All-Inclusive Care is Clinic Day Imperative
For patients with amyotrophic lateral sclerosis, every minute not spent in medical offices waiting to see specialists is another minute spent with loved ones helping them live their lives to the fullest.
That's why the Cedars-Sinai ALS Program gives patients a multidisciplinary approach to the care and treatment of Lou Gehrig's disease with the weekly ALS clinic day, offered each Wednesday.
This approach saves time and effort by bringing together all the different healthcare providers at one time and place to meet with patients and their loved ones, offering support, education and research opportunities.
"When we first came it really opened our eyes and everyone here was so welcoming. You felt like everyone was your family. Everyone was so sweet and warm, including the doctors, very caring," said Setsuka Kawaguchi, whose husband James was diagnosed with ALS in 2012.
"It was then that I said, 'We have hope' and it's been a nice experience since the first day."
About 30,000 people in the United States have ALS. The progressive neurodegenerative disease affects nerve cells in the brain and the spinal cord, compromising muscle function, causing weakness and muscle atrophy. Life expectancy after diagnosis is about five years, but some patients live longer.
Robert H. Baloh , MD, PhD, director of neuromuscular medicine and the ALS Program at Cedars-Sinai, said it's all about customer service at the clinic, which is located on the sixth floor of the Advanced Health Sciences Pavilion.
"We want to take care of as many patients as we can," he said. "I always want our patients to enjoy coming to the clinic and look at it as a positive place, a place where we can help them get involved in research or a place where we can help them overcome challenges they're faced with."
Since Baloh's arrival in 2012 the program has grown to more than five times it's original size, to accommodate 10-15 patients weekly, who rotate through a day of appointments from 8 a.m. to 4 p.m. Wednesdays.
The multidisciplinary team includes four neurologists, registered nurses, fellows, physical therapists, an occupational therapist, speech language pathologist, a registered dietitian, pulmonologist, social worker, a genetic counselor and a research coordinator. Members of Cedars-Sinai's Department of Spiritual Care also meet with patients during the clinic day.
Consulting with that many specialists can take a couple of hours, but many patients don't mind because it saves them time, money and effort overall, while giving them a chance to ask questions.
"This visit to the clinic helped because we had chosen the wrong breathing machine and now, with Cedars' expert help, we're going to be able to get the right machine. We didn't know any different," said Vernon McDaniel, husband of Camille, who was diagnosed with ALS in November 2013.
The couple was also able to see a dietitian, and order additional gear for a wheelchair and breathing device.
For 70-year-old James Kawaguchi's family, having all the specialists under one roof prevents them from having to rent a wheelchair accessible van multiple times and coordinate everyone's schedule for what can often amount to a single 15-minute consultation.
"The specialists at the clinic day all communicate with each other–the neurologist will talk to the therapist and the nurses will talk to the nutritionists. Everyone is on the same page, or is able to be on the same page. They can look in the file and know everything there is to know about the patient," said Kawaguchi's daughter, Jennifer.
Another focus of the ALS Program is a deep involvement in ongoing research into treatments and, ultimately, a cure for ALS.
"ALS patients are very tuned into research; they know a lot and are very knowledgeable," said Baloh. "We wanted to have research be the core component to the clinic so patients can be involved if they want to. They have that option, and they didn't have that before."
Research is vital to ALS patients, especially since the disease currently has no cure, said Peggy Allred, who oversees Cedars-Sinai's ALS clinical research program. During clinic days, Allred can be found consulting with patients and team members about the latest trials available.
"To be able to bring in experts from different areas and answer some of the questions patients may have is very important to them," says Allred.
It is this research, said Baloh, that will spark changes in the way the disease is being treated.
"While we set up the clinic with patient care as the primary mission, ultimately we are going to do more for patients through scientific research to find effective treatments," he said.
"The goal of the clinic is not only to take care of the patient, and manage their needs, but it is also to be an extension of the exciting research programs going on just upstairs in the Advanced Health Sciences Pavilion," Baloh added. "We need to have patients ready and interested in getting involved in research so we can change the course of this disease."
Most patients are seen at the clinic day every three months, but since ALS-related symptoms can develop or advance quickly, patients are able to visit with physicians as needed. And since the clinic day is held weekly, Baloh said new patients are able to see the team very quickly, usually within a week.
"While there is still no cure for ALS, patients still have ailments and we want to try to care for those ailments the best we can," said Tami Kendra-Romito, ALS clinical coordinator, who manages the program. "If we can make them a little more comfortable by taking some of the more mundane and time-consuming details off their plate.
"Whatever we can do to make their lives a little easier, that's what we'll do."