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Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures
Patient experiences in ulcerative colitis: conceptual model and review of patient-reported outcome measures
To identify symptoms and their impacts on daily functioning and health-related quality of life (HRQoL) experienced by adul...
An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort
An effort to improve the collection of patient-generated data: readability and understandability of patient-reported outcomes measures in a survivorship cohort
In this study, we evaluated readability and understandability of nine French-language Patient-Reported Outcome Me...
The Hemodialysis Distress Thermometer for Caregivers (HD-DT-C): development and testing of the psychometric properties of a new tool for screening psychological distress among family caregivers of adults on hemodialysis
The Hemodialysis Distress Thermometer for Caregivers (HD-DT-C): development and testing of the psychometric properties of a new tool for screening psychological distress among family caregivers of adults on hemodialysis
To develop and test the measurement properties of the HD-DT-C, a new tool designed to facilitate the screening of psycholo...
Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study
Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study
To evaluate the health-related quality of life and associated risk factors for Multiple Osteochondromas patients. A cross-...
Reciprocal association between pain and quality of life after newly acquired spinal cord injury
Reciprocal association between pain and quality of life after newly acquired spinal cord injury
Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first stu...
When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research
When better is the enemy of good: two cautionary tales of conceptual validity versus parsimony in clinical psychometric research
This paper presents an empirical challenge to the assumption that an item-response theory analysis always yields a better ...
Health-related quality of life measures provide information on the contributors, components, and consequences of frailty in HIV: a systematic mapping review
Health-related quality of life measures provide information on the contributors, components, and consequences of frailty in HIV: a systematic mapping review
Frailty in HIV is extensively explored in epidemiological and clinical studies; it is infrequently assessed as an outcome ...
Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions
Measuring health-related quality of life in children with suspected genetic conditions: validation of the PedsQL proxy-report versions
Measuring health-related quality of life (HRQoL) of children with suspected genetic conditions is important for understand...
Development and validation of the HDSIM™ assessment system: a measure of hemorrhoid disease symptom impact
Development and validation of the HDSIM™ assessment system: a measure of hemorrhoid disease symptom impact
Hemorrhoid disease (HD) affects 10 million people in the US at any given time, and 50% of the US population will develop s...
Exploratory factor analysis and Rasch analysis to assess the structural validity of the Adult Social Care Outcomes Toolkit Proxy version (ASCOT-Proxy) completed by care home staff
Exploratory factor analysis and Rasch analysis to assess the structural validity of the Adult Social Care Outcomes Toolkit Proxy version (ASCOT-Proxy) completed by care home staff
Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy meas...
Relative importance of selected predictors of health-related quality-of-life (HRQOL) among U.S. adults
Relative importance of selected predictors of health-related quality-of-life (HRQOL) among U.S. adults
Many factors have been associated with health-related quality of life (HRQOL), and researchers often have tried to rank th...
Translation, cultural adaptation, and validation of the Chinese standardized outcomes in nephrology–hemodialysis fatigue (C-SONG–HD fatigue) scale: a study of Chinese patients undergoing hemodialysis
Translation, cultural adaptation, and validation of the Chinese standardized outcomes in nephrology–hemodialysis fatigue (C-SONG–HD fatigue) scale: a study of Chinese patients undergoing hemodialysis
This study aimed to translate and culturally adapt the standardized outcomes in nephrology–hemodialysis fatigue (SON...
What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy
What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy
There are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs),...
Health-related quality of life of people with heart failure in low- and middle-income countries: a systematic review and meta-analysis
Health-related quality of life of people with heart failure in low- and middle-income countries: a systematic review and meta-analysis
Heart failure is a global health concern and associated with poor health-related quality of life and increased mortality. ...
Using parameter perturbation to facilitate transparency in measure development
Using parameter perturbation to facilitate transparency in measure development
This work was supported by Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, Natio...
