Monday, 11 September 2017

#GuestPost & #ClinicSpeak: the burden of hidden disabilities in MS

Can we afford not to challenge physical disability as the primary outcome measure in MS trials? #ClinicSpeak #GuestPost

Summary: This study shows that hidden symptoms, in particular, pain, contributed most to pwMS perception of health. The invisible disability associated with MS is more important to patients’ sense of well-being than physical disability. 

Which symptoms contribute the most to patients’ perception of health in multiple sclerosis? To answer this question we surveyed 1,865 persons with MS who were seen for routine care at two large tertiary MS centres in the New York metropolitan area. Each PwMS was asked to rate his health on a scale of 1-5 (‘In general, how would you rate your health today? Very good (1) – Good (2) – Moderate (3) – Bad (4) – Very bad (5)), and fill out symptoMScreen. SymptoMScreen asks patients to rate their symptom severity in 11 domains commonly affected by MS: mobility, dexterity, vision, fatigue, cognition, bladder function, sensory, spasticity, pain, depression, and anxiety. 


Image from the MS Trust; Invisible symptoms: the unseen side of MS.

Before reading the results, I would ask you, gentle reader, to stop and ask yourself which symptoms would you rank as being the most impactful on PwMS perception of their health? What would be in your ‘top 3’? The answer from our study was somewhat unexpected: the domain that contributed the most to the perception of health in MS was pain, followed by gait problems and then fatigue. Our work suggests that ‘invisible’ symptoms are as important, or perhaps even more important, to patients’ sense of well-being as the ‘physical disability’ visible to the examiner. These findings call into question the overwhelming emphasis on ambulation and physical disability as the primary, and often the only, outcome measure in clinical trials and observational studies of MS.


Biography: Ilya Kister, a graduate Mount Sinai School of Medicine, received neurologic training at Albert Einstein College of Medicine in New York and neuro-immunologic training at NYU Multiple Sclerosis Care Center under the mentorship of the late Prof. Joseph Herbert. Dr Kister divides his time between clinical responsibilities at the NYU and Barnabas MS Centers in the greater New York area, and clinical research. He has a special interest in optimizing/personalizing use of MS therapies, symptomatology of MS, and clinical and radiologic course of Neuromyelitis Optica. Dr Kister is Associate Professor of Neurology at the NYU School of Medicine and directs NMO Treatment and Research Program, as well as, MS Fellowship at NYU.

Green et al. Which symptoms contribute the most to patients’ perception of health in multiple sclerosis? MSJ First Published September 5, 2017.


Background: Multiple sclerosis is a polysymptomatic disease. Little is known about relative contributions of the different multiple sclerosis symptoms to self-perception of health.

Objectives: To investigate the relationship between symptom severity in 11 domains affected by multiple sclerosis and self-rated health.

Methods: Multiple sclerosis patients in two multiple sclerosis centers assessed self-rated health with a validated instrument and symptom burden with symptoMScreen, a validated battery of Likert scales for 11 domains commonly affected by multiple sclerosis. Pearson correlations and multivariate linear regressions were used to investigate the relationship between symptoMScreen scores and self-rated health.

Results: Among 1865 multiple sclerosis outpatients (68% women, 78% with relapsing–remitting multiple sclerosis, mean age 46.38 ± 12.47 years, disease duration 13.43 ± 10.04 years), average self-rated health score was 2.30 (‘moderate to good’). Symptom burden (composite symptoMScreen score) highly correlated with self-rated health (r = 0.68, P < 0.0001) as did each of the symptoMScreen domain subscores. In regression analysis, pain (t = 7.00), ambulation (t = 6.91), and fatigue (t = 5.85) contributed the highest amount of variance in self-rated health (P < 0.001).

Conclusions: Pain contributed the most to multiple sclerosis outpatients’ perception of health, followed by gait dysfunction and fatigue. These findings suggest that ‘invisible disability’ may be more important to patients’ sense of well-being than physical disability, and challenge the notion that physical disability should be the primary outcome measure in multiple sclerosis.


Disclosures: IK has served on scientific advisory boards for Biogen Idec and Genentech and has received research support from Guthy-Jackson Charitable Foundation, National Multiple Sclerosis Society, Biogen Idec, Serono, Genzyme, and Novartis.

9 comments:

  1. I can live with gait issues by using a cane, rollator or other assistive device but the constant neuropathic pain and spasticity are worse. Meds only do so much. Pain also prevents sound sleep which worsens fatigue.

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  2. Thank you. This confirms my own experience. Pain is much worse than fatigue.

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  3. Were cognitive symptoms not included? I am in an intellectually demanding job and had cognitive symptoms (re. attention, memory, multi-tasking) when first diagnosed which luckily have resolved due to good medication and me keeping my brain busy. But these symptoms had the greatest impact on my perception of health at the time and are what I most fear.

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  4. Pain is invisible to others except those very close to you and to Some health care professionals. So much subjectivity is hard to talk about on equal terms. I have my pain tolerance and you have yours. The smiley face chart in hospital are useless. I worry most about the smiling person with dreadful pain. Ever have someone ask if you have pain and the number? You say 10/10. They then mindlessly type 10 in the computer and go on. Blah. Blah. Meanwhile you are Screaming Inside. It hurts so bad. Grit your teeth as you learned from your hard working parents.

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  5. The pain caused by MS is horrible. It is and has been my only symptom since I was diagnosed 4 years ago. burning, tight, aching legs. It definitely has a big impact on the perception of my health.

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  6. my job involves standing still. This is very uncomfortable after 10 minutes or less. It contributes to my fatigue, especially cognitive fatiigue. The pain builds up until the compulsion to sit becomes overwhelming. I'm going through this whilst singing and following very important directions. I find it distressing and can't explain the discomfort, except to call it pain. So, yes, pain comes first.

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  7. Thank you for finally publishing an article about this. I am constantly trying to reconcile how the significant (and many different types of) pain can all simultaneously occur, and how as the neurological demands throughout the day increase, these pains increase to the point of it being excruciating and unbearable, unable to cope, sleep, function. On top of it all, the pain increases the more the mobility demands are put on my body, obviously. I can walk 10 feet like an athlete I once was, then it turns into the Frankenstein stagger, and then of course I cannot walk nor stand. Once I'm at a high level of neurological exhaustion, sleep is imperative, but unable to achieve as the brain malfunctions as well.
    In sum, this study hits home that pain is deeply reflective of the many, many issues that are wrong inside, representing a very poor sense of well being.

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  8. Interesting post thanks IK. Pain is horrible, the worst thing about MS by a long way. I've long since given up trying to explain, just smile and reply 'not bad thanks' when asked. I understand pain must improve as neurones die, in that a dead nerve is dead and conducts no signal, end of. Silver lining to late stage MS perhaps.

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  9. And yet, people still report being told by their MDs that pain is not a part of MS, despite numerous studies that document otherwise.
    I weep for the victims of these "doctors"

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