Open Door - May 2010 pages 4-5
- Mums and MS
- Keep taking the medicine?
- Impact of MS on employment
- New MRI techniques reveal more detail
Mums and MS
Two recent studies have explored the effect of MS on different aspects of women's lives.
One study looked for any effect of pregnancy and childbirth on progression of MS over an 18 year period. The researchers explored how long it took from onset of MS to reach a level of disability where a walking aid was needed. Women who had given birth at any point in time - either before or after the onset of MS - were 34% less likely to reach this stage of disability than childless women with MS.
These results could suggest that having children slows down the progression of MS. However, it's possible that women who had worse MS at the start of the study were less likely to choose to have children after diagnosis, either because they didn't feel well enough or because they worried about their ability to cope with bringing up children.
The study does show that being pregnant or having children is unlikely to make MS worse, and may slow down the rate at which MS gets worse.
D'hooghe MB, et al.
Long-term effects of childbirth in MS.
Journal of Neurology Neurosurgery and Psychiatry 2010;81:38-41.
Fatigue can be a debilitating symptom that affects many aspects of life. Yet there is little research on how maternal fatigue in MS affects parenting.
American researchers compared the impact of fatigue on three groups of mums. 103 mothers with MS, 68 with rheumatoid arthritis and 91 with no long-term condition rated their fatigue, depression, quality and quantity of sleep, dealing with the typical daily hassles of parenting, discipline styles and monitoring of child whereabouts.
Surprisingly, for mums with MS, higher levels of fatigue did not affect frequency or severity of clashes with children. The number of children in the family and poor sleep had a bigger influence on the escalation of exchanges.
For mothers with rheumatoid arthritis or no long-term condition, increased fatigue resulted in increased hassles. Higher levels of fatigue had a significant effect on monitoring child whereabouts for all three groups.
The researchers suggest that mothers with MS have learned to deal with persistent, often debilitating fatigue by adjusting their expectations about parenting or their parenting style and that children may spot the effect of fatigue on their mother and adjust their behaviour to create fewer hassles for her.
White CP, et al.
Maternal fatigue and its relationship to the caregiving environment.
Families Systems and Health 2009; 27:325-345.
Keep taking the medicine?
Adherence is the term used to describe how closely someone follows medical advice, such as routinely taking medication. Levels of adherence to disease modifying treatments (DMT) and the impact on relapse rates and use of healthcare resources were gathered over a three year period. 1,606 people were classified as either adherent (took 85% or more of their DMT) or non-adherent (took less than 85% of their DMT). Overall, a low level of adherence was found: during the study period, people took on average 72 to 76% of their medication, with only 27-41% of participants in each year considered adherent and only 4% adherent for the full three year period. Those who were adherent tended to have a lower risk of relapses over the three years. Adherence in one year also tended to be associated with a lower risk of requiring emergency treatment or hospital admissions in the following year.
The data suggest that low adherence can lead to increased relapse rates and increased use of hospital resources. However, other studies have also shown that experiencing relapses while on DMT can lead to reduced adherence.
Steinberg SC, et al.
Impact of adherence to interferons in the treatment of multiple sclerosis: a nonexperimental, retrospective, cohort study.
Clinical Drug Investigation 2010;30:89-100.
Impact of MS on employment
Two large surveys of people with MS, performed four years apart (2003 and 2007) in Australia, collected information about employment rates. 1,135 people completed the first survey, 1,329 the second and 667 completed both. Over the four year period, for the group completing both questionnaires, there was a 5.4% loss of employment. By 2007, 56% had lost employment due to MS.
A major finding was that people with MS were losing employment mainly because of disabling symptoms, rather than because of 'workplace' factors such as inflexibility of working conditions or being sacked. Symptoms most often linked to actual or perceived risk of employment loss were fatigue, mobility-related symptoms, arm and hand difficulties and cognitive problems. The researchers recommend early, supported disclosure of diagnosis to employers so that appropriate adjustments can be discussed.
In the UK, the Disability Discrimination Act requires employers to consider making 'reasonable adjustments' to make sure employees with MS are not put at substantial disadvantage by employment arrangements or physical features of the workplace.
[The Disability Discrimination Act was replaced by the Equality Act in October 2010]
Simmons RD, et al.
Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management
Journal of Neurology 2010;257(6):926-936.
The economic impact of loss of employment has been highlighted in a Danish study. 2,538 people diagnosed with MS between 1980 and 1989 were compared to a group drawn from the general population. Five years after diagnosis, the likelihood of taking early pension was 30% for people with MS compared to 3% for the general population. At 20 years, the gap had widened still further, with the risk of taking early pension 78% for people with MS vs 14% for the general population. Those people with MS that remained in work had almost the same income as the general population. However, for those taking early pension, income over time was significantly lower. The authors conclude that MS seriously affects the economic life of people with MS, even within a few years of onset.
Pfleger CC, et al.
Social consequences of multiple sclerosis (1): early pension and temporary unemployment - a historical prospective cohort study.
Multiple Sclerosis 2010;16:121-126.
New MRI techniques reveal more detail
MS is generally considered as affecting white matter of the brain and spinal cord. White matter is composed of bundles of nerve axons; the white appearance results from the myelin coating of axons. However, an increasing number of studies have shown that grey matter, which consists mostly of nerve cell bodies, is also affected and that this may have equal or even greater significance for the changes seen in MS. MRI machines used for diagnosis use a large tubular magnet which generates a magnetic field of 1.5 Tesla (the international unit of measurement of magnetic strength). This magnetic field is not strong enough to detect changes in the grey matter.
Recent research represents a breakthrough in the study of the brain in MS by MRI techniques. Very powerful 9.4 Tesla MRI has been used to reveal grey matter lesions with great accuracy in postmortem MS brain tissue. Details seen in the MRI scans have been confirmed and correlated with details seen under the microscope with more conventional tissue staining.
The next step will be to translate these results into live studies using high field magnetic resonance imaging (eg 3 Tesla and 7 Tesla). This will help us understand brain changes in MS and provide much more detailed tools for assessing the effects of potential treatments.
Schmierer K, et al.
High field (9.4 Tesla) magnetic resonance imaging of cortical grey matter lesions in multiple sclerosis.