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Brain Injury News
The Evidence Report Identifies The Following Areas For Future Research
Randomized trials of the timing and intensity of early and acute rehabilitation would be useful. Because the patient characteristics that affect outcomes also affect the type and level of rehabilitation services delivered, it may be unlikely that any observational study can provide definitive evidence about effectiveness. Moreover, assigning patients to different levels of intensity or to early versus conventional initiation of rehabilitation in a prospective trial may be ethically acceptable, since these different levels represent a range of current practice rather than a deviation from it.
Population-based studies of all patients with TBI, including those who do not enter inpatient rehabilitation facilities, are imperative. Important questions about the effectiveness of rehabilitation and its component disciplines require the development of regional or national registries, with standardized data collection and identification and followup of all patients with head injury.
Research designs for future studies should incorporate health outcomes of importance to people with TBI and their families. Commonly used measures should be more strongly linked to health outcomes. Future studies should address the effect of spontaneous recovery, systematize criteria for entering cognitive rehabilitation, and differentiate between the effects of general stimulation and specific techniques. The greatest overall need for the evaluation of supported employment programs is a series of trials with adequate controls and unbiased allocation of clients to the conditions compared.
Future research should focus on improving the outcome measures used to examine the results of case management in TBI rehabilitation. In addition to outcomes of changed patient functionality, there should be outcomes of changed family functionality. Since much of case management communication is directed toward helping family members learn what to expect and where to obtain services, relevant outcomes would include family use of community and rehabilitation services and indicators of family assertiveness about care expectations. While case management may exert only an indirect effect on a patient's functional outcomes such as level of disability, vocational status, and living status, it is possible that case management can directly affect family knowledge of TBI rehabilitation needs and services, level of psychosocial anxiety, and family competency in coping with TBI.
Definition:
Alexander disease is considered one of the leukodystrophies, a group of disorders where the primary abnormality is the inability to maintain the fatty covering (myelin) that insulates nerve fibers in the brain. Alexander disease is a rare disorder of the nervous system that usually begins during infancy or early childhood.
Crouzon syndrome
Definition:
Many of the signs of Crouzon syndrome result from the early fusion of the skull bones during childhood. Abnormal growth of these bones leads to wide-set, bulging eyes due to shallow eye sockets; eyes that do not point in the same direction (strabismus); a beaked nose; and an underdeveloped upper jaw.
Jackson-Weiss syndrome
Definition:
Many of the characteristic facial features of Jackson-Weiss syndrome result from the premature fusion of the skull bones. The head is unable to grow normally, which can lead to a misshapen skull, widely spaced eyes, and a bulging forehead. Foot abnormalities are the most consistent characteristic, as not all individuals with Jackson-Weiss syndrome have abnormal skull or facial features.
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