Patient

As the pharmaceutical industry advances towards more patient-focused product development, it is well recognized that meaningful patient engagement is required for the authentic patient voice to inform research and regulatory decisions. However, for this to happen systematically and consistently across the industry, there is still a need to evaluate and communicate the value of patient engagement to all stakeholders. Evaluating engagement also informs process improvement, elevating the value further. We describe the development of a conceptual, yet practical, framework for measuring the impact of engagement to achieve this...

INTRODUCTION: Poor adherence to anti-osteoporosis treatment is a well-recognized problem, partly due to misalignment with patient preferences. In recent years, several quantitative preference studies have been conducted. This study aimed to systematically review stated preference research to provide a comprehensive overview of patient preferences in osteoporosis, in particular on conditional relative attribute importance and preference heterogeneity. METHODS: This systematic review was conducted in MEDLINE and Embase up to February 29th, 2024...

OBJECTIVE: We aimed to synthesize the evidence on the construct validity and responsiveness of the EQ-5D and compare them with asthma-specific health-related quality-of-life scales, to guide further research and clinical applications in asthma. METHODS: We searched key databases from inception to 1 June, 2024 and used the COnsensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) method to appraise the evidence. The effect size estimates were aggregated using the inverse variance method to evaluate the relative efficiency of EQ-5D measures against the Asthma Quality of Life Questionnaire (AQLQ) and/or its corresponding preference-based index, Asthma Quality of Life-5 Dimensions (AQL-5D)...

BACKGROUND AND OBJECTIVE: The EQ Health and Wellbeing (EQ-HWB) is a new generic quality-of-life measure for use in evaluating interventions in health, public health and social care. This study aimed to explore proxies' views regarding the appropriateness of the EQ-HWB for measuring residents' quality of life living in residential aged care facilities. METHODS: Qualitative think-aloud and semi-structured interviews were conducted with family members and aged care staff across three facilities in Melbourne, Australia...

INTRODUCTION: Identifying and addressing neurodevelopmental delays in children can be challenging for families and the healthcare system. Delays in accessing services and early interventions are common. The design and delivery of these services, and associated outcomes for children, may be improved if service provision aligns with families' needs and preferences for receiving care. The aim of this study is to identify families' preferences for neurodevelopmental follow-up care for children using an established methodology...

OBJECTIVES: Patient preferences have the potential to influence the development of new treatments for locally advanced/metastatic urothelial carcinoma (la/mUC), and therefore we explored how patients with la/mUC value different attributes of first-line treatments. METHODS: An online preference survey and multidimensional thresholding (MDT) exercise were developed following a targeted literature review and qualitative interviews with physicians, patients with la/mUC, and their caregivers...

INTRODUCTION: Patient-reported outcomes measures (PROMs) are increasingly prevalent in healthcare and used for shared decision-making and healthcare quality evaluation. However, the extent to which patients with varying health literacy levels can complete PROMs is often overlooked. This may lead to biased aggregated data and patients being excluded from studies or other PROM collection initiatives. This cross-sectional study evaluates the comprehensibility of 157 well-known and widely used PROM scales using a comprehensibility checklist...

This paper provides an introduction to statistical analysis of choice data using example data from a simple discrete-choice experiment (DCE). It describes the layout of the analysis dataset, types of variables contained in the dataset, and how to identify response patterns in the data indicating data quality. Model-specification options include linear models with continuous attribute levels and non-linear continuous and categorical attribute levels. Advantages and disadvantages of conditional logit, mixed logit, and latent-class analysis are discussed and illustrated using the example DCE data...

BACKGROUND: Kaizen is a Japanese term for continuous improvement (kai ~ change, zen ~ good). In a kaizen task, a respondent makes sequential choices to improve an object's profile, revealing a preference path. Including kaizen tasks in a discrete choice experiment has the advantage of collecting greater preference evidence than pick-one tasks, such as paired comparisons. OBJECTIVE AND METHODS: So far, three online discrete choice experiments have included kaizen tasks: the 2020 US COVID-19 vaccination (CVP) study, the 2021 UK Children's Surgery Outcome Reporting (CSOR) study, and the 2023 US EQ-5D-Y-3L valuation (Y-3L) study...

BACKGROUND AND OBJECTIVES: Pregnant women living in rural areas considering their preferred place of birth may have to 'trade-off' travel time/distance and other attributes of care (e.g. the full choice of birthplace options is rarely available locally). This study assesses the preferences and trade-offs of recent mothers who live in remote and rural areas of Great Britain. METHODS: An online survey, informed by qualitative research, was administered to women living in rural areas who had given birth in the preceding 3 years...

BACKGROUND: The prevalence of anxiety and depressive symptoms in young people have increased in many countries around the world. Web-based mental health interventions (or W-MHIs) have the potential to reduce anxiety and depression symptoms for young people. Although W-MHIs have become more widely used by young people since the coronavirus disease 2019 (COVID-19) pandemic, real-world engagement in these W-MHIs has remained low compared with engagement reported in research studies. Moreover, there are limited studies examining factors influencing engagement with W-MHIs in the post-COVID-19 pandemic years...

BACKGROUND: The stage of the pandemic significantly affects people's preferences for (the societal impacts of) COVID-19 policies. No discrete choice experiments were conducted when the COVID-19 pandemic was in a transition phase. OBJECTIVES: This is the first study to empirically investigate how citizens weigh the key societal impacts of pandemic policies when the COVID-19 pandemic transitions into an endemic. METHODS: We performed two discrete choice experiments among 2181 Dutch adults that included six attributes: COVID-19 deaths, physical health problems, mental health problems, financial problems, surgery delays and the degree to which individual liberties are restricted...

Treatment satisfaction is a person's rating of his or her treatment experience, including processes and outcomes. It is directly related to treatment adherence, which may be predictive of treatment effectiveness in clinical and real-world research. Consequently, patient-reported outcome (PRO) instruments have been developed to incorporate patient experience throughout various stages of drug development and routine care. PRO instruments enable clinicians and researchers to evaluate and compare treatment satisfaction data in different clinical settings...

BACKGROUND: Individual preferences for treatment options for major depressive disorder can impact therapeutic decision making, adherence, and ultimately outcomes. OBJECTIVES: This systematic review of discrete choice experiments (DCEs) on patient preferences for major depressive disorder treatment assessed the range of DCE applications in major depressive disorder to document patient stakeholder involvement in DCE development and to identify the relative importance of treatment attributes...

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BACKGROUND: The intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers...

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...

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...

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...

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...