Presented as TED-style “talks” led by health industry leaders, the 20-minute keynote presentations will provide attendees with maximum exposure to key insights within the home-based care and hospice communities. Concurrent sessions will cover topics such as integrated systems and partnerships, chronic condition management, advanced illness and end of life, and non-profit leadership. Pre-conference sessions discussing innovations in workforce development and pathways to performance will also be available for attendees. KEYNOTE SPEAKERS:
WHEN: April 19 4:00 PM (PT) – April 21 12:00 PM (PT) WHERE: Hilton San Diego Bayfront |
by Audrey Kinsella, MA, MS
A new pilot study underway at University of California, Riverside Medical Clinics, dubbed “MS-CONNECT” (Clinicians’ Online Neurology Network Empowering Communities through Telemedicine – Multiple Sclerosis), will evaluate home telehealth service delivery to patients living with MS.1
MS is a progressively debilitating chronic neurological disease affecting the brain and spinal cord. The disease seriously impacts mobility and cognition of more than 2 million people world-wide. There is no cure for MS and treatment results vary widely.
In this one-year study, UC Riverside researchers and clinicians will follow 200 MS patients. 100 will be randomly assigned to a control group, receiving traditional care in clinics. The other half will be seen at home, both by a visiting NP and via tele-video by the developer of the MS-CONNECT pilot-study, physician Elizabeth Morrison-Banks, M.D., a UC Riverside health science clinical professor.[Details are provided about funding by Genentech, maker of a range of MS pharmaceuticals, and about objectives of this pilot project reaching out to the MS patient population which is relatively unknown-to-telehealth studies.]
MS-CONNECT is being funded for $100,000 by Genentech, maker of a range of MS pharmaceuticals. According to Dr. Morrison-Banks, she and her team of UC Riverside researchers and clinicians have as their objective to determine whether telehealth improves care of MS patients. “They will compare data from the telemedicine intervention group with the control group,” she explained, “and compare a number of variables, including pain and fatigue levels, visual impairment, bladder and bowel control, plus mental health, sexual satisfaction and overall quality of life.2
Another telehealth study. Needed?
This one is different. While over the past decades countless home telehealth pilots have achieved measurable success with patients living with other chronic diseases such as diabetes, CHF, respiratory failure, etc., none has focused on homebound MS patients, even though this painful and debilitating neurological disease affects at least 400,000 people in the U.S.
Few MS patients currently receive any home health care services. Most of us live under the radar, with many studies showing that large numbers are not even diagnosed.3 Consequently, home health providers may be less familiar with the pain and fatigue MS patients experience.
Pain may be understandable but what is this excruciating fatigue like? Perhaps a first-person account would shed some light. Imagine the uneasiness of a life-long writer whose work habit has always been to write first drafts in longhand before turning to the computer. Then, one day, she is not able to hold an ordinary pen because it is too heavy and her hand wears out before completing a single sentence.
After 35 years of this, I can see that little has changed. There is no miracle drug yet, and though many MS sufferers of any age qualify for Medicare, few can be judged to be homebound, even though getting out to see a neurologist is extremely difficult and, therefore, only attempted about once a year. Inventing work-arounds in order to perform what used to be normal tasks is the order of every day.
Telehealth for MS patients
Dr. Morrison-Banks described her early results. “While our preliminary data suggested that telemedicine is effective for and acceptable to patients with MS, outreach was limited by the complexity of scheduling visits to general neurologists’ offices in coordination with simultaneous telemedicine consultations. We are therefore proposing this new home-based telemedicine program at UC Riverside.” 4
She said that the difficulties of travel to UC Riverside clinics was a repeatedly voiced concern by MS patients. Those targeted for this study cited discomforts of travel and debilitating fatigue as major challenges to even getting to the clinic. Even when they were able to do so, they described to her, the challenges continued. Just getting from a vehicle to the clinic door in Riverside’s triple-digit desert heat dramatically increases fatigue.
Heat is one of the primary triggers the onset of painful MS symptoms. Avoiding just this one trigger is argument enough to opt for care in the comfort of one’s home. Hence, the very act of moving the medical clinic into the home via telehealth already increases the level of care and the patient’s quality of life.
Dr. Morrison-Banks explained the process to me in an email:
The video group visits with the clinical team will be similar to typical neurology office visits except that the nurse practitioner will be present in person to conduct the visit and I will participate by a HIPAA-compliant video connection. Together, we will review the participant’s medical history, perform a neurological examination (which the nurse practitioner performs in person as I watch by remote connection), and go over available test results before discussing any necessary testing and treatment with the participant and any family members or friends whom the participant may wish to invite.
In both study groups, the number of visits is determined by each participant’s individual needs. There will be a minimum of two visits, including an initial visit when the participant first enrolls in the study. If the participant is doing well with very few symptoms, her or she may only need one final visit at the end of the six-month study period. On the other hand, if the person is experiencing MS complications, he or she might need to be seen monthly or even weekly until stable again.
If at any point a participant requires in-person care for serious MS complications, we will help arrange for face-to-face care as soon as possible. In other words, we don’t expect that telemedicine will ever replace face-to-face care 100% of the time for everyone living with MS. It’s important to recognize when a video visit has reached its limits and needs to be replaced with – for instance – an ambulance ride to the hospital.
The promise of this project is that it can provide more frequent contacts with a patient’s neurologist than the cursory annual exam most MS patients typically receive. So, while not intended to be definitive, this study will certainly become fodder for more research to improve care for MS patients.
According to the National Multiple Sclerosis Foundation, about 200 new cases of MS are diagnosed each week in the United States.5 Dr. Morrison-Banks’ email concluded:
It is certainly possible that participants in the [telehealth] video group may experience fewer acute care service needs, if they can get these needs met more effectively through the video visits. Sometimes those who most need MS care are the ones who have the hardest time getting into the office. We hope that, by bringing the care they need into their homes, the telemedicine platform will help these people achieve better and more frequent communication with the MS doctor, which will hopefully translate into better outcomes. In our study, we will be measuring how participants in both study groups rate their own MS-related quality of life by asking them to complete a battery of questionnaires at the beginning and end of the study. Some of the issues these questionnaires address include fatigue, pain, the impact of various MS symptoms (including vision, bowel and bladder control), mental health and social support.
Thanks to Dr. Morrison-Banks’ work, the next generation of research projects in MS care may lead to new and better ways to keep tomorrow’s MS patients well at home.
1 “Telemedicine for Treating Multiple Sclerosis Patients, https://www.healthcanal.com/brain-nerves/multiple-sclerosis/235793-using-telemedicine-treat-multiple-sclerosis.html
2 http://www.healthcareitnews.com/news/uc-riverside-kicks-telemedicine-pilot-treat-patients-ms
3 http://www.nationalmssociety.org/What-is-MS
5 http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic
Audrey Kinsella, MA, MS, is HCTR’s telemedicine reporter. She has written on home telehealthcare and new technologies for home care service delivery for 20 years, in 6 books, multiple web sites, and more than 150 published articles. Audrey can be reached at audreyk3@charter.net or 828-230-0895
©2017 by Rowan Consulting Associates, Inc., Colorado Springs, CO. All rights reserved. This article originally appeared in Tim Rowan’s Home Care Technology Report. homecaretechreport.com One copy may be printed for personal use; further reproduction by permission only. editor@homecaretechreport.com