MS Information Update no 46 - January 2010
The criteria for inclusion of papers in MS Information Update are relevance to MS management issues, currency and references appearing in publications to which nurses and other health professionals may not have ready access.
If you would like copies of any of these papers, please contact info@mstrust.org.uk, ring us on 01462 476700 or write to us at MS Trust, Spirella Building, Letchworth Garden City, Herts SG6 4ET quoting the Information Update number (above), the item number(s) and your postal address.
We can only accept requests from within the United Kingdom.
We ask for a donation of £1.00 per paper ordered to help cover the costs of the Information Service.
Blaney BE, Lowe-Strong A.
The impact of fatigue on communication in multiple sclerosis. The insider's perspective.
Disabil Rehabil 2009;31(3):170-180. [Ref. 4804]
In-depth interviews of 10 people with MS who experienced fatigue highlighted three major themes: revealing communication changes; concealing and coping; and barriers to participation. Authors highlight the importance that health professionals recognise the impact fatigue may have on communication and include examples of probe questions appropriate for each theme.
Barlow J, Turner A, Edwards R, et al.
A randomised controlled trial of lay-led self-management for people with multiple sclerosis.
Patient Educ Couns 2009;77(1):81-89. [Ref. 4762]
A randomised controlled trial comprising an intervention group and waiting-list control group was used to determine the impact of the expert patient programme on people with multiple sclerosis. Participants completed baseline questionnaires and all participants were assessed at four and 12 months. Results showed that the expert patient programme had an impact on self-management, self-efficacy and physical status as measured on MSIS. Trends towards improvement in depression and MS self-efficacy were also found and all improvements were maintained at 12 months. Authors conclude that the expert patient programme provides some small positive effects for people with MS and may be of value for people with mild anxiety or depression who need extra support. Attendance early in the disease course was recommended.
Boggild M, Palace J, Barton P, et al.
Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with historical comparator.
BMJ 2009;339;b4677. [Ref. 4812]
Analysis of 4749 patients with relapsing remitting MS receiving treatment with interferon beta or glatiramer acetate in accordance with guidelines produced by the Association of British Neurologists to determine cost effectiveness of treatment. Concludes that any cost effectiveness of disease modifying treatments cannot be reached from this initial interim analysis but highlights the complexities of modelling a long-term condition like multiple sclerosis and the need for additional comparator datasets.
Casetta I, Riise T, Nortvedt MW, et al.
Gender differences in health-related quality of life in multiple sclerosis.
Mult Scler 2009;15(11)1339-1346. [Ref. 4811]
Questionnaire study of 370 people with MS (105 men, 265 women) found lower quality of life compared to the general population and that this was inversely proportional to disability as measured by EDSS. The impact of disability on quality of life was higher for men than women and this was particularly marked at higher levels of disability for quality of life measures relating to mental health. The authors conclude that the impact of disability is greater on men, particularly for mental well-being and suggest that interventions should to be gender specific in order to better meet individuals' needs.
Coyle PK, Foley JF, Fox EJ, et al.
Best practice recommendations for the selection and management of patients with multiple sclerosis receiving natalizumab therapy.
Mult Scler 2009:15(S4);S26-36. [Ref. 4813]
Recommendations based on US prescribing information and clinical practice address: appropriate patient selection for natalizumab; routine monitoring and management of adverse events during therapy; clinical vigilance and risk reduction for progressive multifocal leukoencephalopathy.
Embrey N.
Exploring the lived experience of palliative care for people with MS, 3: views of group support.
Br J Neurosci Nurs 2009;5(9):402-408. [Ref. 4789]
In-depth interviews with nine people with MS who used palliative day care services highlighted group support in this setting as a strong feature. Themes that emerged from analysis included: commonalities and friendship, understanding, feeling relaxed, positive and self-confident. Patients likened the group to an extended family and found that it addressed the social isolation experienced before the programme began and common to people with more advanced MS.
Fragoso YD, Da Silva EO, Finkelsztejn A.
Correlation between fatigue and self-esteem in patients with multiple sclerosis.
