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There is increased emphasis on incorporating patient perspectives and patient-relevant endpoints in drug development. We developed a conceptual model of the impact of chronic hepatitis B (CHB) on patients’ liv...
Quality of life is an important quality indicator for health and aged care sectors. However, self-reporting of quality of life is not always possible given the relatively high prevalence of cognitive impairmen...
The study aimed to cross-culturally adapt the Patient-Reported Outcomes Measurement Information System Short Form v1.0 - Depression 8a (PROMIS SF v1.0 - Depression 8a) into Thai and evaluate its psychometric p...
Patient satisfaction is a vital metric for assessing healthcare quality and delivering patient-centered care. It can predict service utilization patterns by determining healthcare users’ contentment with their...
Patient-reported outcome measures (PROMs) are increasingly administered in high-income countries to monitor health-related quality of life of breast cancer patients undergoing breast reconstruction. Although l...
This study aimed to compare the psychometric performance of the Cystic Fibrosis Questionnaire–Revised–8 Dimensions (CFQ-R-8D), a new, condition-specific, preference-based measure, with that of generic preferen...
Utilization of electronic patient-reported outcome (ePRO) tools to monitor symptoms in patients undergoing cancer treatment has shown clinical benefits. Tennessee Oncology (TO) implemented an ePRO platform in ...
Goals generated by Goal Attainment Scaling (GAS) can be used as an outcome measure to promote person-centred research and care. There are no training packages which support its use outside of the rehabilitatio...
Most patient-reported outcome (PROs) used in thrombosis research and clinical practice are delivered using technology like online questionnaires. However, only few have undergone formal electronic adaptation f...
In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare sys...
The Consensus Sleep Diary (CSD) is widely used to assess subjective sleep. Psychometric evaluations and focus-groups support its validity and clinical usefulness, but further research into its validity is need...
In the context of Greece, many instruments measuring constructs pertinent to child and adolescent mental health lacked a locally-validated, freely-available version. As part of a nationwide survey, we translat...
The majority of non-metastatic breast cancer patients in sub-Saharan Africa are recommended to have mastectomy. The impact of mastectomy on a predominantly young African patient population requires evaluation....
Presbyopia is an age-related condition that causes a decreased ability to focus on nearby objects. Multifocal contact lenses are commonly used to address this issue. However, there seems to be a notable dissat...
Decisions regarding maintenance therapy in patients with multiple myeloma should be based on both treatment efficacy and health-related quality of life (HRQL) consequences. In the CARFI trial, patients with fi...
Childhood cancer survivors (CCS) are at risk of deficits in their social outcomes, a key aspect of overall health and quality of life. Social outcomes of import are ill-defined leading to potential gaps in res...
The construct validity and interpretation of the Patient-Reported Outcome Measurement Information System (PROMIS®) Physical Function short form 20a (PF20a) questionnaire were evaluated for patients with late-onse...
Individual appraisals of personal well-being consider a spectrum of constructs including the reflections on the degree to which one’s life is ultimately secure, meaningful, or valued in the context of dynamic ...
Cardiovascular diseases (CVD) represent the world’s leading cause of death. Health-related quality of life (HRQoL) is a widely applied concept of patients’ perceived health and is directly linked to CVD morbid...
The widespread availability of antiretroviral therapy has led to improvements in life expectancy and thus an increase in the number of people living with HIV/AIDS (PLWHA) worldwide. However, a similar increase...
Interpretation thresholds for patient-reported outcome (PRO) scores are of crucial importance, particularly when interpreting treatment benefit. This study was designed to determine the within-patient meaningf...
No specific measures exist to assess patient-reported symptoms experienced by individuals with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) or mantle cell lymphoma (MCL). This study was ...
Established health-related quality of life scores do not consider both subjective and objective indices of health. We propose the subjective and objective quality of life score (SOQOL) for the comprehensive as...
The Weight-Specific Adolescent Instrument for Economic Evaluation (WAItE) is a physical weight-specific patient reported outcome measure for use in adolescence. The purpose of this study was to use the Time Tr...
The Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items (global-10) yield physical and mental health scale scores and the PROMIS-Preference (PROPr) scoring system estimat...
Patient-reported outcomes (PROs) play a crucial role in assessing rheumatic diseases, o...
The FitMáx© was developed as a questionnaire-based instrument to estimate Cardiorespiratory Fitness (CRF) expressed as oxygen uptake at peak exercise (VO2peak). Test–retest reliability is a clinometric measuremen...
Tardive dyskinesia (TD), a movement disorder in which patients experience abnormal involuntary movements, can have profound negative impacts on physical, cognitive, and psychosocial functioning. The Abnormal I...
While there is increasing evidence on the benefits of PROMs in cancer care, the extent of routine collection and use of PROMs in clinical cancer practice across Australia and New Zealand (ANZ) is unknown. This...
Women with Fibromyalgia Syndrome (FMS) can benefit form adequate social support to fight the consequences of their illness, but the extent to which this is available to those with low incomes who live in depre...
To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29...
Understanding patients’ perspectives regarding drug tolerability, in addition to effectiveness, provides a complete picture of the patient experience and supports more informed therapeutic decision-making. The...
More than 60% of patients with atrial fibrillation (AF) have a significant health-related quality of life (HRQoL) impairment. HRQoL, a patient-reported outcome (PRO), has become an important endpoint to assess...
The progression of Duchenne muscular dystrophy (DMD) is characterized by loss of ambulation, respiratory insufficiency, cardiomyopathy, and early mortality. DMD profoundly impacts health-related quality-of-lif...
Patient-reported outcomes (PROs) collection and utilization improves patient-provider communication, symptom reporting, and patient satisfaction. Despite their significance, the science and utility of PROs are...
Patient-reported outcome (PRO) measures provide valuable evidence in clinical trials; however, poor compliance with PRO measures is a notable and long-standing problem, resulting in missing data that potential...
Duchenne muscular dystrophy (DMD) is a rare, severe, fatal neuromuscular disease characterized by progressive atrophy and muscle weakness, resulting in loss of ambulation, decreased upper body function, and im...
In January 2021, 999 COVID-19 positive adults in the US enrolled in an online, direct-to-patient registry to describe daily symptom severity and progression over 28 days. The most commonly reported and persist...
Case-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is po...
The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare prof...
To translate the eight PROMIS® GastrointestinaI Symptom Scales into Dutch–Flemish and to evaluate their psychometric properties.
To assess quality of life and unmet needs after stroke, patient-reported outcome measures (PROMs) have gained increasing attention. However, patients’ perspectives on assessing PROMs remain unclear, potentiall...
A common method of pain assessment is the numerical rating scale, where patients are asked to rate their pain on a scale from 0 to 10, where 0 is “no pain” and 10 is “pain as bad as you can imagine”. We hypoth...
Tardive dyskinesia (TD) has a multidimensional impact on patients with TD and, as importantly, their caregivers. An online survey was developed and administered to assess patient and caregiver burden of TD. Su...
The Correction to this article has been published in Journal of Patient-Reported Outcomes 2024 8:51
PROs are valuable tools in clinical care to capture patients’ perspectives of their health, symptoms and quality of life. However the COVID-19 pandemic has had profound impacts on all aspects of life, in parti...
Eosinophilic esophagitis (EoE) has a detrimental effect on health-related quality of life (HRQOL). The Eosinophilic Esophagitis Impact Questionnaire (EoE-IQ) is a novel patient-reported outcome (PRO) measure a...
Erythropoietic protoporphyria is a rare, inherited disorder presenting in early childhood with severe, painful phototoxicity. EPP has significant impacts on health-related quality of life, though there is vari...
Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child’s life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children wit...
There is a clear need to harmonize outcome measurement. Some authors propose to express scores as T scores to facilitate interpretation of PROM results in clinical practice. While this is a step in the right d...
This proof-of-concept retrospective case study investigated whether patient-reported outcomes (PRO) instruments, designed to capture symptomatic adverse event data, could identity a known exposure–response (ER...
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