Influence of body mass index on health complains and life satisfaction
Influence of body mass index on health complains and life satisfaction
This research work investigates the influence of children’s weight status on well-being and school context in a samp...
Using a multi-stakeholder co-design process to develop a health service organisation-wide patient reported outcome measure collection system
Using a multi-stakeholder co-design process to develop a health service organisation-wide patient reported outcome measure collection system
Limited examples exist of successful Patient Reported Outcome Measure (PROM) implementation across an entire healthcare or...
Patient quality of life and caregiver experiences in ovarian cancer: How are they related?
Patient quality of life and caregiver experiences in ovarian cancer: How are they related?
Patients with ovarian cancer and their spousal caregivers report similarities in health-related quality of life (HRQoL) an...
Health outcomes before and during the COVID-19 pandemic in caregivers of service members and veterans with traumatic brain injury
Health outcomes before and during the COVID-19 pandemic in caregivers of service members and veterans with traumatic brain injury
To examine change in health-related quality of life (HRQOL) during the COVID-19 pandemic in caregivers of service members/...
Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey
Supportive care needs in Australian melanoma patients and caregivers: results from a quantitative cross-sectional survey
This study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the...
The early years: hirschsprung disease and health-related quality of life
The early years: hirschsprung disease and health-related quality of life
Chronic diseases are notorious in the way that they interfere with many aspects of a child’s development, and this h...
The Patient Generated Index (PGI) as an early-warning system for predicting brain health challenges: a prospective cohort study for people living with Human Immunodeficiency Virus (HIV)
The Patient Generated Index (PGI) as an early-warning system for predicting brain health challenges: a prospective cohort study for people living with Human Immunodeficiency Virus (HIV)
In research people are often asked to fill out questionnaires about their health and functioning and some of the questions...
Estimating the disutility of relapse in relapsing–remitting and secondary progressive multiple sclerosis using the EQ-5D-5L, AQoL-8D, EQ-5D-5L-psychosocial, and SF-6D: implications for health economic evaluation models
Estimating the disutility of relapse in relapsing–remitting and secondary progressive multiple sclerosis using the EQ-5D-5L, AQoL-8D, EQ-5D-5L-psychosocial, and SF-6D: implications for health economic evaluation models
Relapses are an important clinical feature of multiple sclerosis (MS) that result in temporary negative changes in quality...
Development and initial psychometric evaluation of a COVID-related psychosocial experiences questionnaire for cancer survivors
Development and initial psychometric evaluation of a COVID-related psychosocial experiences questionnaire for cancer survivors
Cancer survivors are at elevated risk of psychological problems related to COVID-19, yet no published measure adequately a...
Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life
Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life
Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus ...
Estimating meaningful change for The Impact of Weight on Self-Perception (IW-SP) questionnaire among people with type 2 diabetes
Estimating meaningful change for The Impact of Weight on Self-Perception (IW-SP) questionnaire among people with type 2 diabetes
The Impact of Weight on Self-perception Questionnaire (IW-SP) is a three-item patient-reported outcome measure (PROM) inst...
Association of body mass index from childhood to mid-adulthood with health-related quality of life in mid-adulthood
Association of body mass index from childhood to mid-adulthood with health-related quality of life in mid-adulthood
Most studies regarding the association of obesity with health-related quality of life (HRQoL) have assessed obesity at onl...
A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults
A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults
Self-Reporting using traditional text-based Quality-of-Life (QoL) instruments can be difficult for people living with sens...
Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology
Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology
Increasingly there are calls to routinely assess the health-related quality of life (HRQoL) of older people receiving aged...
Translation and validation of a Chinese version of the pancreatitis quality of life instrument (PANQOLI) in patients with chronic pancreatitis
Translation and validation of a Chinese version of the pancreatitis quality of life instrument (PANQOLI) in patients with chronic pancreatitis
Chronic pancreatitis (CP) is a chronic fibroinflammatory pancreatic disease that severely impacts patients’ quality ...
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