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MS research update - Learning from the experience of others - 11 January 2013

Self-management is a broad concept covering the skills you develop for taking care of yourself which might include living in a healthy way by changing your diet and increasing exercise, learning how MS affects you and what affects your MS, working with health professionals and others to get the best out of drugs and other treatments as well as planning for and adapting to changes in your circumstances.

People who have lived with MS for many years can provide valuable insights into coping with the condition from day to day, yet few studies have drawn on this experience. This study set out to explore how older people who had lived with MS for more than 20 years had learnt to manage their MS and to identify the things that had helped and hindered them over the years.

How this study was carried out

18 people aged over 55 who had lived with MS for more than 20 years were interviewed. Transcripts of the interviews were analysed and recurring themes identified.

What was found

Participants described their diagnosis, their life experience with MS and how they eventually came to terms with their MS, adapted and moved towards self-management.

Specific words and phrases spoken at the time of diagnosis influenced people for many years, emphasising how important it is for health professionals to communicate in a sensitive way at this stage.

Fear and uncertainty were replaced with growing knowledge and confidence in managing "their MS". Through trial and error, learning from friends with MS, books, and advice from health professionals, participants became expert in managing their MS.

Some took on an active self-management role early, while others described a more gradual process. A one size fits all approach did not match participants' experience of living with MS; strategies to solve problems were highly individual.

What does it mean?

This study gives us a better understanding of how people learn to live with MS over a life time and will help to guide the timing, structure and content of MS self-management courses.

Ploughman M, Austin MW, Murdoch M, et al.
The path to self-management: a qualitative study involving older people with multiple sclerosis.
Physiother Can. 2012 Winter;64(1):6-17.
abstract
full text of article

More about self-management

MS and me
A self-management guide to living with MS

Contains practical strategies including setting goals, problem solving and healthy living, explores how to better understand your symptoms and how working in partnership with health professionals can ensure that you make decisions and treatment choices that are right for you.

Research by topic areas...

Symptoms and symptom management

Oreja-Guevara C, González-Segura D, Vila C.
Spasticity in multiple sclerosis: results of a Spanish patient survey.
Int J Neurosci. 2013 Jan 9. [Epub ahead of print]
abstract

Feenaughty L, Tjaden K, Benedict RH, et al.
Speech and pause characteristics in multiple sclerosis: A preliminary study of speakers with high and low neuropsychological test performance.
Clin Linguist Phon. 2013 Feb;27(2):134-51.
abstract

Castel-Lacanal E, Gamé X, De Boissezon X, et al.
Impact of intermittent catheterization on the quality of life of multiple sclerosis patients.
World J Urol. 2013 Jan 6. [Epub ahead of print]
abstract

Siniscalchi A, Gallelli L, De Sarro G.
Effects of topiramate on dysaesthetic pain in a patient with multiple sclerosis.
Clin Drug Investig. 2013 Jan 4. [Epub ahead of print]
abstract

Koffman BM, Khuder S, Mutgi S, et al.
Impact of oral health in patients with multiple sclerosis and epilepsy: a survey in a neurology clinic.
Spec Care Dentist. 2012 Jul-Aug;32(4):150-4.
abstract

Disease modifying treatments

Oleen-Burkey M, Cyhaniuk A, Swallow E.
Treatment patterns in multiple sclerosis: administrative claims analysis over ten years.
J Med Econ. 2013 Jan 9. [Epub ahead of print]
abstract

Kappos L, O'Connor PW, Polman CH, et al.
Clinical effects of natalizumab on multiple sclerosis appear early in treatment course.
J Neurol. 2013 Jan 5. [Epub ahead of print]
abstract

Grytten N, Aarseth JH, Espeset K, et al.
Health-related quality of life and disease-modifying treatment behaviour in relapsing-remitting multiple sclerosis - a multicentre cohort study.
Acta Neurol Scand Suppl. 2012;(195):51-7.
abstract

