What worries you most about living with multiple sclerosis?
I’m catching up with a small survey by Can Do MS, an organization that promotes health and wellness education programs. The survey results, released in September, show that disease progression, financial concerns, and loss of independence are top of mind for people with MS. This comes to me as no surprise. And it means we need health care teamwork.
Here are some highlights from the survey:
- More than 75 percent of people with MS are worried about how their disease will progress, with 51 percent citing it as their greatest worry.
- Over 60 percent are concerned about symptoms management.
- About two-thirds of MS patients — and 72 percent of their support partners — say they need more information on how to manage the disease.
MS can be scary
All of these concerns are connected, and they point to the need for better communication between people with MS and their neurologists — particularly in the period immediately following diagnosis. Hardly a day goes by that I don’t see the words “I’m scared” written in an MS-related social media post. The writer is typically newly diagnosed and believes that MS is a death sentence. But this fear is not limited to MS newbies. The worrier may be someone whose neuro has suggested starting or switching a disease-modifying treatment (DMT) and has hasn’t been given enough information about the DMS’s benefits versus its risks. Or it may be someone who can’t afford treatment or who finds it hard to travel to the neurologist’s office.
MS impacts jobs, wallets and independence
Here are some other concerns of people with MS revealed in the survey:
- More than 40 percent of MS patients have left their job or the workplace altogether as a result of MS or its symptoms.
- Nearly 50 percent say their condition substantially affects their job performance.
- Nearly one-third of people with MS say they’re significantly concerned about financial planning for an uncertain future.
- Nearly 70 percent fear loss of independence or worry about their control over important aspects of their lives as a result of MS.
PwMS need info, resources and support
In a news release, Rosalind Kalb, PhD, senior programs consultant with Can Do MS, said, “What we are seeing, and this survey confirms, is a growing population of people with MS and support partners who are working to manage a chronic, unpredictable disease that affects their daily lives as well as their ability to envision what the future holds.”
Dr. Kalb’s concern is “that too many of these individuals and families are not accessing what they need – whether it’s access to accurate, up-to-date information, MS specialty care, essential medications, or emotional support. The greatest concern this survey highlights is that too many MS patients are living without the information and resources they need.”
Health care teamwork means one-stop shopping
This is more than a doctor-patient problem. The concerns reported in this survey highlight the need for a health care teamwork for people with MS. A couple of years ago, my fellow Multiple Sclerosis News Today columnist Laura Kolaczkowski called it “one-stop shopping.” In other words, the ability of someone with MS to coordinate with a neurologist on medical problems, a physical therapist for mobility concerns, an occupational therapist for home and workplace modifications and a social worker financial and transportation help.
I’d add to that list an expert in employment law. The National Multiple Sclerosis Society adds other medical professionals to its patient-centered MS comprehensive care dream team.
Comprehensive care should start with the neurologist. He or she is the person who has the information needed to bring together, and make available, all of these resources But that means the doctor must believe that comprehensive care is a necessary part of patient care and devote time and resources to it. Far too few are willing to do this.
Is comprehensive care just my wishful thinking? In the words of John Lennon, “You may say I’m a dreamer. But (I certainly hope) I’m not the only one.”
(A version of this post first appeared as my column on the MS News Today website).
