Background Multiple Sclerosis (MS) is a chronic progressive and disabling disease of the central nervous system with dramatic variations in the combination and severity of symptoms it can produce. The lack of reliable disease specific health-related quality of life (HRQL) measures for use in clinical trials prompted the development of the Neurology Quality of Life (Neuro-QOL) instrument, which includes 13 scales that assess physical, emotional, cognitive, and social domains, for use in a variety of neurological illnesses. Objective Initial assessment of the reliability and validation of the Neuro-QOL short forms (SFs) in MS. Methods We assessed reliability, concurrent validity, known groups validity, and responsiveness between cross-sectional and longitudinal data in 161 recruited MS subjects. Results Internal consistency was high for all measures (α = 0.81 - 0.95) and ICCs were within acceptable range (0.76 - 0.91), concurrent and known groups validity were highest with the Global HRQL question. Longitudinal assessment was limited by the lack of disease progression in the group. Conclusions The Neuro-QOL SFs demonstrate good internal consistency, test-re-test reliability, and concurrent and know groups validity in this MS population, supporting the validity of Neuro-QOL in adults with MS
PROMIS measures had good statistical properties. In addition to the known advantages of PROMIS, such as lower patient burden and the ability to assess the broadest range of functioning, our data demonstrated that for patients with upper extremity limitations, a region-specific measure such as the UE-CAT may perform more favorably than an overall/full body physical function measure.
Objectives: To evaluate the reliability, convergent validity, known-groups validity, and responsiveness of the Patient-Reported Outcomes Measurement Information System (PROMIS) Mobility Computer Adaptive Test (CAT) and PROMIS Physical Function 8a Short Form. Design: Prospective cohort study. Setting: Two Level-I trauma centers. Patients: Eligible adults with an isolated lower extremity trauma injury receiving treatment were approached consecutively (n = 402 consented at time 1, median = 80 days after treatment). After 6 months, 122 (30.3%) completed another assessment. Intervention: Cross-sectional and longitudinal monitoring of patients. Main Outcome Measurements: Floor and ceiling effects, reliability (marginal reliability and Cronbach's alpha), convergent validity, known-groups discriminant validity (weight-bearing status and fracture severity), and responsiveness (Cohen's d effect size) were evaluated for the PROMIS Mobility CAT, PROMIS Physical Function 8a Short Form, and 5 other measures of physical function. Results: PROMIS PFSF8a and Foot and Ankle Ability Measure Activities of Daily Living Index had ceiling effects. Both PROMIS measures demonstrated excellent internal consistency reliability (mean marginal reliability 0.94 and 0.96; Cronbach's alpha = 0.96). Convergent validity was supported by high correlations with other measures of physical function (r = 0.70–0.87). Known-groups validity by weight-bearing status and fracture severity was supported as was responsiveness (Mobility CAT effect size = 0.81; Physical Function Short Form 8a = 0.88). Conclusions: The PROMIS Mobility CAT and Physical Function 8a Short Form demonstrated reliability, convergent and known-groups discriminant validity, and responsiveness in a sample of patients with a lower extremity orthopaedic trauma injury.
Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health related quality of life (HRQL). Neuro-QoL is an NINDS-funded system of patient reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-methods and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty one people diagnosed with epilepsy participated, of which the majority were male (62%), Caucasian (95%), with a mean age of 47.3 (SD=16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol and Positive Affect & Well-being. Neuro-QoL short forms demonstrated adequate reliability (internal consistency range = .86–.96; test-retest range = .57–.89). Pearson correlations (p<.01) between Neuro-QoL forms of emotional distress (Anxiety, Depression, Stigma) and the QOLIE-31 Emotional Well-being Subscale were in the moderate to strong range (r’s = .66, .71 & .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r’s = .59, .74 & .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r’s = .58 & .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function Subscale (r’s = .60 & .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate to strong correlations with the QOLIE-31 Cognition subscale (r’s = .65 & .75, respectively) and moderate relations with the Liverpool Adverse Events scale (r’s = .51 & .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r=−.65), Liverpool Adverse Events Scale (r=.69) and the Liverpool Seizure Severity Scale (r=.50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5–7 months, including Fatigue, Sleep Disturbance, Depression, Positive Affect & Well-being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test-retest reliability, convergent validity and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.
Background: Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality. Methods and Results: The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource. Conclusions: MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.