Arqu Neuropsiquiatr 2009;67(3b):818-821. [Ref. 4806]
30 people with MS and EDSS <3.5 and without moderate or severe depression/anxiety were assessed for both levels of fatigue and levels of self-esteem. Low self-esteem was shown to be linked to greater levels of fatigue but did not appear to be associated with any other factors such as age, gender, physical disability, length of MS duration, number of relapses, depression or anxiety. The authors conclude that chronic conditions such as MS can interfere with the way an individual views and values themselves and highlights the possible importance of evaluating self-esteem.
Fernandez-Luque L, Elahi N, Grajales FJ.
An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis.
Stud Health Technol Inform 2009;150:292-296. [Ref. 4787]
Study analysed 25 of the 769 multiple sclerosis patient generated videos on YouTube. Personal health information contained in the videos was examined and, whilst of low prevalence, this was found to contain detailed user information which could constitute a risk to privacy and which may have implications beyond current ethical paradigms. The difficulty of deleting information, particularly user comment was identified and the importance of adhering to health information quality standards when creating content on the internet highlighted.
Haslam C.
Management options for bladder dysfunction in patients with multiple sclerosis.
Nurs Times 2009;105(40):24-27. [Ref.4814]
This Practice Review of bladder dysfunction in MS addresses the assessment and investigation of symptoms and the medication, physical intervention and surgical management options available.
Hughes CM, Smyth S, Lowe-Strong AS.
Reflexology for the treatment of pain in people with multiple sclerosis: a double-blind randomised sham-controlled clinical trial.
Mult Scler 2009;15(11):1329-1338. [Ref. 4817]
73 people with MS were randomly assigned to one of two groups; one group receiving reflexology; and one group receiving placebo treatment (where sessions involved a general foot massage) for a period of ten weeks. Pain intensity rated by participants significantly decreased in both groups after ten sessions. Authors concluded that either both treatments were effective and the results were due to the general rather than specific stimulatory effects of massage; or the improvements seen were the result of a 'placebo effect' in both groups.
Kasser S.
Exercising with multiple sclerosis: insights into meaning and motivation.
Adapt Phys Act Q 2009;26(3):274-289. [Ref.4805]
Phenonomenological study of 12 adults with MS who attended exercise programmes two to three times per week over one year. Three major themes emerged from the analysis which aimed to explore the motivational basis that contributed to exercise involvement; exercising to maintain function and health, enhanced exercise self-efficacy, and feelings of hope and optimism. Authors suggest that participation in exercise provided a mirror for self-reflection and participants appreciated the support of others in the context of the changing nature of MS. This also provided a venue where people could learn about their own strengths, needs and capabilities.
Khan F, Pallant JF, Shea TL, et al.
Multiple sclerosis: prevalence and factors impacting bladder and bowel function in an Australian community cohort.
Disabil Rehabil 2009; 31(19):1567-1576. [Ref. 4802]
73 people who took part in the study; two-thirds experienced urinary frequency, half reported urinary incontinence, and 14% reported bowel incontinence. When asked to describe how they were affected by urinary problems, 31% described the emotional impact, 22% explained that it prevented them from doing household chores and 28% said it deterred them from participating in physical activities. The results of the study further emphasise the importance of effective identification and management of continence problems in people with MS.
Keenan E.
Spasticity management, part 2: choosing the right medication to suit the individual.
Br J Neurosci Nurs 2009;5(9):419-424. [Ref. 4788]
Article considers the importance of treatment goals agreed in partnership with the patient, family and carer and examines available antispasmodic treatments with regard to half-life, side effects, route of absorption and practical applications relevant to the clinical setting. Highlights the importance of monitoring and the value of input from community teams, patients and their families during titration of medication to achieve effective dosage.
La Mantia L.
Headache and multiple sclerosis: clinical and therapeutic correlations.
Neurol Sci 2009;30:S23-26. [Ref. 4785]
Literature review cites studies showing that headaches are experienced in the MS population up to 50% more frequently than in the general population and may occur both at onset and throughout the course of MS. Current evidence suggesting increased prevalence of headache in the MS population and potential associations between headache, clinical characteristics of MS and disease modifying drug therapies is explored and authors highlight the possible impact of headache on quality of life in these patients.
Myhr KM.
Vitamin D treatment in multiple sclerosis.
J Neurol Sci 2009;286(1-2):104-108. [Ref. 4800]
Epidemiological evidence on the influence of vitamin D on MS susceptibility and clinical disease activity are examined. Author concludes that more studies are required to determine optimal dose and serum level for vitamin D, target populations and optimal timing for intervention.
