Quality of Life Research

PURPOSE: Alopecia areata (AA) is an autoimmune-mediated inflammatory dermatological disease characterised by non-scarring hair loss affecting the scalp and sometimes other hair-bearing sites. This study aimed to elicit health state utility values (HSUVs) from the UK general population for AA using time trade off (TTO) interviews. METHODS: Vignette descriptions of health states defined by the extent of hair loss were developed (as well as one describing caregiver burden)...

PURPOSE: Many factors have been associated with health-related quality of life (HRQOL), and researchers often have tried to rank these contributing factors. Variable importance quantifies the net independent contribution of each individual predictor in a set of predictors to the prediction accuracy of the outcome. This study assessed relative importance (RI) of selected contributing factors to respondents' physically unhealthy days (PUD), mentally unhealthy days (MUD), activity limitation days (ALD), and EuroQol EQ-5D index derived from the Healthy Days measures (dEQ-5D)...

PURPOSE: Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy measures completed by staff on behalf of older adults resident in care homes, by comparison to the ASCOT-SCT4, the measure of social care-related quality of life (SCRQoL) from which the ASCOT-Proxy was developed. METHODS: EFA was conducted on the ASCOT-SCT4 and the two ASCOT-Proxy measures (Proxy-Proxy, Proxy-Resident), to determine if they retained the single factor of the original ASCOT-SCT4 measure found in samples of older community-dwelling adults...

PURPOSE: Sleep and stress show an interdependent relationship in physiology, and both are known risk factors for relapse in substance use disorder (SUD) recovery. However, sleep and stress are often investigated independently in addiction research. In this exploratory study, the associations of sleep quality and perceived stress with delay discounting (DD), effort discounting (ED), and quality of life (QOL) were examined concomitantly to determine their role in addiction recovery. DD has been proposed as a prognostic indicator of SUD treatment response, ED is hypothesized to be relevant to the effort to overcome addiction, and QOL is an important component in addiction recovery...

BACKGROUND: Hemorrhoid disease (HD) affects 10 million people in the US at any given time, and 50% of the US population will develop symptomatic hemorrhoids during their lifetime. Approximately 60% of people with hemorrhoids experience symptoms. Despite its prevalence and impact on quality of life, the existing patient-reported outcome measures of HD have not been validated using standard psychometric methods. The present study thus aimed to develop the Hemorrhoid Disease Symptom Impact Measure™ (HDSIM™) assessment system, a patient-reported measure of HD symptoms and impact for use in HD clinical research...

PURPOSE: This study aimed to provide a better understanding of the patient-perceived effects of France's first COVID-19-related lockdown on the quality of life (QoL) of women affected by cancer, and to test an ad hoc measurement scale for evaluating quasi-individualized QoL. QoL was measured for both during (i.e., current) and before (i.e., retrospectively) the lockdown. Respondents were women registered on the research platform Seintinelles. METHODS: A tool for measuring quasi-individualized QoL was adapted from the SeiQol-DW and PGI...

PURPOSE: Measuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understanding the effect of interventions such as genomic sequencing (GS). The Pediatric Quality of Life Inventory (PedsQL) is a widely used generic measure of HRQoL in pediatric patients, but its psychometric properties have not yet been evaluated in children undergoing diagnostic GS. METHODS: In this cross-sectional study, we surveyed caregivers at the time of their child's enrollment into GS research studies as part of the Clinical Sequencing Evidence Generating Research (CSER) consortium...

PURPOSE: Several studies have examined the relationship between sleep quality and health-related quality of life (HRQOL). However, there are a lack of generalizable data on this association in Singapore. Our study aimed to (1) investigate the association between sleep quality and HRQOL and (2) examine whether age moderated these associations. METHODS: Data were obtained from nationwide Singapore Mental Health Study 2016 (n = 6126, response rate = 69...

PURPOSE: Frailty in HIV is extensively explored in epidemiological and clinical studies; it is infrequently assessed as an outcome in routine care. The focus on health-related quality of life (HRQL) measures in HIV presents a unique opportunity to understand frailty at a larger scale. The objective was to identify the extent to which generic and HIV-related HRQL measures capture information relevant to frailty. METHODS: A systematic mapping review using directed and summative content analyses was conducted...

