Partners Multiple Sclerosis Center, Brigham and Women's Hospital, Boston, MA, USA/ Department of Neurology, Harvard Medical School, Boston, MA, USA/ Biostatistics Center, Massachusetts General Hospital, Boston, MA, USA.
Published: November 2019
AI Article Synopsis
Article Abstract
Background: To date, the computerized adaptive testing (CAT) version of the Neuro-quality of life (QOL) has not been assessed in a large sample of people with multiple sclerosis (MS).
Objective: The aim of this study was to assess the associations between the CAT version of Neuro-QOL and other clinical and patient-reported outcome measures.
Methods: Subjects ( = 364) enrolled in SysteMS completed the CAT version of the Neuro-QOL and the 36-Item Short Form Survey (SF-36) within 4 weeks of a clinical exam that included the Multiple Sclerosis Functional Composite-4 (MSFC-4). The correlations between the Neuro-QOL domains and the MSFC-4 subscores and the SF-36 scores were calculated. The changes over time in the Neuro-QOL and other measures were also examined.
Results: The lower extremity functioning score of the Neuro-QOL showed the highest correlations with MSFC-4 components including Timed 25-Foot Walk, 9-Hole Peg Test, and cognitive score. The expected domains of the Neuro-QOL showed high correlations with the SF-36 subscores, and some Neuro-QOL domains were associated with many SF-36 subscores. There was limited longitudinal change on the Neuro-QOL domains over 12 months, and the change was not associated with change on other measures.
Conclusion: The CAT version of the Neuro-QOL shows many of the expected associations with clinical and patient-reported outcome measures.
Purpose: To develop the PROMIS Pediatric Stigma (PPS) and Skin (PPS-Skin) by constructing a common metric for measuring stigma in children with various conditions, while capturing the unique features of each condition.
Methods: Data from 860 children, ages 8-17, with a diagnosis of epilepsy, pNF (neurofibromatosis type 1 associated neurofibroma plexform), MD (muscular dystrophy), cancer, or skin conditions recruited from three projects were analyzed. Children with epilepsy, pNF and MD (sample-1) completed the original 18-item Neuro-QoL Stigma, while children with cancer and skin conditions (e.
Purpose: Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by excessive daytime sleepiness, sleep inertia, and prolonged sleep. Its impact on patients' quality of life and daily functioning has not been fully elucidated. The Real World Idiopathic Hypersomnia Outcomes Study (ARISE) evaluated the daily functioning, relationships, cognition, emotional well-being, and productivity/employment of participants with idiopathic hypersomnia.
Context: Injury or illness can affect individual perceptions of health status and health-related quality of life (HRQOL). Concussion can result in different symptoms, impairments, and functional limitations that have been found to lower HRQOL. Furthermore, concussion is known to influence the emotional and behavioral dyscontrol domains of HRQOL in pediatric populations; however, this has yet to be explored in other populations.
Traditional outcome measures for spinal muscular atrophy (SMA) clinical trials are insufficient for capturing the complete severity of the disease, prompting a study to evaluate the psychometric properties of various questionnaires addressing patient and caregiver insights.
Conducted as a multicenter, prospective, noninterventional study, it included 113 SMA patients aged 2 to 17 years and utilized a range of assessments, including existing scales and newly developed items to evaluate domains such as fatigue and vulnerability.
The results demonstrated high reliability and construct validity for most measured domains, with perceived fatigability being notably affected and the SMA Independence Scale (SMAIS) showing sensitivity to changes, highlighting the need for improved assessment tools in SMA.
Background: Evidence supports several countries introducing legislation to allow cannabis-based medicine as an adjunctive treatment for the symptomatic relief of chronic pain, chemotherapy-induced nausea, spasticity in multiple sclerosis (MS), epileptic seizures, depression, and anxiety. However, clinical trial participants do not represent the entire spectrum of disease and health status seen in patients currently accessing medicinal cannabis in practice.
Objective: This study aims to collect real-world data to evaluate health-related quality of life in patients prescribed medicinal cannabis oil and describe any differences over time, from before starting therapy to after 3 and 12 months of therapy.
