Issues in the Design of Discrete Choice Experiments
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 16, 2018 Category: International Medicine & Public Health Source Type: research

Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis
ConclusionsPatients thought PPI could be valuable to consider in regulatory decisions. It is essential for patients to be well-informed when asked for their preferences. Research on information materials to inform patients in preference studies is needed to increase the value of PPI in regulatory decision making. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 15, 2018 Category: International Medicine & Public Health Source Type: research

Healthcare Experience and their Relationship with Demographic, Disease and Healthcare-Related Variables: A Cross-Sectional Survey of Patients with Chronic Diseases Using the IEXPAC Scale
AbstractBackgroundPatient experience is acknowledged as a principal aspect of quality healthcare delivery, and it has implications with regard to outcomes.ObjectivesOur objective was to evaluate the healthcare experience of patients with chronic diseases to identify patient-perceived healthcare gaps and to assess the influence of demographic and healthcare-related variables on patient experiences.MethodsA cross-sectional survey was delivered to adult patients with chronic diseases: diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, inflammatory bowel disease (IBD) or rheumatic diseases. Patient experienc...
Source: The Patient - Patient-Centered Outcomes Research - November 15, 2018 Category: International Medicine & Public Health Source Type: research

Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - November 3, 2018 Category: International Medicine & Public Health Source Type: research

Implementing a Health Confidence Tool at Time of Discharge
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 30, 2018 Category: International Medicine & Public Health Source Type: research

Validity of the Patient Experiences and Satisfaction with Medications (PESaM) Questionnaire
ConclusionsThe PESaM questionnaire is a unique patient-reported outcome measure evaluating patient experiences and satisfaction with medications. It has been developed in conjunction with patients, ensuring coverage of domains and issues relevant from the patient ’s perspective. This study has shown promising validity of the generic module of the PESaM questionnaire. Further research is recommended to assess reliability in greater detail as well as the responsiveness of the measure.Trial registrationThe study is registered in The Netherlands National Trial Register (Trial Code 5860). (Source: The Patient - Patient-Ce...
Source: The Patient - Patient-Centered Outcomes Research - October 26, 2018 Category: International Medicine & Public Health Source Type: research

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
ConclusionBurdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child –family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing c ountries, and a focus on nonmalignant conditions. (Source: The Patient - Patient-Ce...
Source: The Patient - Patient-Centered Outcomes Research - October 26, 2018 Category: International Medicine & Public Health Source Type: research

Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment
ConclusionsIncluding the target respondent group in all stages of DCE development ensured the final DCE survey was valid and acceptable. DCE methods appear to be a useful tool for exploring joint decision making alongside conventional preference elicitation. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 26, 2018 Category: International Medicine & Public Health Source Type: research

Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement
ConclusionsThis study illuminates a path for a formal process of stakeholder engagement and evaluation in educational resource development centered on the SRH care needs of AYA women with CF. Similar systematic, planned processes could be extended to other populations and aspects of healthcare. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 26, 2018 Category: International Medicine & Public Health Source Type: research

Acknowledgement to Referees
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 24, 2018 Category: International Medicine & Public Health Source Type: research

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies
The objective of this systematic review was to synthesize potential antecedents and consequences of parent empowerment in healthcare settings.Eligibility CriteriaThe inclusion criteria were (1) studies with results about parent empowerment in the context of children ’s healthcare or healthcare providers; and (2) qualitative studies, observational studies, and systematic reviews of such studies.Information SourcesWe searched the databases of PubMed, Web of Science, and Google Scholar (2006 –2017) and reference lists.Included StudiesForty-four articles met the inclusion criteria.Synthesis of ResultsWe identified ...
Source: The Patient - Patient-Centered Outcomes Research - October 17, 2018 Category: International Medicine & Public Health Source Type: research

Impact of Carotid Artery Stenosis on Quality of Life: A Systematic Review
ConclusionThe findings from the review identified the important themes that affect patients with carotid stenosis disease. The current generic and disease-specific PROMs do not cover all themes that impact the HRQoL of patients suffering with this disease. The proposed themes can be used to develop a new disease-specific PROM to measure HRQoL. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 17, 2018 Category: International Medicine & Public Health Source Type: research

