Objective To provide a clinically useful means of interpreting change for individual patients on the Neurological Quality of Life (Neuro-QoL) adult short forms (SFs) by applying a Classical Test Theory concept for interpreting individual change. Design Secondary analysis of existing data. Setting Community. Participants Persons with neurological conditions including stroke, epilepsy, amyotrophic lateral sclerosis, multiple sclerosis, and Parkinson’s disease residing in community settings. Interventions Not applicable. Main Outcome Measures Neuro-QOL SFs for Applied Cognition-General Concerns, Applied Cognition-Executive Function, Applied Cognition-Combined, Ability to Participate in Social Roles and Activities, Satisfaction with Social Roles and Activities, Positive Affect and Well-Being, Depression, Stigma, Upper Extremity Function (Fine Motor, Activities of Daily Living), Lower Extremity Function (Mobility), Anxiety, Sleep Disturbance, Fatigue, and Emotional and Behavioral Dyscontrol. Methods We estimated conditional minimal detectable change (cMDC) indices from the pooled standard errors (SEs) adjusted for a 95% confidence interval (CI) using the average of the SEs for any given pair of scores multiplied by the z-score, or [(SEScore1 +SEScore2)/2 · 1.96]. Results The cMDC indices are generally smallest in the mid-range of all scales, ranging from 3.6 to 11.2 T-score points, and higher on the outer quartiles ranging from 3.7 to 21.6 T-score points. The lowest mid-range cMDCs were for Satisfaction with Social Roles and Activities (3.6–4.7 T-score points) and the largest was for Sleep Disturbance (9.4–11.2 T-score points). Conclusions Change indices can help clinicians and investigators identify differences for individual patients or subjects that are large enough to motivate treatment change. cMDCs can reduce misclassification of magnitudes of change that are near the margins of error across the range of the Neuro-QoL SFs.
A basic tenet of principles of associative learning applicable to models of spatial learning is that a cue should be assigned greater weight if it is a better predictor of the goal location. Pigeons were trained to locate a goal in an acute corner of an isosceles trapezoid arena, presented on a slanted floor with 3 (Experiment 1) or 2 (Experiment 2) orientations. The goal could be consistently determined by the geometric shape of the arena; however, its position with respect to the slope gradient varied, such that slope position was not a good predictor of the goal. Pigeons learned to solve the task, and testing on a flat surface revealed successful encoding of the goal relative to the geometric shape of the arena. However, when tested in the arena placed in a novel orientation on the slope, pigeons surprisingly made systematic errors to the other acute-but geometrically incorrect-mirror image corner. The results indicate that, for each arena orientation, pigeons encoded the goal location with respect to the slope. Then, in the novel orientation, they chose the corner that matched the goal's position on the slope plus local cue (corner angle). Although geometry was 2 times (Experiment 2) or even 3 times (Experiment 1) as predictive as slope, it failed to control behavior during novel test trials. Instead, searching was driven by the less predictive slope cues. The reliance on slope and the unresponsiveness to geometry are explained by the greater salience of slope despite its lower predictive value.
Background: People with disabilities, who face multiple barriers to care, experience health disparities, yet few studies have measured health literacy in this population. Objective: This study evaluated functional literacy, health literacy, fluid cognitive function, and self-reported health in people who live in community dwellings with spinal cord injury, stroke, or traumatic brain injury. Methods: Participants with a traumatic spinal cord injury, stroke, or traumatic brain injury, one-year postinjury, and age 18 to 85 years, completed a battery of instruments at three medical centers in the Midwestern U.S.: functional literacy (word recognition, vocabulary knowledge), health literacy (comprehension of prose, document, and quantitative health information), fluid cognitive function (memory, executive function, and processing speed), and patient-reported outcomes (mobility, fatigue, sadness, anxiety, social function, and overall health). Key Results: There were strong correlations between functional literacy, health literacy, and fluid cognitive function. After adjustment for sociodemographic and clinical characteristics, higher health literacy was associated with better mobility, less anxiety, and better overall health; higher functional literacy was associated with less anxiety and better overall health; and higher fluid cognitive function was associated with better mobility, less sadness, better social function, and better overall health. Conclusions: To effectively address limited health literacy among people with spinal cord injury, stroke, and traumatic brain injury, and ensure that they are able to be informed partners in their health care, intervention is required at the level of patients, providers, and health care delivery systems. A special consideration is to ensure that health information is both well-targeted to people's health literacy levels and accessible for people with a range of physical, cognitive, and sensory limitations. The multimedia self-administered health literacy measure used in this study could be useful to rehabilitation providers and designers of health information and interfaces. [ Health Literacy Research and Practice. 2017;1(2):e71–e85.] Plain Language Summary: Health literacy represents people's abilities to obtain, understand, and use health information to make informed decisions about their health and health care. People with disabilities face physical, attitudinal, economic, and structural barriers to care. Consideration of health literacy in rehabilitation practice can enhance the effectiveness of the patient-clinician relationship and help address the needs of this population.
A number of projects exist that are investigating the ability to restore visual percepts for individuals who are blind through a visual prosthesis. While many projects have reported the results from a technical basis, very little exists in the professional literature on the human experience of visual implant technology. The current study uses an ethnographic methodological approach to document the experiences of the research participants and study personnel of a optic nerve vision prosthesis project in Brussels, Belgium. The findings have implications for motivation for participating in clinical trials, ethical safeguards of participants and the role of the participant in a research study. Implications for Rehabilitation Rehabilitation practitioners are often solicited by prospective participants to assist in evaluating a clinical trial before making a decision about participation. Rehabilitation professionals should be aware that: The decision to participate in a clinical trial is ultimately up to the individual participant. However, participants should be aware that family members might experience stress from of a lack of knowledge about the research study. The more opportunities a participant has to share thoughts and feelings about the research study with investigators will likely result in a positive overall experience. Ethical safeguards put in place to protect the interests of an individual participant may have the opposite effect and create stress. Rehabilitation professionals can play an important role as participant advocates from recruitment through termination of the research study. Participant hope is an important component of participation in a research study. Information provided to participants by investigators during the consent process should be balanced carefully with potential benefits, so it does not destroy a participant's hope.
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