Mass General ALS experts believe the new ALS House Call Program will help to change the course of medical care planning and improve outcomes for people with amyotrophic lateral sclerosis.

Clinicians at Massachusetts General Hospital’s ALS Multidisciplinary Clinic are known for providing world-class care to people with amyotrophic lateral sclerosis (ALS), and they are always looking for ways to improve, based on feedback from people with ALS and their loved ones. In recent years, they have expanded the specialties represented in the clinic and taken bold steps to move care beyond the confines of the clinic using virtual visits, patient webinars, and email notifications. These improvements are paying dividends, opening new channels of communication, bringing clinicians and people with ALS closer than ever.

The pilot ALS House Call program will center care around the lives of people with ALS in a new way.

Yet a final boundary has remained largely uncrossed – the threshold into the homes of people with ALS. Ironically, it was only a half century ago that physicians performed most of their work in patient’s homes – now house calls are exceedingly rare. Yet for people with ALS, providing their clinic care team with a deep understanding of their home environment can substantially improve their care while reducing the burden of accessing ALS care. It could mean a welcome reduction in the number of early morning awakenings and long commutes with medical equipment in tow.

For their part, the providers in the Mass General ALS clinic believe house calls can provide critical information that can change the course of medical care planning and improve outcomes.

Helping Patients Live More Comfortably

“A large part of the care we provide to people with ALS is comprised of insights on functional struggles, making changes in medicine, offering advice – and none of that depends on the technology at the hospital,” says James Berry, MD, MPH, co-director of the ALS Multidisciplinary Clinic. “The model of only centralized hospital care might not be required for ALS patients and worse, may be creating unnecessary barriers for people with ALS.”

“We are excited about this program because we think it’s the right way to care for people with ALS,” says Dr. James Berry.

And now they are springing into action with support from EGL Charitable Foundation and in partnership with Compassionate Care ALS (CCALS), a nonprofit focused on supporting people with ALS in their homes.

The pilot ALS House Call program will center care around the lives of people with ALS in a new way. They will be able to share their environment and daily routines with their clinicians to find optimal medical solutions to fit their lives. Whether it’s measuring the width of a hallway for wheelchair access or seeing that prepared meals aren’t lasting throughout a long day, visiting Mass General clinicians can find ways for patients to live more comfortably with ALS.

Care Needed and Deserved

“We’re driven to provide the kind of care people with ALS need and deserve, even if that means rethinking the status quo. We are excited about this program because we think it’s the right way to care for people with ALS,” says Dr. Berry. “It goes beyond typical care at the clinic, which is currently reimbursed by insurance, yet we think that with enough data, we will be able to show that house calls are also a more effective way to provide care.”

And, for most people with ALS, the House Call program will supplement, not completely replace, care at the clinic. There will always be a role for the diagnostic approaches housed in centralized locations, and the Mass General clinic, one of the largest and most active ALS research sites in the U.S., is a place of research (there are more than 20 ALS clinical trials underway at Mass General) and hope for most people with ALS. The House Call program may even help bring research to people with ALS, expanding their opportunities to participate.

“The ALS House Call program is an incredibly important advance in the care of ALS families,” says Ron Hoffman, founder and executive director of CCALS.

“We hope that the house call program will offer new options for care and improve the experience for our patients, improve management of symptoms, and increase access to clinical trials and new treatments,” says Merit Cudkowicz, MD, MSc, chief of Neurology at Mass General and an ALS clinician and researcher. “This program will help bring research to our patients and families in the home, thereby increasing the opportunities for people to be part of clinical trials and other types of research to better understand ALS and to find treatments.”

An Advance for ALS Families

The House Call program will also include a biomedical engineer who will help adapt off-the-shelf technology that people with ALS use to communicate. “Existing tools for augmentative communication are imperfect,” Dr. Berry says, “The engineer will adapt software and hardware to improve existing tools so that they best fit the particular needs of people in their home environments.”

The ALS House Call program will be run in conjunction with CCALS. “The ALS House Call program is an incredibly important advance in the care of ALS families,” says Ron Hoffman, founder and executive director of CCALS.

“I am excited to partner with the extraordinary professionals at MGH ALS clinic, and to continue our long-standing collaboration with them on this unique approach to ALS care,” Mr. Hoffman says. “Dr. Cudkowicz and I met in 1997 when we both cared for Mr. Gordon T. Heald, who inspired the creation of Compassionate Care ALS. We share the same belief that the results through personal attention will recognize the holistic nature of enlightened health care that treats the entire person, physically, emotionally and spiritually.”

A Foundation’s Generous Donation

“This program is unique in its combination of personalized medicine and personalized care, both of the highest quality;” says ALS advocate Daniella Lipper.

The team has already begun making house calls for the first people included. Darlene Sawicki, NP, co-director of the Mass General ALS Clinic and ALS House Call Program, and director of nursing in the Department of Neurology, says the ALS House Call roster will eventually expand to include 50 people with ALS. “Being invited into the homes of people with ALS is a privilege. We hope to offer more support and care by meeting people and their families in their homes. We get to see who they are – their passions and joys – and tailor our care to support their lives best.”

Long a dream of the ALS Multidisciplinary Clinic team, the House Call program became a reality as a result of a generous donation from the EGL Charitable Foundation.

ALS advocate Daniella Lipper Coules is a member of the family that founded the EGL Charitable Foundation. “This program is unique in its combination of personalized medicine and personalized care, both of the highest quality,” says Mrs. Lipper Coules. “We expect its integrated approach will help patients to better manage the dynamic physical, practical and emotional challenges of ALS.”

To learn more about how you can support ALS care and research at Mass General, please contact us.