Yousry TA, Pelletier D, Cadavid D, et al.
Magnetic resonance imaging pattern in natalizumab-associated progressive multifocal leukoencephalopathy.
Ann Neurol. 2012 Nov;72(5):779-87.
abstract

Creeke PI, Farrell RA.
Clinical testing for neutralizing antibodies to interferon-β in multiple sclerosis.
Ther Adv Neurol Disord. 2013 Jan;6(1):3-17.
abstract
full text of article

Stankiewicz JM, Kolb H, Karni A, et al.
Role of immunosuppressive therapy for the treatment of multiple sclerosis.
Neurotherapeutics. 2012 Dec 28. [Epub ahead of print]
abstract

Stephenson JJ, Kern DM, Agarwal SS, et al.
Impact of natalizumab on patient-reported outcomes in multiple sclerosis: a longitudinal study.
J. Health Qual Life Outcomes. 2012 Dec 27;10(1):155. [Epub ahead of print]
abstract

Other treatments

Skovgaard L, Nicolajsen PH, Pedersen E, et al.
Use of complementary and alternative medicine among people with multiple sclerosis in the Nordic countries.
Autoimmune Dis. 2012;2012:841085.
abstract

Etemadifar M, Sayahi F, Abtahi S, et al.
Ginseng in the treatment of fatigue in multiple sclerosis: a randomized placebo-controlled double-blind pilot study.
Int J Neurosci. 2013 Jan 9. [Epub ahead of print]
abstract

Wergeland S, Torkildsen O, Bø L, et al.
Polyunsaturated fatty acids in multiple sclerosis therapy.
Acta Neurol Scand Suppl. 2012;(195):70-5.
abstract

Karussis D, Shor H, Yachnin J, et al.
T cell vaccination benefits relapsing progressive multiple sclerosis patients: a randomized, double-blind clinical trial.
PLoS One. 2012;7(12):e50478. Epub 2012 Dec 14.
abstract
full text of article

Epidemiology

Kampman MT, Aarseth JH, Grytten N, et al.
Sex ratio of multiple sclerosis in persons born from 1930 to 1979 and its relation to latitude in Norway.
J Neurol. 2013 Jan 6. [Epub ahead of print]
abstract

Torkildsen O, Grytten N, Aarseth J, et al.
Month of birth as a risk factor for multiple sclerosis: an update.
Acta Neurol Scand Suppl. 2012;(195):58-62.
abstract

Midgard R.
Incidence and prevalence of multiple sclerosis in Norway.
Acta Neurol Scand Suppl. 2012;(195):36-42.
abstract

Myhr KM, Grytten N, Aarseth JH., et al.
The Norwegian multiple sclerosis registry and biobank.
Acta Neurol Scand Suppl. 2012;(195):20-3.
abstract

Andersen O.
From the Gothenburg cohort to the Swedish multiple sclerosis registry.
Acta Neurol Scand Suppl. 2012;(195):13-9.
abstract
full text of article

Koch-Henriksen N, Stenager E, Laursen B.
The use of epidemiological multiple sclerosis registers in research: the Danish MS Registry.
Acta Neurol Scand Suppl. 2012;(195):7-12.
abstract

Myhr KM, Grytten N, Torkildsen O, et al.
A need for national registries and international collaborative research in multiple sclerosis.
Acta Neurol Scand Suppl. 2012;(195):1-3.
abstract

Arikanoglu A, Shugaiv E, Tüzün E, et al.
Impact of cigarette smoking on conversion from clinically isolated syndrome to clinically definite multiple sclerosis.
Int J Neurosci. 2013 Jan 10. [Epub ahead of print]
abstract

Pugliatti M, Casetta I, Drulovic J, et al.
A questionnaire for multinational case-control studies of environmental risk factors in multiple sclerosis (EnvIMS-Q).
Acta Neurol Scand Suppl. 2012;(195):43-50.
abstract

