You are here:

MS research update - What do people severely affected by MS need? - 27 May 2014

Summary

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. Some symptoms may have a larger impact on one person's life than it would for another and many measures of the impact of MS, tend to focus on the physical symptoms and so this study sought to ask people who feel they are severely affected by MS what they felt they needed.

The researchers received 573 completed questionnaires from people with MS who said they felt they were severely affected. The questions covered areas such as social and family support, access to care, medical care, nursing, rehabilitation and quality of life. Of these 573 people, 358 (63%) felt highly severely affected by MS. This group found the stress on their next of kin to be higher than in those who were less severely affected by MS. The highly severely affected group also did not have a permanent neurologist, did not see their neurologist on a regular basis, were in greater need of home visits and also needed more emotional support.

The study shows that for people who feel severely affected by MS there are several areas where care and support could be improved. The authors conclude that the data from this study may help shape appropriate support structures which are centred on the person with MS. They suggest that these services should be integrated and with a multidisciplinary approach, linking experts in neurology and rehabilitation, to best support people with MS and their relatives, to improve care and wellbeing.

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.

Some symptoms may have a larger impact on one person's life than for another, due to their individual experiences and circumstances and activities they want and need to do. For example some people may feel that physical symptoms have a larger impact on their lives whereas others may feel more severely affected by cognitive symptoms. Many measures of the impact of MS, tend to focus on the physical symptoms and so this study sought to ask people who feel they are severely affected by MS what they felt they needed.

How this study was carried out

The researchers invited people with MS to participate in the study via an advert placed in a newsletter from the German Multiple Sclerosis Society. To be included in the study people with MS only needed to report that they felt severely affected by MS, there were no other criteria that had to be met. A total of 867 people responded to the advert and were sent a questionnaire. 573 (66%) completed questionnaires were returned. Analysis of postcodes showed that participants were distributed across Germany, were aged between 20 and 83 years and two thirds (67%) were female. 40% had secondary progressive MS, 20% primary progressive MS and 23% relapsing remitting MS, the remaining 17% did not specify their diagnosis.

The main questionnaire was specifically designed for this survey and included questions on social and family support, access to care, medical care, nursing, rehabilitation, co-therapies (e.g., occupational therapy, physical therapy, speech therapy), psychological support and quality of life. Participants were also asked to complete three additional questionnaires, that are well used in studies such as this. These were the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS), the Consultation and Relational Empathy (CARE) which examines the doctor–patient interaction and the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT–Sp).

The questionnaire pack included a question where participants could rate how affected they felt by MS on a scale from 1 (less strongly severely affected) to 10 (totally affected). Based on these responses the researchers divided the participants into two groups. Group 1 felt highly severely affected, scoring between 7 and 10. Group 2 felt less severely affected and rated their affectedness as below 7. This is a subjective measure, as it is based on how the person felt the MS impacted on them. Other studies have used objective assessments of how severe a persons MS is, such as the EDSS, which is an assessment performed by a health professional. These tend to focus on physical capabilities and difficulties and so do not tend to consider other factors such as changes in social life, relationships and independence which may been more relevant and important aspects to a particular person. This study sought to address this problem by asking the participants about their own feelings.

What was found

The study found that of the 573 respondents, 358 (63%) felt highly severely affected by MS (Group 1). This group reported the stress on their next of kin to be higher than in Group 2 who were less severely affected by MS. Group 1 also did not have a permanent neurologist, did not see their neurologist on a regular basis, were in greater need of home visits and also needed more emotional support.

What does it mean?

The study shows that for people who feel severely affected by MS there are several areas where care and support could be improved. There was agreement that in those people feeling more affected there was a need for more, as well as better, care.

As MS is a chronic but fluctuating condition, the needs for people with MS are complex and wide ranging. The authors suggest that the inability to alter disease progression is sometimes interpreted as "there is nothing more that can be done". They say this is precisely the reason why health professionals must initiate whatever steps are necessary to alleviate symptoms and offer appropriate support, as there are things that can be done.

The authors conclude that the data from this study may help shape appropriate support structures which are centred on the person with MS. They suggest that these services should be integrated and with a multidisciplinary approach, linking experts in neurology and rehabilitation, to best support people with MS and their relatives, to improve care and wellbeing.

Strupp J, Golla H, Galushko M, et al.
Self-rating makes the difference: Identifying palliative care needs of patients feeling severely affected by multiple sclerosis..
Palliat Support Care. 2014 May 22:1-8. [Epub ahead of print]
abstract
Read the full text of this paper

More about gaining support

As everyone's MS is different, the symptoms you have and the impact they have on your life are individual to you. You may feel that you are severely affected if the symptoms are having a large impact on your life. If you have relapsing remitting MS, you may be taking a disease modifying treatments and you may see a neurologist or your MS nurse on a regular basis, for a drug check up or when you have a relapse, where you can discuss symptoms. If your MS has not been changing for a while, or you have primary progressive MS or secondary progressive MS, you may find you are not been seen by a health professional as regularly.