Nocentini U, Tedeschi G, Migliaccio R, et al.
An exploration of anger phenomenology in multiple sclerosis.
Eur J Neurol 2009;16(12);1312-1317. [Ref. 4816]
Study of 195 people included 150 with relapsing remitting MS; 45 with progressive forms and 140 healthy controls. Three aspects of anger were measured: Anger Out - anger directed towards other people or objects; Anger In - anger that is withheld or directed towards oneself; and Anger Control - anger that is expressed or dissolved in a controlled manner. Findings demonstrated that people with MS experienced twice the normal level of withheld anger and significantly lower levels of controlled anger. Authors suggest that the unique anger characteristics of people with MS are due to central nervous system damage rather than an emotional reaction to the stress of MS.
Kappos L, Freedman MS, Polman CH, et al.
Long-term effect of early treatment with interferon beta-1b after a first clinical event suggestive of MS: 5-year active treatment extension of the phase 3 BENEFIT (Betaferon in newly emerging multiple sclerosis for initial treatment) trial.
Lancet Neurol 2009;8(11):987-97. [Ref. 4796]
The original 2-year BENEFIT trial, investigated the effect of starting interferon beta 1b after a clinically isolated event (CIS). At the end of five years, the study findings indicated that earlier treatment with interferon beta 1b reduced the risk of conversion from CIS to clinically definite MS by 37%. However, at the end of the five years there was no significant difference between the two groups in terms of the level of disability progression as assessed by EDSS. Authors conclude that delaying treatment by two years had no significant effect. This study throws open the debate about the benefits of starting disease modifying drug treatment after CIS.
Plow MA, Mathiowetz V, Lowe DA.
Comparing individualised rehabilitation to a group wellness intervention for persons with multiple sclerosis.
Am J Health Promot 2009;24(1):23-26. [Ref. 4805]
50 people with MS were divided between two groups either: health education, which consisted of seven classes, or individualised physical rehabilitation, which consisted of four physical therapy sessions plus three telephone calls. Participants completed questionnaires and were assessed for physical fitness and activity before and after the study. Both group classes and individualised therapy were effective in improving health and physical activity. The results also show that participants may benefit more physically from individualised physical rehabilitation and more mentally from group health education. The authors conclude that interventions combining both approaches might be most effective for people with multiple sclerosis.
Sanders J.
Analysis of the impact of the NHS and social care model on patients with multiple sclerosis.
Br J Neurosci Nurs 2009;5(11):502-507. [Ref. 4815]
Highlights the current low level of commissioning of services for people with MS and the failure of the commissioning model, which was heavily infludenced by US managed care and has not translated well to the UK system. Author suggests that whilst the recently developed commissioning pathway for MS should lead to improvements in commissioning, the recruitment of community matrons and reduction of MS specialist nurse posts will negatively impact on care.
Schyns F, Paul L, Finlay K, et al.
Vibration therapy in multiple sclerosis: a pilot study exploring its effects on tone, muscle force, sensation and functional performance.
Clin Rehabil 2009;23(9):771-781. [Ref. 4793]
Researchers compared the effects of an exercise programme with the same exercises done on a vibrating platform in 12 people with MS over a three month period. The results showed small improvements in both groups but failed to demonstrate that vibration therapy provided any additional benefit. Comments from the participants were generally positive with people reporting fewer spasms at night, better sleep, improved ability to climb stairs and better sensation in their feet.
Temlett H, Yousefi M, Devonshire V, et al.
Impact of multiple sclerosis relapses on progression diminishes with time.
Neurology 2009;73(20):1616-1623. [Ref. 4801]
Study examined the relationship between relapses and long-term disability based on the medical records of 2,477 people diagnosed with a relapsing onset of MS. Data spanned an average period of 20 years and analysis found that people who had a relapse within five years of onset had a significantly greater risk of needing to use a walking aid in the short-term than those who did not experience a relapse within five years of onset. Earlier relapses did not appear to have a significant impact over the long-term. People who had experienced relapses earlier in the course of the condition were likely to experience a similar level of disability as those who had experienced relapses later in the course of the condition.
If you would like copies of any of these papers, please contact info@mstrust.org.uk, ring us on 01462 476700 or write to us at MS Trust, Spirella Building, Letchworth Garden City, Herts SG6 4ET.
