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MS research update - What support do people with MS need? - 22 December 2014

Summary

No two people with MS will have exactly the same set of symptoms and so the needs for people with MS are complex and wide ranging as everyone's MS is different. The study aimed to examine how people with MS felt about the education about symptom management, psychological services and peer support services available to them and if they felt well supported and informed.

2,805 people with MS in Australia completed a questionnaire that examined their needs and satisfaction with the services available to them.

The study found that age, gender and symptom severity influenced satisfaction with, and need for, support services. Overall there was an unmet need for peer support and a greater variety of support services. The younger and female participants were particularly more likely to feel they required a wider variety of support services to meet their needs, including in different formats, not just face to face and for them to be available at a wider range of times too.

For those participants moderately and more severely affected by their MS symptoms they highlighted they had a greater need and were less satisfied with the symptom management and psychological services available to them.

The authors conclude that the data from this study may help shape appropriate support structures, to ensure they are relevant, useful and that people with MS are well supported by them.

Background

MS is a chronic but fluctuating condition, the symptoms experienced depend on the position and extent of the scarring or lesions within the central nervous system and on how much damage has occurred. So no two people with MS will have exactly the same set of symptoms and this means that the needs for people with MS are complex and wide ranging as everyone's MS is different. The study aimed to examine how people with MS felt about the education about symptom management, psychological services and peer support services available to them and if they felt well supported and informed.

How this study was carried out

A questionnaire was sent to 3,502 people with MS in Australia. The questionnaire was specifically designed for this survey and examined a range of needs for people with MS and their families including education about symptom management, psychological services and peer support services. For each question participants were asked to rate their response on a scale of 1 to 3, with one being the lowest score and 3 being the highest, a not applicable option was also provided.

2,805 participants completed the study. They were aged between 19 and 92 years old, 79% were female and 21% male. Based on the responses to the Disease Steps scale, a measure of disability similar to the EDSS, the researchers divided the participants into one of three groups depending on how severely they were affected by their MS. 48% were in the mild symptom group (scores, 0 to 2), 37% were in the moderate symptom group (scores 3 to 5) and 15% were in the severe symptom group (scores 6 to 8).

The questionnaires were analysed to see if responses differed by gender, age and symptom severity.

What was found

The study found that for peer support there was an overall unmet need and there was a clear need for a greater variety of support services. The younger and female participants were particularly more likely to feel they required a wider variety of support services to meet their needs, including in different formats, not just face to face and for them to be available at a wider range of times too.

For those participants moderately and more severely affected by their MS symptoms they highlighted they had a greater need and were less satisfied with the symptom management and psychological services available to them.

What does it mean?

The study shows that age, gender and symptom severity influence satisfaction with, and need for, support services. The researchers suggest that particular areas of need include counselling, services for those with more severe symptoms, and better peer support groups namely for women, younger people and people with mild symptoms of MS. The authors conclude that the data from this study may help shape appropriate support structures, to ensure they are relevant, useful and that people with MS are well supported by them.

McCabe MP, Ebacioni KJ, Simmons R , et al.
Unmet education, psychological and peer support needs of people with multiple sclerosis..
J Psychosom Res. 2015 Jan;78(1):82-7.
abstract
Read the full text of this paper

More about support

Decisions about life, treatment and how best to self-manage symptoms are very personal decisions to make. As well as considering the issues themselves or with family or friends, some people may find it helpful to discuss these issues with other people with first hand experience of MS. Different people will find different sources of support useful.

Some people like to meet other people with MS to discuss issues face to face. There are groups that meet around the UK for people with MS to meet and talk together. Other people are more comfortable with the distance provided by talking to people online. There is an ever growing range of website, blogs, discussion groups, Facebook pages, Twitter and other online sites where people with MS can share experiences and ask questions.

If you need other support, including home help or emotional support, each service is set up differently, if you are not sure what is available in your area or who to call, your GP or your MS nurse should be able to help and point you in the right direction for other local services. If you are not sure who your MS nurse is, you can look them up on our map of local services and MS specialist centres.

Our new information sheet Sources of information and support suggests a wide range of options that may be helpful, including print, online, by phone and face to face. This can be read online, downloaded as a pdf or ordered as a printed version.

Research by topic areas...

Assessment tools

Roberg BL, Bruce JM, Feaster HT, et al.
Speedy eye movements in multiple sclerosis: Association with performance on visual and nonvisual cognitive tests.
J Clin Exp Neuropsychol. 2014 Dec 10:1-15. [Epub ahead of print]
abstract

Causes of MS

Evangelopoulos ME, Koutsis G, Markianos M.
Serum leptin levels in treatment-naive patients with clinically isolated syndrome or relapsing-remitting multiple sclerosis.
Autoimmune Dis. 2014;2014:486282.
abstract
Read the full text of this paper

Co-existing conditions

lemenzi A, Pompa A, Casillo P, et al.
Chronic pain in multiple sclerosis: is there also fibromyalgia? An observational study.
Med Sci Monit. 2014 May 9;20:758-66.
abstract
Read the full text of this paper

Disease modifying treatments

Ramagopalan S, Wasiak R, Cox AP.
Using Twitter to investigate opinions about multiple sclerosis treatments: a descriptive, exploratory study.
F1000Res. 2014;3:216.
abstract
Read the full text of this paper

Thomas RH, Wakefield RA.
Oral disease-modifying therapies for relapsing-remitting multiple sclerosis.
Am J Health Syst Pharm. 2015 Jan 1;72(1):25-38.
abstract