PURPOSE: Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. METHODS: Longitudinal data, with three measurement time points (1 month and 3 months after SCI onset, and at discharge from inpatient rehabilitation) from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study...

No abstract text is available yet for this article.

This paper presents an empirical challenge to the assumption that an item-response theory analysis always yields a better measure of a clinical construct. We summarize results from two measurement development studies that showed that such an analysis lost important content reflecting the conceptual model ("conceptual validity"). The cost of parsimony may thus be too high. Conceptual models that form the foundation of QOL measurement reflect the patient's experience. This experience may include concepts and items that are psychometrically "redundant" but capture distinct features of the concept...

PURPOSE: To evaluate the health-related quality of life and associated risk factors for Multiple Osteochondromas patients. METHODS: A cross-sectional, observational study was conducted from May to December 2022 during the routine visit to the referral center for rare skeletal disorders. All patients with Multiple Osteochondromas aged ≥ 3 years were included. EuroQol 5-dimension questionnaires, and demographic, clinical, and surgical history data were collected...

PURPOSE: To develop and test the measurement properties of the HD-DT-C, a new tool designed to facilitate the screening of psychological distress and its sources in family caregivers of adults on hemodialysis. METHODS: The present investigation was carried out in three phases: Phase 1 focused on the process of developing and exploring the content validity and clinical utility of the HD-DT-C using a mixed-methods approach and feedback panels; Phase 2, where the psychometric properties of this new tool were tested in a cross-sectional study (n = 106 caregivers); and Phase 3, where the European Portuguese version of the HD-DT-C was translated and culturally adapted into American English using a forward-backward translation procedure, followed by an expert panel review...

No abstract text is available yet for this article.

PURPOSE: In this study, we evaluated readability and understandability of nine French-language Patient-Reported Outcome Measures (PROMs) that are currently used in a contemporary longitudinal cohort of breast cancer survivors as part of an effort to improve equity in cancer care and research. METHODS: Readability of PROMs was assessed using the Flesh Reading Ease Score (FRES), the Gunning's Fog Index (FOG), and the FRY graphics. Readability was considered ideal if mean score ≤ 6th-grade level and acceptable if between 6th and 8th grade...

OBJECTIVE: Valuing child health is critical to assessing the value of healthcare interventions for children. However, there remain important methodological and normative issues. This qualitative study aimed to understand the views of Canadian stakeholders on these issues. METHODS: Stakeholders from health technology assessment (HTA) agencies, pharmaceutical industry representatives, healthcare providers, and academic researchers/scholars were invited to attend an online interview...

PURPOSE: To identify symptoms and their impacts on daily functioning and health-related quality of life (HRQoL) experienced by adult patients with ulcerative colitis (UC) and evaluate patient-reported outcome (PRO) measures for UC clinical studies. METHODS: A conceptual model of symptoms and impacts of UC were developed from a literature review. PRO measures were identified from the literature, clinical trials databases, health technology assessment submissions, and regulatory label claims, and were selected for conceptual analysis based on disease specificity and use across information sources...

PURPOSE: Statistical power for response shift detection with structural equation modeling (SEM) is currently underreported. The present paper addresses this issue by providing worked-out examples and syntaxes of power calculations relevant for the statistical tests associated with the SEM approach for response shift detection. METHODS: Power calculations and related sample-size requirements are illustrated for two modelling goals: (1) to detect misspecification in the measurement model, and (2) to detect response shift...

OBJECTIVE: To estimate patient acceptable symptom state (PASS) and treatment failure (TF) threshold values for Work Productivity and Activity Impairment (WPAI) measure and EQ-5D-5L among people with hip or knee osteoarthritis (OA) 3 and 12 months following participation in a digital self-management intervention (Joint Academy®). METHODS: Among the participants, we computed work and activity impairments scores (both 0-100, with a higher value reflecting higher impairment) and the Swedish hypothetical- (range: - 0...