Reserve-related activities and MRI metrics in multiple sclerosis patients and...
AbstractBackgroundTo examine whether past and current reserve-related activities make the brain less susceptible to MS pathology (i.e., lesions or disease-related atrophy).MethodsThis secondary...
View ArticleReserve and Reserve-building activities research: key challenges and future...
AbstractBackgroundThe concept of Cognitive Reserve has great appeal and has led to an interesting and important body of research. We believe, however, that it is unnecessarily limited by ‘habits’ of...
View ArticleWhen global rating of change contradicts observed change: Examining appraisal...
AbstractAimsInterpreting change scores is challenging when patients’ global rating of change (GRC) scores contradict their observed change scores. We examine appraisal processes associated with having...
View ArticleAppraisal assessment in patient-reported outcome research: methods for...
AbstractBackgroundRecent work on patient-reported outcomes (PROs) focuses on precise, brief measures, which generally convey little about what an individual’s rating actually means. Individual...
View ArticleToward mindfulness in quality-of-life research: perspectives on how to avoid...
AbstractBackgroundThe field of quality-of-life (QOL) research has matured into a discipline with scientific rigor, sophisticated methods, and guidelines. While this maturation is laudable and needed,...
View ArticleThe Performance Scales disability measure for multiple sclerosis: use and...
AbstractBackgroundIn 1993, the Performance Scales© was created to assess multi-dimensional disability in multiple sclerosis (MS). This tool has been used in a variety of settings and study designs...
View ArticleImpact of an electronic monitoring device and behavioral feedback on...
AbstractPurposeTo report the results of a randomized controlled trial using an electronic monitoring device (EM) plus a motivational interviewing (MI) intervention to enhance adherence to...
View ArticleMeasuring hemophilia caregiver burden: validation of the Hemophilia Caregiver...
AbstractAimsThe purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.MethodsQualitative interviews (n = 22) and a cross-sectional web-based...
View ArticleDistinguishing appraisal and personality influences on quality of life in...
AbstractBackgroundCognitive appraisal of quality of life (QOL) differs across individuals in ways that explain otherwise paradoxical findings, such as similar QOL ratings among individuals in highly...
View ArticleResilience to health challenges is related to different ways of thinking:...
AbstractBackgroundWe sought to understand what distinguishes people who confront health challenges but still manage to thrive. This study investigated whether resilience helps to explain the impact of...
View ArticleAssessing reserve-building pursuits and person characteristics: psychometric...
AbstractAimsA growing body of research suggests that regularly engaging in stimulating activities across multiple domains—physical, cultural, intellectual, communal, and spiritual—builds resilience....
View ArticleDevelopment of a practical outcome measure to account for individual...
AbstractBackgroundThe present study evaluated the distributional and structural characteristics and explanatory power of the 23-item Brief Appraisal Inventory (BAI), a more practical appraisal measure...
View ArticleCorrection to: Impact of an electronic monitoring device and behavioural...
AbstractThe clinicaltrials.gov identifying number for the article titled “Impact of an electronic monitoring device and behavioral feedback on adherence to multiple sclerosis therapies in youth:...
View ArticleThe impact of extended half-life versus conventional factor product on...
AbstractIntroductionExtended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia...
View ArticleLongitudinal validity of the hemophilia caregiver impact measure
AbstractIntroductionThe hemophilia caregiver impact (HCI) measure is a 36-item self-report tool that has documented reliability and validity in a large cross-sectional study, but its longitudinal...
View ArticleAdvancing quality-of-life research by deepening our understanding of response...
AbstractStudies of response-shift phenomena in quality-of-life (QOL) research have grown steadily in the more than two decades of research. As a field, we have been calling a lot of different...
View ArticleDoes response shift impact interpretation of change even among scales...
AbstractBackgroundResponse-shift effects impact the interpretation of change in quality-of-life (QOL) measures developed with classical test theory (CTT) methods. This study evaluated the impact of...
View ArticleLung transplant referral practice patterns: a survey of cystic fibrosis...
AbstractBackgroundMany individuals with cystic fibrosis (CF) die from respiratory failure without referral for lung transplant. Physician practices that may expedite, delay, or preclude referral, are...
View Article