Rehabilitation

Taylor P, Humphreys L, Swain I.
The long-term cost-effectiveness of the use of Functional Electrical Stimulation for the correction of dropped foot due to upper motor neuron lesion.
J Rehabil Med. 2013 Jan 10.[Epub ahead of print]
abstract

Shafizadeh M, Platt GK, Mohammadi B..
Effects of different focus of attention rehabilitative training on gait performance in multiple sclerosis patients.
J Bodyw Mov Ther. 2013 Jan;17(1):28-34.
abstract

Burschka JM, Keune PM, Menge U, et al.
An exploration of impaired walking dynamics and fatigue in multiple sclerosis.
BMC Neurol. 2012 Dec 27;12(1):161. [Epub ahead of print]
abstract

Waschbisch A, Wenny I, Tallner A, et al.
Physical activity in multiple sclerosis: a comparative study of vitamin D, brain-derived neurotrophic factor and regulatory T cell populations.
Eur Neurol. 2012;68(2):122-8.
abstract

Quality of life

Yamout B, Issa Z, Herlopian A, et al.
Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis.
Eur J Neurol. 2013 Jan 8. [Epub ahead of print]
abstract

Vitamin D

Holmøy T, Torkildsen O, Myhr KM, et al.
Vitamin D supplementation and monitoring in multiple sclerosis: who, when and wherefore.
Acta Neurol Scand Suppl. 2012;(195):63-9.
abstract

Carers

McCurry MK.
An exploratory study of decision making by informal caregivers of individuals with multiple sclerosis.
J Neurosci Nurs. 2013 Feb;45(1):52-60.
abstract

Psychological aspects

Anhoque CF, Biccas-Neto L, Domingues SC, et al.
Cognitive impairment is correlated with reduced quality of life in patients with clinically isolated syndrome.
Arq Neuropsiquiatr. 2013 Jan 8. [Epub ahead of print]
abstract

Chen H, Habermann B.
Ready or not: planning for health declines in couples with advanced multiple sclerosis.
J Neurosci Nurs. 2013 Feb;45(1):38-43.
abstract
full text of article

Sundgren M, Maurex L, Wahlin A, et al.
Cognitive impairment has a strong relation to nonsomatic symptoms of depression in relapsing-remitting multiple sclerosis.
Arch Clin Neuropsychol. 2013 Jan 4. [Epub ahead of print]
abstract

Economics

Yamamoto D, Campbell JD.
Cost-effectiveness of multiple sclerosis disease-modifying therapies: a systematic review of the literature.
Autoimmune Dis. 2012;2012:784364.
abstract

Maercker A, Perkonigg A, Preisig M, et al.
The costs of disorders of the brain in Switzerland: an update from the European Brain Council Study for 2010.
Swiss Med Wkly. 2013 Jan 7;143:0.
abstract

Provision of care

Williams L, O'Riordan S, McGuigan C, et al.
A web-based electronic neurology referral system: a solution for an overburdened healthcare system?
Ir Med J. 2012 Oct;105(9):301-3.
abstract

Pregnancy and childbirth

Lu E, Zhao Y, Zhu F, et al.
Birth hospitalization in mothers with multiple sclerosis and their newborns.
Neurology. 2013 Jan 9. [Epub ahead of print]
abstract

Self-management

D'hooghe MB, Nagels G, De Keyser J, et al.
Self-reported health promotion and disability progression in multiple sclerosis.
J Neurol Sci. 2013 Jan 4. [Epub ahead of print]
abstract

Chronic cerebro-spinal venous insufficiency

Alroughani R, Lamdhade S, Thussu A.
Endovascular treatment of chronic cerebro-spinal venous insufficiency in multiple sclerosis: A retrospective study.
Int J Neurosci. 2013 Jan 9. [Epub ahead of print]
abstract

Simka M, Ludyga T, Kazibudzki M, et al.
Multiple sclerosis, an unlikely cause of chronic cerebrospinal venous insufficiency: retrospective analysis of catheter venography.
JRSM Short Rep. 2012 Aug;3(8):56. Epub 2012 Aug 17.
abstract

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