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MS research update - Disclosing diagnosis of MS helps at work - 25 November 2013

Summary

This study looked at what effect disclosing a diagnosis of MS had on staying in work generally but also on staying in the same job.

They found that people who disclosed their diagnosis to their employer were more likely to still be working two years later. This was still true even after taking into account age, gender, the number of hours worked and the level of disability.

Those who disclosed their diagnosis were more likely to stay in the same job. On average, they stayed in the same job for just over three years longer.

Background

Deciding when to disclose a diagnosis of MS to managers and colleagues at work can be a dilemma. Some people worry that disclosing their diagnosis could lead to them being treated as less able or even to them being discriminated against. On the other hand, waiting too long to disclose the diagnosis, could mean that it is too late to get support that would have helped work to continue as effectively as possible.

This research looked at what effect disclosing a diagnosis of MS had on staying in work.

How this study was carried out

The Australian Multiple Sclerosis Longitudinal Study (AMSLS) is a large national sample of people with MS in Australia. 2,949 participants, aged 18 to 65, were sent a questionnaire each year for three years. The questionnaire asked about:

  • employment status
  • MS symptoms using the MS Disease Steps scale which allows a person to report the impact of their MS
  • age, gender other demographic information

Anyone who replied saying that they were employed, was asked:

  • when they had disclosed their diagnosis, whether this had occurred in the current workplace and, if so, whether disclosure was made before or during the current employment
  • what their perception was about disclosing their diagnosis by choosing one of the following:
    • Disclosure of MS in the workplace is often a negative experience leading to discrimination, loss of one's position and/or career advancement.
    • Disclosure of MS in the workplace is often a positive experience leading to a clearer understanding of one's needs by others and greater workplace support and adjustments when they are needed.
    • Disclosure in the workplace is usually irrelevant to one's employment conditions of career outcomes.

What was found

A total of 1,438 people responded to surveys in all three years. Of these, 946 were employed at the time of the first survey and 673 went on to complete surveys in both of the following two years. These 673 responses were used for the analysis in this research. 564 people remained employed at the time of the third survey.

In year one, the average age of this group was 47 and just over eight out of ten (83%) were women. About half (46%) were working full time and half (54%) were part time. On average, they had held the same job for nine years. In year three, 84% were still working with 40% full time and 44% part time. The average number of hours worked per week remained almost the same (27 hours).

In both years, just over two thirds reported a mild level of disabilty, about a third had a moderate level and very few had severe disability.

The researchers found that people who disclosed their diagnosis to their employer were more likely to still be working in year three. This was still true even after taking into account age, gender, the number of hours worked and the level of disability.

Out of the 564 participants still employed in year three, 42% reported positive employer attitudes, just over a quarter (27%) reported negative employer attitudes leading to discrimination, and just under a third (31%) were neutral in their response.

Those who disclosed their diagnosis were more likely to stay in the same job. On average, they stayed in the same job for over just three years longer.

What does it mean?

The authors comment that this is the first evidence that telling an employer about diagnosis with MS has a positive impact. Although experiences varied, disclosure of diagnosis meant that people were more likely to stay employed and more likely to stay in the same job suggesting a positive experience for the person with MS and for their employer.

Kirk-Brown A, Van Dijk P, Simmons R, et al.
Disclosure of diagnosis of multiple sclerosis in the workplace positively affects employment status and job tenure.
Mult Scler. 2013 Nov 21. [Epub ahead of print]
abstract

More about working with MS

Telling people about diagnosis with MS

Disclosing a diagnosis of MS can be a relief for all concerned especially if people have been wondering what's happening or if they've misunderstood symptoms as being due to something else.

Some people choose to tell their manager and close colleagues only, for example, if MS is having an impact on their work or if they will need adjustments to the working environment or time off for appointments.

Most people will not be required to disclose their diagnosis to their employer unless there could be health and safety risks that could result from the effects of MS symptoms. Examples of people who may have to disclose their diagnosis include people who drive passenger or goods vehicles. It is best to check your contract to be sure.

Some people choose not to disclose especially if symptoms are having no impact on their work.

Working with MS

You can read more about working with MS in the MS Trust's At work with MS resource.

There is a range of people and organisations that can support people with MS in the workplace including occupational therapists, disability employment advisors and Access to work. Many of them will provide support to employers too.

Research by topic areas...

