There’s a Lack of Communication by Multiple Sclerosis Healthcare Providers, Study Indicates

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Lack of communication by MS healthcare providers

New research from England indicates that healthcare providers do not communicate enough with their patients about the possible outcomes for their multiple sclerosis (MS).

The study, How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study, appeared in the journal PLoS One.

People with MS and their families may feel that there is a lack of education and information from their healthcare providers about the possible consequences of the disease. This can make it difficult to plan for the future and possibly induce stress due to uncertainty.

The research team, led by Laura Dennison of the Academic Unit of Psychology, University of Southampton in England, wanted to collect information on how healthcare providers communicate with their MS patients about the disease prognosis. The scientists asked 15 people with MS to fill out in-depth interviews, then used a technique called thematic analysis to examine the content of the interviews.

A total of six themes recurred during the interviews, including: unsatisfactory communication with healthcare providers, issues of uncertainty associated with MS-disease outcomes, and problems with accepting that uncertainty. Many patients felt confused about their future and wanted to stay focused on the present. Several of the participants reported that healthcare providers discussed their MS prognosis only minimally.

Overall, the researchers concluded that “[Healthcare providers] must carefully consider whether, when, and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited [Healthcare providers]-patient communication, distinguish predictors of patients’ attitudes towards prognostication, and identify circumstances under which prognostic forecasting benefits patients.”

The study indicated that communication about MS prognosis is an area that deserves further study. However, the study analysis was highly qualitative and only included a small number of participants. Additional work on the topic of healthcare provider communication about MS disease outcomes would be beneficial for further informing clinicians about optimal MS treatment.

Clinical guidelines from the National Institute of Clinical Excellence encourage open and honest communication between healthcare providers and people with MS, although there is a lack of specific recommendations. In particular, clinicians may need further guidance and training about how to speak with MS patients about the possible long-term effects of their disease.

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  1. Phil Longford says:

    My diagnosis was “You have MS. Probably PPMS, because of age, and being male. Probably got 10 years!” I still do not know what the consultant meant by that last comment. Wheel-chair? Dead? Although the consultant is obviously clever, he had the bedside manner of The Grim Reaper. Fortunately, the following day I met, for the first time, my MS nurse. She was far more helpful and informative. I felt the consultant assumed that there was nothing he could do, for MS patients, and was far more interested in ‘proper’ patients, with ‘interesting’ illnesses, such as Motor Neurone. Fortunately, we have the nearby Samson MS Centre. Takes a bit of getting used to, but discussing MS with people who either have MS, or deal with MS patients on a daily basis, is the great way to try to combat this annoying illness, or at least cope with it!

  2. Dale Rawson says:

    I had loud ringing in my ears so I talked about it to my GP and he send me to an ear specialist and he sent me for an MRI. I want to get the results from the MRI and the doctor told me that I had to go for another one because they something and wanted to take another look at at this point you should have said bring somebody with you when you get the results or send the results to my GP of 26 years I’ve only met that ear doctor 3 times then he told me that I have MS and that somebody will get ahold of you. My wife’s mother passed away from ALS so when do your doctor told me you have MS the little gerbil in my brain was running around what does this mean, how about 4 months earlier had won a trip to Puerto Vallarta set to leave in about 6 weeks now I’m in a conundrum how do I tell my wife cuz I had MS and ALS all mixed together so I didn’t tell her for 3 weeks I kept up the facade until the knot to got that too big. Cuz the doctor didn’t tell me to bring somebody you or go to my GP and him tell me I would have saved myself $100,000 because they went out and and traded in my Mazda 3 for a new car Mazda CX5 and move Financial stuff around to lower interest rates but all that did was void the disability insurance I had on everything and you really can’t see a doctor in Canada so I’m Sol and playing catch-up. So I’m going to letter to the doctors I won’t be able to get nothing from them but maybe they can say tell people to bring somebody with them so they don’t suffer from this news by themselves.

  3. GARY L SHAMBLEN says:

    Yes I agree about the Neuro/Patient communication issue. In the 15 yrs. after being diagnosed I have seen 4 different Neuros. After experiencing empty promises, morbid personality, seeing P.A.s instead of the real thing(kind of like Dorothy going to see the Wizard of Oz), I’ve come to the conclusion about all they are doing is keeping records on us. I finally found a Dr. that does listen to me, which is important. My family Dr. prescribed Vit.B-Complex and D-3 which helped and prescribes P.T. at my request. I’m PPMS, but it has been very slow fortunately. Had first attack in 1982, next in 1991, then in 2000, and got the Dx in 2001. Just take the meds., mostly for pain, and continue on. That has now been 34 yrs. and rely mostly on my own experience.

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