Read this Assessment Quiz, which asked patients and caregivers how well they’re managing their multiple sclerosis

The editorial team at Everyday Health, a sister company to MedPage Today, produced a Multiple Sclerosis Assessment Quiz, which asked patients and caregivers how well they’re managing their multiple sclerosis. We asked Rosalind Kalb, PhD, Vice President of Clinical Programs at the National MS Society, to respond to one of these findings.

Insight #3

We asked caregivers whether they had noticed any changes in themselves since their loved one’s diagnosis of MS, and 68% of the group responded that they feel more tired, have lost interest in hobbies and friends, and/or feel crabby or resentful of their loved one more often now that before the MS diagnosis.

We Asked Dr. Kalb: How do you counsel MS caregivers about the drain that MS places on their lives? What kind of help is available to them?

Dr. Kalb’s Response: MS caregivers are our “invisible patients”.¹ Their partner’s unpredictable symptoms, changing functional status, and uncertain future weigh on them from diagnosis onward—impacting their health, emotional well-being, and quality of life. And yet most are never asked by their loved one’s doctor how they’re doing, what life is like for them, whether or not the current treatment plan is manageable, or whether they need help. By not asking those questions, we convey that having needs of their own is somehow inappropriate or selfish.

I tell MS caregivers that the first step to being effective in the caregiving role is taking care of oneself, both physically and emotionally. I remind them that their own health is just as important and deserving of attention; that feelings of loss, anxiety, and frustration can become overwhelming if not talked about and dealt with; and that there’s no need for them to manage the challenges on their own.

Maintaining a balanced partnership—in which each partner is able to both give and receive—is essential for our visible and invisible patients. The National MS Society (800-344-4867) offers support for caregivers and helps them connect with valuable national and local resources.

Previously…

Insight #2

We asked patients to describe their MS-related symptoms. This is what we found:

We Asked Dr. Kalb: What advice do you offer these patients, who clearly have a huge burden of MS symptoms? What measures, other than adhering to their medication regimens, may help?

Dr. Kalb’s Response: The range of possible symptoms in MS can feel overwhelming. I remind people with MS that managing symptoms effectively is as important to comprehensive MS care as taking medications to manage relapses or modify the disease course. I encourage them to report new or worsening symptoms to their MS physician—even if they aren’t sure that the problems are caused by MS—so that the physician can diagnose the problem. If the symptom is MS-related, the doctor will recommend the appropriate medication, behavioral strategies, rehabilitation services, and/or assistive device(s) to help them manage the symptom and maintain function, comfort, and quality of life.

Some patients are reluctant to mention new symptoms that might signal disease progression. Others fear being labeled a “complainer” or disappointing the physician. Or they may be so overwhelmed by all their symptoms that they simply don’t know where to start. For this reason, healthcare providers need to encourage their patients to track their symptoms, report changes, and prioritize their questions and concerns at each visit. This will allow both doctor and patient to focus on the highest-priority needs and collaborate to identify effective interventions.

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