Diagnosis

 Morris G, Maes M.
Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics.
BMC Med. 2013 Sep 17;11:205.
abstract
Read the full text of this paper

Symptoms and symptom management

Flachenecker P, Henze T, Zettl UK.
Spasticity in patients with multiple sclerosis - clinical characteristics, treatment and quality of life.
Acta Neurol Scand. 2013 Nov 20. [Epub ahead of print]
abstract

Kallweit U, Baumann CR, Harzheim M, et al.
Fatigue and sleep-disordered breathing in multiple sclerosis: a clinically relevant association?
Mult Scler Int. 2013
abstract
Read the full text of this paper

Nagaraj K, Taly AB, Gupta A, et al.
Prevalence of fatigue in patients with multiple sclerosis and its effect on the quality of life.
J Neurosci Rural Pract. 2013 Jul;4(3):278-82.
abstract
Read the full text of this paper

Hoang PD, Gandevia SC, Herbert RD.
Prevalence of joint contractures and muscle weakness in people with multiple sclerosis.
Disabil Rehabil. 2013 Nov 18. [Epub ahead of print]
abstract

Disease modifying treatments

Freedman MS.
Treatment options for patients with multiple sclerosis who have a suboptimal response to interferon-β therapy.
Eur J Neurol. 2013 Nov 15. [Epub ahead of print]
abstract

Drugs in development

Brunetti L, Wagner ML, Maroney M, et al.
Teriflunomide for the treatment of relapsing multiple sclerosis: a review of clinical data.
Ann Pharmacother. 2013 Sep;47(9):1153-60.
abstract

Venci JV, Gandhi MA.
Dimethyl fumarate (Tecfidera): A new oral agent for multiple sclerosis.
Ann Pharmacother. 2013 Oct 23. [Epub ahead of print]
abstract

Williams T, Coles A, Azzopardi L.
The outlook for alemtuzumab in multiple sclerosis.
BioDrugs. 2013 Jun;27(3):181-9.
abstract

Other treatments

Mathiesen HK, Sorensen PS.
Prolonged-release fampridine improves walking in a proportion of patients with multiple sclerosis.
Expert Rev Neurother. 2013 Dec;13(12):1309-17.
abstract

Co-existing conditions

Elemek E, Almas K.
Multiple sclerosis and oral health--an update.
J Mich Dent Assoc. 2013 Oct;95(10):28-31, 56.
abstract

Lubelski D, Abdullah KG, Alvin MD, et al.
Clinical outcomes following surgical management of coexistent cervical stenosis and multiple sclerosis: A cohort controlled analysis.
Spine J. 2013 Nov 12. [Epub ahead of print]
abstract

Assessment tools

Xia Z, Secor E, Chibnik LB, et al.
Modeling disease severity in multiple sclerosis using electronic health records.
PLoS One. 2013 Nov 11;8(11)
abstract
Read the full text of this paper

Causes of MS

Lunny CA, Fraser SN, Knopp-Sihota JA.
Physical trauma and risk of multiple sclerosis: a systematic review and meta-analysis of observational studies.
J Neurol Sci. 2013 Aug 15. [Epub ahead of print]
abstract

Vitamin D

Hatamian H, Bidabadi E, Saadat SM, et al.
Is serum vitamin D levels associated with disability in patients with newly diagnosed multiple sclerosis?
Iran J Neurol. 2013;12(2):41-6.
abstract
Read the full text of this paper

Psychological aspects

Moghadasi AN, Owji M.
Can multiple sclerosis as a cognitive disorder influence patients' dreams?
Iran J Neurol. 2013;12(2):75-6.
abstract
Read the full text of this paper

Physical activity

Sá MJ.
xercise therapy and multiple sclerosis: a systematic review.
J Neurol. [Epub ahead of print]
abstract

Prognosis

Fahrbach K, Huelin R, Martin AL, et al.
Relating relapse and T2 lesion changes to disability progression in multiple sclerosis: a systematic literature review and regression analysis.
BMC Neurol. 2013 Nov 19;13(1):180. [Epub ahead of print]
abstract
Read the full text of this paper (PDF)

Marques IB, Matias F, Silva ED, et al.
Risk of multiple sclerosis after optic neuritis in patients with normal baseline brain MRI.
J Clin Neurosci. 2013 Aug 23. [Epub ahead of print]
abstract

Provision of care

Lorefice L, Mura G, Coni G, et al.
What do multiple sclerosis patients and their caregivers perceive as unmet needs?
BMC Neurol. 2013 Nov 15;13(1):177. [Epub ahead of print]
abstract
Read the full text of this paper (PDF)

Bone health

Ayatollahi A, Mohajeri-Tehrani MR, Nafissi S.
Factors affecting bone mineral density in multiple sclerosis patients.
Iran J Neurol. 2013;12(1):19-22.
abstract
Read the full text of this paper

Moghaddasi M, Aghaei M.
ssessment of bone densitometry in Iranian patients with multiple sclerosis: a case-control study.
Iran J Neurol. 2013;12(1):9-14.
abstract
Read the full text of this paper

Turkoski B.
Your client has multiple sclerosis: understanding the challenge.
Orthop Nurs. 2013 Jan-Feb;32(1):45-50.
abstract

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