Innovations in Care for Patients with ALS

In this video, Merit Cudkowicz, MD, MSc, chief of Neurology Service, director of the Sean M. Healey & AMG Center for ALS, director of the Amyotrophic Lateral Sclerosis (ALS) Clinic and the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital and Partners HealthCare, discusses innovations in care for patients with ALS such as the House Call Program and TeleNeurology at Mass General.

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This is Part 2 of a three-part series on ALS treatment.

• Part 1: Innovations in ALS Clinical Trials
• Part 3: Biomarkers to Accelerate ALS Therapy Development

Transcript

People today with ALS are living longer and a better quality of life because of the care that they’re receiving from ALS centers and because of the advances in therapeutics. It’s really important for people with ALS to have their care by experts in the illness because we know from lots of studies that people live longer and have a better quality of life.

Some of the really important care innovations in the last couple years have been a result of the community listening to people with ALS and their families of what their needs are. For example, at MGH, we’ve started the ALS House Call program where we can see patients in their homes and we can make sure that they have everything they need to have the best quality of life possible. Our feedback from our patients has been tremendous. We also now want to help other communities set up similar programs.

Another innovation is the use of technology to help reach our patients and reach people with ALS all over the world who might have access to experts, so we use something called TeleNeurology to see patients in their homes through the computer. It’s like Skype but it’s a secure network and, again, the feedback from our patients has been tremendous. So, this way, instead of seeing someone every three months in the clinic, we can see them every couple weeks, we can see them whenever they us or have a question, and we can see how they’re living in their home so that we can optimize their care.

Clinical care has changed a lot in the last couple years by a lot of focus on specialized care. We know that if we’re very attentive to someone’s nutritional status that people can live longer. And, we know that if we are very aggressive and proactive about breathing that people can live longer and have a better quality of life.

So, there’s now really over 100 ALS centers in the United States, which are really specialized centers of multidisciplinary care that can take care of every aspect of a person’s illness and that alone has shifted the curve meaning that people are doing better and living longer. We need much more but the base should be this best care, so one of the things we’re doing at MGH is trying to identify areas in the country where people don’t have access to ALS so that we can help develop it in those cities. That can be either by working a local neurologist to set up an analyst clinic like we’ve done in Holy Cross Hospital in Fort Lauderdale or setting up a TeleNeurology program so that we can see patients in those states and help them with their ALS care.

Learn about the ALS Mulitdisciplinary Clinic at Mass General

Refer a patient for ALS care