Voloshyna N, Havrdová E, Hutchinson M, et al.
Natalizumab improves ambulation in relapsing-remitting multiple sclerosis: results from the prospective TIMER study and a retrospective analysis of AFFIRM.
Eur J Neurol. 2014 Dec 15. [Epub ahead of print]
abstract

Stieger M, Schmid JP, Yawalkar N, et al.
Extracorporeal shock wave therapy for injection site panniculitis in multiple sclerosis patients.
Dermatology. 2014 Dec 5. [Epub ahead of print]
abstract

Economics

Hamid R, Loveman C, Millen J, et al.
Cost-effectiveness analysis of onabotulinumtoxinA (BOTOX(®)) for the management of urinary incontinence in adults with neurogenic detrusor overactivity: a UK perspective.
Pharmacoeconomics. 2014 Dec 20. [Epub ahead of print]
abstract
Read the full text of this paper

Lizán L, Comellas M, Paz S, et al.
Treatment adherence and other patient-reported outcomes as cost determinants in multiple sclerosis: a review of the literature.
Patient Prefer Adherence. 2014;8:1653-64.
abstract
Read the full text of this paper

Other

Gottberg K, Chruzander C, Einarsson U, et al.
Health-related quality of life in partners of persons with MS: a longitudinal 10-year perspective.
BMJ Open. 2014 Dec 16;4(12):e006097.
abstract
Read the full text of this paper

Other treatments

Lugaresi A.
Pharmacology and clinical efficacy of dalfampridine for treating multiple sclerosis.
Expert Opin Drug Metab Toxicol. 2014 Dec 16:1-12. [Epub ahead of print]
abstract

Paediatric MS

Waldman A, Ghezzi A, Bar-Or A, et al.
Multiple sclerosis in children: an update on clinical diagnosis, therapeutic strategies, and research.
Lancet Neurol. 2014 Sep;13(9):936-48.
abstract

Pathophysiology

Raphael I, Webb J, Stuve O, et al.
Body fluid biomarkers in multiple sclerosis: how far we have come and how they could affect the clinic now and in the future.
Expert Rev Clin Immunol. 2014 Dec 18:1-23. [Epub ahead of print]
abstract

David MA, Tayebi M.
Detection of protein aggregates in brain and cerebrospinal fluid derived from multiple sclerosis patients.
Front Neurol. 2014;5:251.
abstract
Read the full text of this paper

Pregnancy and childbirth

Carvalho AT, Veiga A, Morgado J, et al.
Multiple sclerosis and motherhood choice: an observational study in Portuguese women patients.
Rev Neurol. 2014 Dec 16;59(12):537-542. Spanish, English.
abstract

Prognosis

Kerbrat A, Hamonic S, Leray E, et al.
Ten-year prognosis in multiple sclerosis: a better outcome in relapsing-remitting patients but not in primary progressive patients.
Eur J Neurol. 2014 Dec 16. [Epub ahead of print]
abstract

Kontschieder P, Dorn JF, Morrison C, et al.
Quantifying progression of multiple sclerosis via classification of depth videos.
Med Image Comput Comput Assist Interv. 2014;17(Pt 2):429-37.
abstract

Schlaeger R, Papinutto N, Panara V, et al.
Spinal cord gray matter atrophy correlates with multiple sclerosis disability.
Ann Neurol. 2014 Oct;76(4):568-80.
abstract

Psychological aspects

Senders A, Sando K, Wahbeh H, et al.
Managing psychological stress in the multiple sclerosis medical visit: Patient perspectives and unmet needs.
J Health Psychol. 2014 Dec 19. [Epub ahead of print]
abstract

Hartoonian N, Terrill AL, Beier ML, et al.
Predictors of anxiety in multiple sclerosis.
Rehabil Psychol. 2014 Dec 15. [Epub ahead of print]
abstract

Rannisto M, Rosti-Otajärvi E, Mäntynen A, et al.
The use of goal attainment scaling in neuropsychological rehabilitation in multiple sclerosis.
Disabil Rehabil. 2014 Dec 12:1-8. [Epub ahead of print]
abstract

Rehabilitation

Street T, Taylor P, Swain I.
The effectiveness of functional electrical stimulation on walking speed, functional walking category and clinically meaningful changes for people with multiple sclerosis.
Arch Phys Med Rehabil. 2014 Dec 10. [Epub ahead of print]
abstract

Self-management

Wilski M, Tasiemski T, Kocur P.
Demographic, socioeconomic and clinical correlates of self-management in multiple sclerosis.
Disabil Rehabil. 2014 Dec 16:1-6. [Epub ahead of print]
abstract

Tabuteau-Harrison SL, Haslam C, Mewse AJ.
Adjusting to living with multiple sclerosis: The role of social groups.
Neuropsychol Rehabil. 2014 Dec 15:1-24. [Epub ahead of print]
abstract

Symptoms and symptom management

Heenan M, Scheidt RA, Woo D, et al.
Intention tremor and deficits of sensory feedback control in multiple sclerosis: a pilot study.
J Neuroeng Rehabil. 2014 Dec 19;11(1):170. [Epub ahead of print]
abstract
Read the full text of this paper (PDF)

DeLuca GC, Yates RL, Beale H, et al.
Cognitive impairment in multiple sclerosis: clinical, radiologic and pathologic insights.
Brain Pathol. 2015 Jan;25(1):79-98.
abstract

Vitamin D

Pakpoor J, Ramagopalan S.
Evidence for an association between vitamin D and multiple sclerosis.
Curr Top Behav Neurosci. 2014 Dec 13. [Epub ahead of print]
abstract

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