A Scoping Review of Key Health Items in Self-Report Instruments Used Among Solid Organ Transplant Recipients
AbstractThe overall aim of this scoping review of the literature is twofold: (1) to provide an overview of all instruments that have been used to assess health-related quality of life (HRQoL) after solid organ transplantation and (2) to provide a list of health items they include to support future studies on the development of a new-generation HRQoL instrument. All studies that administered any form of HRQoL instrument to post-transplant solid organ recipients were identified in a comprehensive search of PubMed (MEDLINE), Embase, and Web of Science, with a cut-off date of May 2018. The search used various combinations of t...
Source: The Patient - Patient-Centered Outcomes Research - October 16, 2018 Category: International Medicine & Public Health Source Type: research

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia
ConclusionsThe resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 12, 2018 Category: International Medicine & Public Health Source Type: research

Patient-Consent Disconnects in Clinical Research
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs
ConclusionsThe findings show that utilising a participatory approach to the development of PRMs for DAA HCV treatment with PWID not only provides a way to measure experiences and outcomes of treatment from the patient perspective, but also provides a means for highly marginalised patient groups to have a say in and negotiate their care in ways that might not otherwise be possible. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

The Parker Model: Applying a Qualitative Three-Step Approach to Optimally Utilize Input from Stakeholders When Introducing New Device Technologies in the Management of Chronic Rheumatic Diseases
ConclusionsThis study is the first to apply a composite, qualitative research model when introducing an e-Device for the treatment and management of rheumatic disease. Results show that input from patients and other stakeholders using the Parker Model can add value to the development and implementation of an e-Device. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Patient-Reported Symptoms Over 48  Weeks Among Participants in Randomized, Double-Blind, Phase III Non-inferiority Trials of Adults with HIV on Co-formulated Bictegravir, Emtricitabine, and Tenofovir Alafenamide versus Co-formulated Abacavir, Dolutegravir, and Lamivudine
AbstractBackgroundIntegrase strand transfer inhibitors (INSTIs) are recommended for first-line antiretroviral therapy in combination with two nucleos(t)ide reverse transcriptase inhibitors. Co-formulated bictegravir, emtricitabine, and tenofovir alafenamide (B/F/TAF), a novel, INSTI-based regimen, is currently approved in the US and EU for the treatment of HIV-1 infection and recommended as first-line treatment in current guidelines. In our current analysis, we aimed to determine changes in patient-reported symptoms over time among HIV-1-infected adults who initiated or switched to B/F/TAF versus another INSTI-based regime...
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Accounting for Scale Heterogeneity in Healthcare-Related Discrete Choice Experiments when Comparing Stated Preferences: A Systematic Review
ConclusionsScale heterogeneity is a prevalent issue in healthcare DCEs. Despite this, few published DCEs have discussed such issues, and fewer still have used formal methods to identify and account for the impact of scale heterogeneity. The use of formal methods to test for scale heterogeneity should be used, otherwise the results of DCEs potentially risk producing biased and potentially misleading conclusions regarding preferences for aspects of healthcare. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Themes that Determine Quality of Life in Patients with Peripheral Arterial Disease: A Systematic Review
DiscussionThe findings from the review identified the important domains that affect patients living with peripheral arterial disease. None of the current generic and disease-specific patient-reported outcome measures provide a comprehensive measure for all themes that impact the daily living of patients with peripheral arterial disease. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations
ConclusionsIn this study population of acute intermittent porphyria with frequent attacks, most patients had symptoms during and between attacks. In these patients, acute intermittent porphyria appears to have acute exacerbations as well as chronic day-to-day manifestations, and is not just intermittent as its name implies. As a result, patients reported limitations in their ability to function across multiple domains of their lives on a regular basis and not just during acute attacks. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Patient Preferences for Managing Insomnia: A Discrete Choice Experiment
AbstractBackgroundDespite the rapid development of effective treatments, both pharmacological and non-pharmacological, insomnia management remains suboptimal at the practice interface. Patient preferences play a critical role in influencing treatment outcomes. However, there is currently a mismatch between patient preferences and clinician recommendations, partly perpetuated by a limited understanding of the patients ’ decision-making process.ObjectivesThe aim of our study was to empirically quantify patient preferences for treatment attributes common to both pharmacological and non-pharmacological insomnia treatment...
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States
The objective of this study was to evaluate how chorea impacts HRQoL and overall functioning among HD patients participating on the PatientsLikeMe website (www.PatientsLikeMe.com).MethodsA survey was provided to HD participants and/or their caregivers via PatientsLikeMe (9 February 2017 –22 March 2017), comprising multiple-choice and open-ended questions designed to assess how chorea impacts HRQoL and overall functioning, and the importance of treating chorea. The HDQLIFE measurement system was used to evaluate patient-reported outcomes of chorea and compare Anxiety and Stigma sc ores in participants with high chorea...
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Patient-Consent Disconnects in Clinical Research
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Symposium Title: Preference Evidence for Regulatory Decisions
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life
ConclusionDespite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Key Issues and Potential Solutions for Understanding Healthcare Preference Heterogeneity Free from Patient-Level Scale Confounds
(Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs
ConclusionsThe findings show that utilising a participatory approach to the development of PRMs for DAA HCV treatment with PWID not only provides a way to measure experiences and outcomes of treatment from the patient perspective, but also provides a means for highly marginalised patient groups to have a say in and negotiate their care in ways that might not otherwise be possible. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - October 1, 2018 Category: International Medicine & Public Health Source Type: research