Although the current disease modifying treatments available, work principally through reducing the rates of relapses, there are also a wide variety of other treatments available to reduce the impact of particular symptoms. So whatever symptoms you may have and no matter how mild or severe they may be, it is likely that there will be something out there that is suitable for you, to help you manage or treat that symptom. This could be a medication, a device such as Functional electrical stimulation (FES) or a therapy, such as physiotherapy.

If you have not had an appointment with your neurologist for a long while, ask for one. Things may have changed since your last appointment, these could be changes in your symptoms as well as in the types of treatments that are available. You may find that something can now be done for something you may have struggled with for a while. Your neurologist could also refer you on to other services which may help you, including physiotherapy or the continence service, if you are having trouble with your bladder or your bowels.

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.

For family and friends who may be supporting you, there are various resources and other organisations available to support them, and in turn help them to best support you.

Research by topic areas...

Assessment tools

Cardozo L, Staskin D, Currie B, et al.
Validation of a bladder symptom screening tool in women with incontinence due to overactive bladder.
Int Urogynecol J. 2014 May 24. [Epub ahead of print]
abstract

Van Schependom J, D'hooghe MB, Cleynhens K, et al.
The Symbol Digit Modalities Test as sentinel test for cognitive impairment in multiple sclerosis.
Eur J Neurol. 2014 May 22. [Epub ahead of print]
abstract

Disease modifying treatments

Carruthers RL, Rotstein DL, Healy BC, et al.
An observational comparison of natalizumab vs. fingolimod using JCV serology to determine therapy.
Mult Scler. 2014 May 22. [Epub ahead of print]
abstract

Kawalec P, Mikrut A, Wiśniewska N, et al.
The effectiveness of dimethyl fumarate monotherapy in the treatment of relapsing-remitting multiple sclerosis: a systematic review and meta-analysis.
Curr Neuropharmacol. 2014 May;12(3):256-68.
abstract

Tuohy O, Costelloe L, Hill-Cawthorne G, et al.
Alemtuzumab treatment of multiple sclerosis: long-term safety and efficacy.
J Neurol Neurosurg Psychiatry. 2014 May 21. [Epub ahead of print]
abstract

Hoepner R, Havla J, Eienbröker C, et al.
Predictors for multiple sclerosis relapses after switching from natalizumab to fingolimod.
Mult Scler. 2014 May 19. [Epub ahead of print]
abstract

Mokhber N, Azarpazhooh A, Orouji E, et al.
Cognitive dysfunction in patients with multiple sclerosis treated with different types of interferon beta: A randomized clinical trial.
J Neurol Sci. 2014 Feb 4. [Epub ahead of print]
abstract

Prognosis

Jawahar R, Oh U, Eaton C, et al.
Association between smoking and health outcomes in postmenopausal women living with multiple sclerosis.
Mult Scler Int. 2014;2014:686045.
abstract
Read the full text of this paper

Psychological aspects

Koch MW, Patten S, Berzins S, et al.
Depression in multiple sclerosis: A long-term longitudinal study.
Mult Scler. 2014 May 22. [Epub ahead of print] 
abstract

Ensari I, Motl RW, Pilutti LA.
Exercise training improves depressive symptoms in people with multiple sclerosis: Results of a meta-analysis.
J Psychosom Res. 2014 Jun;76(6):465-71. 
abstract

MS relapses

Benedict RH, Morrow S, Rodgers J, et al.
Characterizing cognitive function during relapse in multiple sclerosis.
Mult Scler. 2014 May 19. [Epub ahead of print]
abstract

Symptoms and symptom management

Utomo E, Groen J, Blok BF.
Surgical management of functional bladder outlet obstruction in adults with neurogenic bladder dysfunction.
Cochrane Database Syst Rev. 2014 May 24;5:CD004927. [Epub ahead of print]
abstract
Read the full text of this paper

Tecchio F, Cancelli A, Cottone C, et al.
Multiple sclerosis fatigue relief by bilateral somatosensory cortex neuromodulation.
J Neurol. 2014 May 23. [Epub ahead of print]
abstract

Malik MT, Healy BC, Benson LA, et al.
Factors associated with recovery from acute optic neuritis in patients with multiple sclerosis.
Neurology. 2014 May 21. [Epub ahead of print]
abstract

Year: 2016

December 2016

November 2016

July 2016

May 2016

April 2016

March 2016

February 2016

January 2016

Year: 2015

December 2015

November 2015

October 2015

May 2015

April 2015

March 2015

February 2015

January 2015

Year: 2014

December 2014

November 2014

October 2014

September 2014

August 2014

July 2014

June 2014

May 2014

April 2014

March 2014

February 2014

January 2014

Year: 2013

December 2013

November 2013

October 2013

September 2013

August 2013

July 2013

June 2013

May 2013

April 2013

March 2013

February 2013

January 2013

Year: 2012

December 2012

November 2012

October 2012

September 2012

August 2012

July 2012

June 2012

May 2012

April 2012

March 2012

February 2012

January 2012

Print this page