Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy

[GoatHerder]

The Govt can figure out how much provigil helps soldiers be alert on assignment, why not an mser trying to just live best life, stay employed, be active???

I tried Provigil for a couple of months a few years ago. It did nothing to improve my energy level.

[Pistachio]

Well said, SueBee.

[Suebee]

Uggh, another self reported survey about how much fatigue sucks for MSers . Doctors/ scientists PLEASE move the examination to reproducible evidence based data on how much interventions improve it: use time walked test, identified weekly task/work accomplished, ability to stay employed or care for children, cognitive testing, timed peg hole test, number of safely performed sit to stand in time frame, ability to shower, dress, and not take a nap. All of this could be gathered on a self reported survey, if cost / funding of study isn’t available. And let’s quantify amount of pharmaceutical intervention... there is only antidotal info on how much mg provigil helps, unless you’re a special ops .... really. The Govt can figure out how much provigil helps soldiers be alert on assignment, why not an mser trying to just live best life, stay employed, be active???

[Pistachio]

GoatHerder......I get it. I'm lucky enough to work in my husband's office (he's a Chiropractor). Our office is open two full days and two half days a week. I'm DONE by Thursday. And, this takes into account the days that, between patients, I close my eyes for a few minutes. We don't work Fridays so I nap Fri, Sat, Sun every week. So far I've been able to function on this schedule. But as the week goes on I feel the fatigue building.

[GoatHerder]

Active in taking care of my farm and livestock, my energy level pretty is at zero by about 2pm. I start my day at 5am, and after 2pm, it's laying in bed with my computer, tending my multiple web sites and chatting with followers on twitter. When I was active with Covid, I was done trying to get anything done after 10am!

[Pistachio]

Fatigue. Gah! I don't think those without MS understand the level of fatigue. I understand why it's so often pwMS have to stop working.

[MSLazarus]

The dominant fatigue I am dealing with right now is brain fatigue. I am still farming and whole body fatigue is problematic but relieved by sleep. So I started taking Ritalin. I had a doc once who asked what I meant exactly when I said I was tired. If I meant one thing I could try provigil and if I meant my brain was tired I could try Ritalin. I used it for some time when I was still teaching.

so I started again to help me follow a thought all the way to the end of the sentence! Seems to be helping. I feel alert again. Anyone else using Ritalin for brain fatigue?

[ActiveMSers]

Fatigue is by far and away #1. Few people understand just how debilitating it can be....

[ActiveMSers]

J Neurol Sci
. 2021 Apr 9;426:117437.
doi: 10.1016/j.jns.2021.117437. Online ahead of print.

Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy

Carolyn A Young ¹, Roger Mills ², David Rog ³, Basil Sharrack ⁴, Tahir Majeed ⁵, Cris S Constantinescu ⁶, Seema Kalra ⁷, Timothy Harrower ⁸, Helen Santander ⁹, Gillian Courtald ¹⁰, Helen L Ford ¹¹, John Woolmore ¹², Alan Tennant ¹³

• PMID: 33991718
• DOI: 10.1016/j.jns.2021.117437

Abstract


Background and objective: Quality of life in multiple sclerosis (MS) reflects complex relationships between symptoms (fatigue, spasticity pain, and bladder or vision dysfunction), disability, health perceptions, and self-efficacy.

Methods: In this cross-sectional study, a self-report questionnaire pack of patient reported outcome measures was collected from 5695 people with MS (pwMS) alongside clinical data from their neurologists. Each patient reported outcome measure was converted to interval-scaled estimates following fit to the Rasch model. The patient reported outcome measures, as well as perceived health, age, disease subtype and gender, were then subject to path analysis to analyse their relationships with quality of life (QoL), guided by the Wilson and Clearly conceptual framework.

Results: The final model explains 81.2% of the variance of QoL. Fatigue is clearly dominant, suggesting a means to intervene and improve QoL. The next most influential factors were disability and self-efficacy, which have similar effect levels. The model can be replicated for pwMS on disease modifying therapy and is largely invariant for gender and disease subtype. Age had an insignificant effect.

Conclusions: In order to promote better QoL, MS care should include management of fatigue, interventions to ameliorate disability, and support to enhance self-efficacy. The range of skills needed for these treatments will require input from medical, nursing, therapy and psychology staff, so these findings provide evidence substantiating the need for pwMS to be provided with care by comprehensive multidisciplinary teams.