How Do Members of the Duchenne and Becker Muscular Dystrophy Community Perceive a Discrete-Choice Experiment Incorporating Uncertain Treatment Benefit? An Application of Research as an Event
AbstractBackgroundBest –worst scaling methods have been used in several Duchenne and Becker muscular dystrophy (DBMD) studies to quantify patient and caregiver priorities and preferences and promote patient-focused drug development (PFDD). We sought to assess the extent to which different members of the DBMD community w ould accept a discrete-choice experiment (DCE) that incorporates uncertainty regarding individual-level benefit.MethodsA community advisory board encouraged the development and testing of a DCE to further examine treatment preferences in DBMD and to facilitate the inclusion of a policy-relevant uncert...
Source: The Patient - Patient-Centered Outcomes Research - September 27, 2018 Category: International Medicine & Public Health Source Type: research

General Population vs. Patient Preferences in Anticoagulant Therapy: A Discrete Choice Experiment
ConclusionsThe general population and patients with cardiovascular disease had slightly different preferences for treatment outcomes. The differences can potentially influence estimated benefits and risks and patient-centered treatment decisions. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - September 21, 2018 Category: International Medicine & Public Health Source Type: research

Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties
ConclusionFour tools demonstrated some promise, but no single tool was consistent across all psychometric properties assessed. All tools identified would benefit from further psychometric testing. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 24, 2018 Category: International Medicine & Public Health Source Type: research

Treatment Decisions for Advanced Non-Squamous Non-Small Cell Lung Cancer: Patient and Physician Perspectives on Maintenance Therapy
ConclusionThis study identified challenges and motivators influencing advanced NSCLC patients ’ decisions to accept or refuse therapy, as well as patient and disease characteristics associated with physician’s treatment recommendations for MT. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 21, 2018 Category: International Medicine & Public Health Source Type: research

“I Was Trying to Do the Maths”: Exploring the Impact of Risk Communication in Discrete Choice Experiments
ConclusionMost women completed the DCE in line with economic theory; however, violations were identified. Women appeared to visualise risk whether they received icon arrays or percentages only. Providing clear instructions and graphics to aid interpretation of risk and qualitative piloting to verify understanding is recommended. Further investigation is required to determine if the process of verbalising thoughts changes the behaviour of respondents. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 11, 2018 Category: International Medicine & Public Health Source Type: research

Including Opt-Out Options in Discrete Choice Experiments: Issues to Consider
We present our code written in the R statistical language so that others can explore these issues in their own data. In this practical guideline, we generate synthetic data on medication choice and use Monte Carlo simulation. We consider three different definitions for the opt-out alternative and four candidate models for each definition. We apply a frequentist-based multimodel inference approach and use performance indicators to assess the relative suitability of each candidate model in a range of settings. We show that misspecifying the opt-out effect has repercussions for marginal willingness to pay estimation and the f...
Source: The Patient - Patient-Centered Outcomes Research - August 2, 2018 Category: International Medicine & Public Health Source Type: research

Living with Merkel Cell Carcinoma (MCC): Development of a Conceptual Model of MCC Based on Patient Experiences
ConclusionsMCC disease was not perceived by the interviewed patients to result in severe functional limitations or to severely impact everyday activities, but was associated with substantial negative psychological impact. In contrast, chemotherapy and radiotherapy for MCC are highly debilitating and disrupt patients ’ lives.ClinicalTrials.gov identifierNCT02155647. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - August 1, 2018 Category: International Medicine & Public Health Source Type: research

