Magazine article The Exceptional Parent

How Do You Measure Quality of Life? (Special Report)

Magazine article The Exceptional Parent

How Do You Measure Quality of Life? (Special Report)

Article excerpt

How does a team of researchers measure and describe changes in quality of life among a group of people with developmental disabilities? What is quality of life and is it intrinsic, or objective? These were important questions when two years ago discussions began regarding a study to note changes in condition and quality of life for adults with developmental disabilities who were living in long-term care facilities and who had been implanted with the vagus nerve stimulator (VNS).

EXPLAINING VNS

VNS is a relatively new treatment for seizures, and has been approved by the FDA since 1997. The device is implanted in the left chest wall and has a lead that wraps around the vagus nerve in the left neck area. Once implanted, it is programmed to send out periodic impulses and has been proven to reduce the number of seizures in some patients. The device also comes with a magnet that can be used immediately before or during a seizure and is believed to abort or reduce the severity of the seizure.

TREATING PATIENTS WITH DEVELOPMENTAL DISABILITIES

Dr. Roger L. Huf, a pediatric neurologist who also teaches at UCLA and the director of pediatric neurology at the Epilepsy and Brain Mapping Center, had noted positive changes in his patients who had the VNS implant. He had also heard encouraging reports from caregivers and families regarding his patients. The families and caregivers were saying that the patients were more "awake and alert" following the implant. However, no one had the opportunity to study these changes. Dr. Huf wanted to measure and describe changes in quality of life in a study group of 40 of his patients who had been implanted with VNS and whose medication had been reduced.

However, he did not want to perform the study on the patients he saw in his office. He had a different group in mind, and the patients he wanted to help he had known, in some cases, for over 20 years.

In the early 1980s, Dr. Huf first began treating patients who were clients at intermediate care facilities for the developmentally disabled (ICF DDs). These are long-term residential facilities that provide active treatment or habilitation training eight hours a day plus nursing care. He began to see the patients at the facility when it became evident that it was less anxiety-producing for them to be seen in their own environment. At the facility, he could talk to more staff and see a patient's entire chart. Furthermore, nurses were available to answer questions and hear explanations.

There was no shortage of treatment options for most of these clients. However, after trying medication changes and ruling out the ketogenic diet and invasive surgeries, Dr. Huf sought alternatives to treat his patients with medically refractory seizures. When he heard about VNS, he was hopeful. After some of his private patients were implanted, he seriously considered using it in clients with developmental disabilities. The device had been used in this population before; however, no studies had been completed.

MEASURING QUALITY OF LIFE

The manufacturer of the VNS, Cyberonics, Inc., was supportive and approved the study. Next, Dr. Huf identified those clients whom he thought could benefit from the device. He already considered the device a good treatment option, and would suggest that clients have the implant even if they did not participate in the study.

FINDING PARTICIPANTS

The study began in August 2000, and included clients with developmental disabilities who were living in ICF DD facilities, had refractory seizures, and had been on three or more anticonvulsants at the same time. In addition, the group included individuals who had attempted numerous medications that failed, or those who were having liver or kidney damage as a side effect from long-term use of anticonvulsants.

Another group of patients whom Dr. Huf thought he could help with this device were those who refused to take medications. …

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