26, 2024: Patient
Patricia Kenny, Deborah J Street, Jane Hall, Meera R Agar, Jane Phillips
BACKGROUND: Population preferences for care at the end of life can inform palliative care policy and direction. Research investigating preferences for care at the end of life has focused predominantly on the context of advanced cancer, with relatively little attention to other life-limiting illnesses that are common causes of death. OBJECTIVES: We aimed to investigate preferences for the care of older people at the end of life in three different disease contexts...
March 18, 2024: Patient
Kathleen Beusterien, Oliver Will, Emuella Flood, Susan McCutcheon, deMauri S Mackie, Stella Mokiou
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 capable of estimating preferences for the entirety of a pathway involving a sequence of different treatments. METHODS: Patients with early breast cancer completed an online discrete choice experiment to assess preferences for eight key early breast cancer attributes...
March 15, 2024: Patient
Deborah A Marshall, Nitya Suryaprakash, Danielle C Lavallee, Tamara L McCarron, Sandra Zelinsky, Karis L Barker, Gail MacKean, Maria J Santana, Paul Moayyedi, Stirling Bryan
BACKGROUND: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. METHODS: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers...
March 15, 2024: Patient
Yanjun Sun, Yiping Wang, Huiying Zhang, Zhiqing Hu, Yuhao Ma, Yuan He
BACKGROUND: Chinese rural women aged 35-64 years are encouraged to complete breast cancer screening (BCS) free of charge. However, it is challenging to reach a satisfying BCS uptake rate. In this study, rural women's preferences and preferences heterogeneity were measured for the development of strategies to enhance participation in BCS. METHODS: A cross-sectional survey with a discrete choice experiment (DCE) was conducted via convenience sampling via face-to-face interviews in Jiangsu, China...
March 14, 2024: Patient
Ari Gnanasakthy, Carla Romano DeMuro
No abstract text is available yet for this article.
March 11, 2024: Patient
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