Prior Authorization as a Potential Support of Patient-Centered Care
AbstractWe discuss the role of prior authorization (PA) in supporting patient-centered care (PCC) by directing health system resources and thus the ability to better meet the needs of individual patients. We begin with an account of PCC as a standard that should be aimed for in patient care. In order to achieve widespread PCC, appropriate resource management is essential in a healthcare system. This brings us to PA, and we present an idealized view of PA in order to argue how at its best, it can contribute to the provision of PCC. PA is a means of cost saving and as such it has mixed success. The example of the US demonstr...
Source: The Patient - Patient-Centered Outcomes Research - August 1, 2018 Category: International Medicine & Public Health Source Type: research

Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments
AbstractHealth 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. As the timeframe for HTAs has reduced, research to produce patient-based evidence has been r...
Source: The Patient - Patient-Centered Outcomes Research - July 27, 2018 Category: International Medicine & Public Health Source Type: research

A Conceptual Model of Angelman Syndrome and Review of Relevant Clinical Outcomes Assessments (COAs)
ConclusionFuture work should consider the adaptation of existing COAs and the development of a novel AS-specific instrument for use in clinical research to ensure outcomes important to this patient population are captured. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 10, 2018 Category: International Medicine & Public Health Source Type: research

Understanding ‘Good Health care’ from the Patient’s Perspective: Development of a Conceptual Model Using Group Concept Mapping
ConclusionsThis comprehensive qualitative and quantitative investigation is an important first step in developing patient-reported outcome performance measures that capture the aspects of health care that are most important and relevant for patients. Limitations and future directions are discussed. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - July 2, 2018 Category: International Medicine & Public Health Source Type: research

Oh, the Places We ’ll Go: Patient-Reported Outcomes and Electronic Health Records
AbstractThe 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...
Source: The Patient - Patient-Centered Outcomes Research - July 2, 2018 Category: International Medicine & Public Health Source Type: research

Patient-Reported Symptoms Over 48  Weeks Among Participants in Randomized, Double-Blind, Phase III Non-inferiority Trials of Adults with HIV on Co-formulated Bictegravir, Emtricitabine, and Tenofovir Alafenamide versus Co-formulated Abacavir, Dolutegravir, and Lamivudine
AbstractBackgroundIntegrase strand transfer inhibitors (INSTIs) are recommended for first-line antiretroviral therapy in combination with two nucleos(t)ide reverse transcriptase inhibitors. Co-formulated bictegravir, emtricitabine, and tenofovir alafenamide (B/F/TAF), a novel, INSTI-based regimen, is currently approved in the US and EU for the treatment of HIV-1 infection and recommended as first-line treatment in current guidelines. In our current analysis, we aimed to determine changes in patient-reported symptoms over time among HIV-1-infected adults who initiated or switched to B/F/TAF versus another INSTI-based regime...
Source: The Patient - Patient-Centered Outcomes Research - June 29, 2018 Category: International Medicine & Public Health Source Type: research

Patient Perspective on Acute Intermittent Porphyria with Frequent Attacks: A Disease with Intermittent and Chronic Manifestations
ConclusionsIn this study population of acute intermittent porphyria with frequent attacks, most patients had symptoms during and between attacks. In these patients, acute intermittent porphyria appears to have acute exacerbations as well as chronic day-to-day manifestations, and is not just intermittent as its name implies. As a result, patients reported limitations in their ability to function across multiple domains of their lives on a regular basis and not just during acute attacks. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 19, 2018 Category: International Medicine & Public Health Source Type: research

The Parker Model: Applying a Qualitative Three-Step Approach to Optimally Utilize Input from Stakeholders When Introducing New Device Technologies in the Management of Chronic Rheumatic Diseases
ConclusionsThis study is the first to apply a composite, qualitative research model when introducing an e-Device for the treatment and management of rheumatic disease. Results show that input from patients and other stakeholders using the Parker Model can add value to the development and implementation of an e-Device. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 11, 2018 Category: International Medicine & Public Health Source Type: research

Video or In-Clinic Consultation? Selection of Attributes as Preparation for a Discrete Choice Experiment Among Key Stakeholders
ConclusionsThis qualitative study identified attributes and levels for a DCE quantitative stage among three key stakeholder groups. It adds to the literature of examples of developing DCE attributes, and to literature about the stakeholder benefits in the area of telemedicine in healthcare. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - June 9, 2018 Category: International Medicine & Public Health Source Type: research