A unique and innovative telemedicine project is providing residents suffering with Parkinson's disease at the Presbyterian Home and Rehabilitation Center, New Hartford, NY, access to neurologists at the University of Rochester Medical Center. It is the first Parkinson's disease telemedicine program in the country.
Tony Joseph, administrator for the past 10 years at the Presbyterian Home, was the catalyst for initiating the program. “We [nursing homes] do a great job with Alzheimer's, diabetes, and short-term rehab stays, but we've done a lousy job of taking care of residents with Parkinson's.” Joseph says the reason is there aren't the numbers-only 1.5 million diagnosed Parkinson's cases. With diabetes, there are 30 million patients over the age of 65. When the nursing home opened in 2001, it was the first in the nation to offer specialized care to people with Parkinson's and other movement disorders in a nursing home setting. For years, the Parkinson's patients at the home would typically make 10 trips a year to Syracuse, Albany, or Rochester to see a movement disorders specialist. Joseph says the trips were exhausting for the home's elderly patients. “I knew there had to be a better way,” he says.
About 15 years ago, Joseph made a guest presentation to the Central New York Parkinson's Support Group (CNYPSG). He knew then, if he ever moved back to the area, he wanted to partner with them to help Parkinson's sufferers. That happened in 1999 when Joseph arrived at the Presbyterian Home, a 250-bed nursing home near Utica, New York. “The CNYPSG gave us direction. I asked them what their frustrations were with the disease, and among them was the distance they had to travel for various consultations.” Group members explained that if they were in an area that didn't have movement disorder specialists, they would be referred to facilities sometimes more than a hundred miles away. “For people in their 70s or 80s, that's a long day when you add up travel time, meals, taking a wheelchair, parking, getting to the physician's office, waiting for the physician, the appointment, and then traveling home.” The idea of pairing telemedicine and Parkinson's was born.
Joseph was working with some high-tech people and explained the challenges Parkinson's sufferers face. They thought videoconferencing, even though it was an old technology, would be perfect for consultations. Joseph then hit the road looking for a medical facility to partner with. He says he “hit pay dirt” with Ray Dorsey, MD, and Kevin Biglan, MD, at the University of Rochester Medical Center, 150 miles from the Presbyterian Home. The Medical Center has one of the largest movement and inherited neurological disorders programs in the nation with more than 10 physicians and has been designated a Center of Excellence by the National Parkinson's Foundation and the Huntington's Disease Society of America. Drs. Biglan and Dorsey were also involved with the CNYPSG.
Telemedicine is used successfully in other disease conditions. It is used in Canada for Parkinson's. The Presbyterian Home/University of Rochester project would be the first time it was being used for Parkinson's in the United States. “We were certainly intrigued by the idea,” Dr. Biglan tells Long-Term Living. “We do a lot of research, so we were interested in whether or not we could take care of Parkinson's patients using telemedicine. Most of what we do as far as examination of patients is very visual; a lot of it is history. So we thought this might be a good disease to model and see if telemedicine would work.”
An initial pilot project, funded by grants Joseph found, followed 14 patients for six months and then evaluated the outcomes of those who received care through telemedicine and those who did not. The study found that telemedicine patients had significant improvements in quality of life and motor function. In addition, those receiving telemedicine had trends toward higher satisfaction with their care. The project was so successful that it was continued for another year with grant funding from New York State. “The satisfaction is high on both ends,” Joseph says.
How it works
Joseph spent $35,000 five years ago on a laptop, 42-in. screen, a microphone, and a camera. “Right now,” Joseph says, “you can probably get what I bought for $5,000.” Ana Appler, RN, the nurse manager on the Parkinson's unit at the Presbyterian Home, went to the University of Rochester to study under Drs. Biglan and Dorsey. She initially assisted on the patient-end of the consultation. The caregiver is also welcome during the consultation, which lasts 35 to 40 minutes. A room is set up at Presbyterian Home with the technology to accomplish the “virtual” visit. Dr. Biglan says establishing a doctor/patient relationship has not been an issue at all. “The one thing we did discover during this process was that one of the assessments we like to do with Parkinson's patients is to passively move their limbs. We can't do that because we're not in the room with the patient,” Dr. Biglan says. “We tried to train the nurse to do it and give us feedback, but we found that the reliability between how we rated people and how they did was not as good as it could be.” But the positives far outweigh the negatives. Says Biglan, “Our ultimate goal is to provide high-quality, cost-effective care to Parkinson's patients no matter where they live. Telemedicine allows us to do this.”