More and more people are using the internet and communicating electronically to help them manage their health. This includes through online communities and by using web based health education programmes.
Previous research had shown that the highest level of use of electronic communications in the general population was by young women and city dwellers. As MS is diagnosed most often between the ages of 20 and 40, and more often in women than men, the authors suggest that people with MS are a good target group in which to assess upcoming eHealth trends.
How this study was carried out
A questionnaire was developed to see what forms of electronic communication were used by people with MS and to gain an insight into what they might be happy to use in the future to communicate with their health care professionals.
The questionnaire contained 18 items that asked about how often and in what ways they used their PC, websites, email and mobile phone. It also aimed to estimate the skill level of that person. Examples included:
- Do you own a computer?
- Yes – I've got a shared computer access
- What do you regularly use your computer for? (Multiple answers possible)
- Word processing
- Browsing websites
- Getting information about MS
- Are you able to acquaint yourself quickly with a new computer program?
- Definitely applies to me
- Mostly applies to me
- Slightly applies to me
- Does not apply to me
The entire set of questions can be seen by clicking the link labeled "Multimedia Appendix 1" in this related research paper from the same group.
1096 people with MS completed the paper based questionnaire during a visit to one of a number of outpatient clinics in Germany between 2009 and 2010. The average age of participants was 42 and the average disease duration was nine years. Almost three quarters (71%) were women.
What was found
More than 9 out of ten people with MS owned a computer, a mobile phone and had regular access to the internet. Almost as many (88%) used a computer at least once a week. Similar numbers used the internet (88%), email (82%) and mobile phones (85%). 83% had the skill to acquaint themselves quickly with new software and six out of ten reported that they had installed new computer programs.
A much smaller number used text based chat (13%) or video based chat (8%). Over a third (42%) looked for information about MS on the internet.
What does it mean?
In the group studied, people with MS were generally familiar with modern communication technologies and had the skills to install and learn about new software. Four out of ten were already obtaining health information online.
The authors suggest that people with MS would have the technical skills to use information and communication technologies which may be developed in the future for medical management of MS. These might include electronic health records and patient/health professional relationship management systems.
Haase R, Schultheiss T, Kempcke R, et al.
Modern communication technology skills of patients with multiple sclerosis.
Mult Scler. 2013 Feb 6.[Epub ahead of print]
Related paper from the same group
Haase R, Schultheiss T, Kempcke R, et al.
Use and acceptance of electronic communication by patients with multiple sclerosis: a multicenter questionnaire study.
J Med Internet Res. 2012 Oct 15;14(5):e135.
Read the full text
More about obtaining health information
Having the right information at the right time can make a big difference to living with MS. Not all information on the internet is accurate or evidence based so it is important to have sources of information that can be trusted.The MS Trust provides a wide range of information about MS on its web site and in its publications. In 2011, the MS Trust was awarded the Information Standard which means that the way we produce information is:
We aim to provide information in a variety of ways to suit a range of needs.
Examples of publications that can be read both electronically and in printed form include:
- our newsletter Open Door
- our books including Primary Progressive MS, Working and studying with MS and Living well with MS.
Other resources are available only on the MS Trust web site including:
More interactive forms of electronic media include:
- The MS Trust Facebook page
- Follow us on Twitter
- Flickr where you can see photos of what our supporters have been doing
Research by topic areas...
Symptoms and symptom management
Disease modifying treatments
Meuth SG, Göbel K, Wiendl H.
Immune therapy of multiple sclerosis--future strategies.
Curr Pharm Des. 2012;18(29):4489-97.
Costantino C, Licari O, Granella F, et al.
Neuromuscular taping in multiple sclerosis. A pilot study.
Acta Biomed. 2012 Aug;83(2):103-7.
Gleason PP, Phillips J, Fenrick BA, et al.
Dalfampridine prior authorization program: a cohort study.
J Manag Care Pharm. 2012 Jan;19(1):18-25.
Bombardier CH, Ehde DM, Gibbons LE, et al.
Telephone-based physical activity counseling for major depression in people with multiple sclerosis.
J Consult Clin Psychol. 2013 Feb;81(1):89-99.
Mathieu D, Effendi K, Blanchard J, et al.
Comparative study of gamma knife surgery and percutaneous retrogasserian glycerol rhizotomy for trigeminal neuralgia in patients with multiple sclerosis.
J Neurosurg. 2012 Dec;117 Suppl:175-80.
Marrie RA, Fisk JD, Yu BN, et al.
Mental comorbidity and multiple sclerosis: validating administrative data to support population-based surveillance.
BMC Neurol. 2013 Feb 6;13(1):16. [Epub ahead of print]
Jones KH, Ford DV, Jones PA, et al.
The physical and psychological impact of multiple sclerosis using the MSIS-29 via the web portal of the UK MS Register.
PLoS One. 2013;8(1):e55422.
Zivadinov R, Treu CN, Weinstock-Guttman B, et al.
Interdependence and contributions of sun exposure and vitamin D to MRI measures in multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2013 Feb 5. [Epub ahead of print]
David Brandes, Karina Raimundo, Neetu Agashivala, et al.
Implications of real-world adherence on cost-effectiveness analysis in multiple sclerosis.
J Med Econ. 2013 Feb 7. [Epub ahead of print]
Pan F, Goh JW, Cutter G, Su W, et al.
Long-term cost-effectiveness model of interferon beta-1b in the early treatment of multiple sclerosis in the United States.
Clin Ther. 2012 Sep;34(9):1966-76.
Galea I, Lederer C, Neuhaus A, et al.
A Web-based tool for personalized prediction of long-term disease course in patients with multiple sclerosis.
Eur J Neurol.2012 Dec 7. doi: 10.1111/ene.12016. [Epub ahead of print]
Filippi M, Preziosa P, Rocca MA.
Vitamin A: yet another player in multiple sclerosis pathogenesis?
Expert Rev Clin Immunol. 2013 Feb;9(2):113-5.
Rocca MA, Bonnet MC, Meani A, et al.
Differential cerebellar functional interactions during an interference task across multiple sclerosis phenotypes.
Radiology. 2012 Dec;265(3):864-73.
Provision of care
Peters M, Fitzpatrick R, Doll H, et al.
Patients' experiences of health and social care in long-term neurological conditions in England: a cross-sectional survey.
J Health Serv Res Policy. 2013;18(1):28-33.
Pregnancy and childbirth
Lu E, Zhu F, van der Kop M, Dahlgren L, et al.
Labor induction and augmentation in women with multiple sclerosis.
Mult Scler. 2013 Feb 5. [Epub ahead of print]
Cameron MH, Asano M, Bourdette D, et al.
People with multiple sclerosis use many fall prevention strategies but still fall frequently.
Arch Phys Med Rehabil. 2013 Feb 4. doi:pii: S0003-9993(13)00106-8. 10.1016/j.apmr.2013.01.021. [Epub ahead of print]