Among MS Patients, ‘Invisible’ Disability Leads to Poor Self-perceived Health, NYU Study Finds

Among MS Patients, ‘Invisible’ Disability Leads to Poor Self-perceived Health, NYU Study Finds

Pain, walking problems and fatigue are factors that most strongly lower self-perceived health in multiple sclerosis (MS), researchers at the New York University Langone Medical Center have found.

This challenges current treatment approaches focus mainly on physical disability. It suggests that “invisible disability” may be more important to how patients perceive their health.

The NYU study, “Which symptoms contribute the most to patients’ perception of health in multiple sclerosis?” appeared in the Multiple Sclerosis Journal — Experimental, Translational and Clinical.

The research team noted that while treatment in MS always aim to prevent disability, patients might see things differently.

“From a more patient-centric perspective, however, the goal may be better defined as ‘preserving the sense of health,’ broadly understood as ‘a state of complete physical, mental and social wellbeing,” researchers wrote, noting that a negative view of one’s health leads to a higher risk of death.

NYU researchers recruited 1,865 MS outpatients. The group was rather characteristic of MS patients in general; 68 percent were women and 78 percent had the relapsing-remitting form of MS. Patients were 46 years old on average, and had been ill for an average 13 years.

Researchers assessed symptom severity and general health using SymptoMScreen (SyMS) and a World Health Organization-validated questionnaire. They also used a self-reported questionnaire — Patient Determined Disease Steps (PDDS) — to measure global neurological impairment.

Results showed that patients had an average disability level in between “moderate disability” and “early gait disability” on the PDDS scale. The average self-reported health score was 2.3, which translated to something in between “good” and “moderate.” Only 1 percent of patients assessed their health as “very bad,” while 7 percent said it was “bad.”

 

The vast majority scored their health either as “moderate,” (32 percent) or “good” (41 percent). Another 19 percent said they were in “very good” health.

More severe symptoms were, not surprisingly, linked to poorer perceived health. An analysis suggested that gait difficulties, spasticity, fatigue, cognition, pain, depression and anxiety hurt perceived health, while vision, sensory symptoms, bladder problems and hand function did not have a significant impact.

Importantly, pain was the strongest predictor of poor self-reported health. Walking difficulties and fatigue came next, demonstrating that invisible or subjective disease symptoms may affect self-perceived health to a high degree.

3 comments

  1. Linda Fitch says:

    Yes! As a 17 year MS sufferer I agree. I can battle other symptoms, but when my pain, and fatigue are not controlled I may as well be dead. MS patients need chronic pain medication!

  2. Beth says:

    I agree. Pain and fatigue are unbearable most of the time. I feel that even with all the meds I am on it’s not enough to be able to manage most days. I have tried so many different MS meds over the past 13 yrs. The symptoms I live with daily are burning pain from my waist to the bottom of my feet as if ACID has been poured thru me along with pins & needles, stabbing pain along with temperature changes in my legs from burning to feeling like frost bite. Curing MS is so important but helping the pain is crucial for now.

  3. Beth says:

    Pain + fatigue are so draining physically as well as mentally. 13 yrs of MS but the past 6 has been pain, fatigue, falling, agony as if Acid is being poured from my waist down. The symptoms are awful and a pain Med that works would be terrific. I want a cure for MS but also something for pain for now.

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