Allison Gandey

September 28, 2010

September 28, 2010 (San Francisco, California) — Investigators are working to develop a new quality-of-life measure that will cut across chronic adult and pediatric neurologic disorders. Item-bank questions have already been validated in 3000 patients and, according to researchers, are correlating with well-established quality-of-life instruments.

The work is funded by the National Institute of Neurological Disorders and Stroke. Many current quality-of-life measures do not adequately represent the full scope of the impact of chronic neurologic disorders and their treatments. Investigators are looking to incorporate patient-reported outcomes of functioning, such as social, psychological, and mental well-being.

Dr. Jose Cavazos

Jose Cavazos, MD, from the University of Texas Health Science Center in San Antonio, presented his team's latest findings here at the American Neurological Association (ANA) 135th Annual Meeting. Dr. Cavazos conducted a prospective validation of the instrument in adult epilepsy.

His group studied 119 epilepsy patients. Investigators tested patients with the new neurologic quality-of-life (Neuro-QOL) measure, as well as a variety of other instruments, at baseline, 1 week, and 6 months.

Other measures included the following:

  • The Patient Reported Outcomes Measurement Information System Global Health 10 Scale;

  • The Barthel Index;

  • Karnofsky Performance Status Scale;

  • Quality of Life in Epilepsy 31;

  • Liverpool Seizure Severity Scale;

  • Liverpool Adverse Events Profile;

  • Instrumental Activities of Daily Living Scale;

  • The EuroQoL Global Survey; and

  • A pain question.

The goal, Dr. Cavazos explained, is to develop a core set of questions that will address dimensions of quality of life that are universal to patients with chronic neurologic disease but also to develop supplemental questions or modules that address concerns that are specific to particular groups of patients defined by disease, age, or other factors.

Dr. Cavazos showed the new measure and each of its subscales correlated with statistical significance with the Patient Reported Outcomes Measurement Information System Global Health 10 Scale and the EuroQoL Survey (P < .01).

The subscales of the new measure tailored specifically for epilepsy patients also correlated significantly with the Quality of Life in Epilepsy 31 and the Liverpool Adverse Events Profile (P < .01).

The new measure did not correlate well with the Barthel Index, Karnofsky Performance Status, the Liverpool Seizure Severity Scale, and the Instrumental Activities of Daily Living Scale.

The new measure is currently undergoing additional testing. "Although the Neuro-QOL measures have been tested in 2 large calibration studies with disease-based and community dwelling samples, the calibrated short forms are currently being administered in a multi-site clinical validation study," study coordinator, Vitali Ustsinovich, MA, from Northwestern University in Chicago, Illinois, added in an online statement.

The plan is to create a publicly available, adaptable, and sustainable system, affording researchers access to common item repositories and computerized testing.

Other members of the Neuro-QOL project also presented at the meeting. Investigators evaluated the measure for stroke, multiple sclerosis, Parkinson's disease, amyotrophic lateral sclerosis, and pediatric epilepsy.

Mixed Response

So far, the new instrument has been met by mixed reactions. In April, Cindy Nowinski, MD, also from Northwestern University, presented a small study on clinician attitudes toward the new approach.

Dr. Nowinski showed the results from 89 respondents at the ANA annual meeting. She found that most physicians (n = 33) were reluctant to embrace the new measure, whereas many others said they were enthusiastic (n = 25). Some described themselves as reluctantly enthusiastic (n = 17), and others said they were uncommitted (n = 14).

More information on the patient-reported outcomes tool for people with neurologic disorders is available on the Neuro-QOL Website.

The instrument will measure many aspects of neurologic disorders.

This study is funded by the National Institute of Neurological Disorders and Stroke. Dr. Cavazos has disclosed no relevant financial relationships.

American Neurological Association (ANA) 135th Annual Meeting: Derek Denny-Brown New Member Symposium. Presented September 14, 2010.


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