"It hits in prime of life," said Sally Dwyer, director of programs and services for the Mid-America Chapter of The ALS Association. "We have young people with their whole lives ahead of them and people who are looking forward to retirement. It is a punch in the stomach" said Dwyer when describing the devastation of an ALS diagnosis.
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"Virtual Dr. Barohn"
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The diagnosis signals a difficult journey ahead and can take a psychological toll on patients and families. For the best care, patients will need to see multiple specialists, including neurologists, mental health professionals, respiratory therapists and physical therapists, to name just a few. Shuffling from office to office can be a tremendous burden on families and accessing a neurologist can sometimes mean a day-long journey. But a new ALS clinic in Wichita is helping to relieve some of the burden by bringing coordinated care to the patient, all in one setting.
The Wichita ALS Telemedicine Clinic is a combination of a telehealth visit, and a comprehensive in-person care team. In-person team meetings are followed by a telehealth appointment with Dr. Richard Barohn, a neurologist in Kansas City who has been integral to starting the ALS clinic. For patients and families navigating so many changes, this "one stop shop" is a welcome relief that means less travel time and better care.
Jack Wilson, a Wichita resident who has been battling ALS for more than seven years, put it this way: "Oh boy, what a wonderful ALS clinic visit. I saw the whole team today. They all showed up for just little old me. Even through ice and snow, it was so much easier and quicker than going to Kansas City. I liked how we met with the doctor via [videoconference] and having the whole team present during the interview."
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Innovation Award
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Not only does the ALS clinic get high marks from patients, it is being hailed by peers as an innovative program. The ALS Mid-America Chapter was recently awarded The ALS Association's Chapter Innovation Award, which recognizes "trailblazing chapters" that are actively developing and implementing new ideas and delivery strategies, with an emphasis on collaboration.
Collaboration has been a key to the success of the ALS clinic, starting with team meetings
before the patient arrives. The team develops an individualized care plan based on each patient's needs, then orchestrates the clinic visit for each patient that day. If a patient has lost weight due to difficulty swallowing, a common condition for ALS, the dietitian and speech and language pathologist might spend the most time with the patient that day. Following the visits with the in-person care team, the patient meets with Dr. Barohn via video conference, along with the rest of the care team.
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| ALS Telemedicince Clinic care team meeting |
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While the care team is a benefit for the patient, gathering so many specialists together at the same time also means that if there are any technological malfunctions, a whole team of professionals is thrown off schedule. That, said HTRC Project Director Janine Gracy, is why developing a detailed protocol is a must. Gracy and members of the University of Kansas Center for Telemedicine & Telehealth team worked with the ALS Association to develop policies and procedures. Gracy said it is important to include a back-up plan for communication should the equipment malfunction. The team developed a checklist for preparing and testing equipment prior to each session, helped with equipment selection and continues to provide technical assistance.
Getting the clinic off the ground has not been easy, said Dwyer, but the intense coordination that went into the clinic has paid off. "Our job is to help patients and families cope, maintain functioning and figure out what is next. We believe in quality of life above all and we believe this clinic helps patients to continue their lives to the fullest extent possible."
New changes to Missouri's Medicaid telehealth regulations will make it easier for patients to receive care the care they need. In February,
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