1. Welcome

6% of survey complete.
This survey asks for your experience of using the Internet to gain information on Multiple Sclerosis (MS), and medicines used to manage its symptoms.  We will collect information from you (or your carer) on your preference for obtaining information on your medications.  The survey will take about 20 to 30 minutes to complete.

Multiple Sclerosis
Multiple Sclerosis (MS) is a neurological condition which affects approximately 100,000 people in the UK (Ford et al., 2012; Jones et al., 2013).1,2 There are lots of options for treating and managing MS. They include drug treatments, exercise and physiotherapy, diet and alternative therapies. Patient education is an important factor to ensure patients make informed decisions about the management of their condition.  Much of this information is readily available on the Internet; indeed there has been a marked increase in the amount of health related information available online.  However, there is no measure of the quality of this information.

Recent studies showed that people living with MS consistently use the Internet to inform decisions, 63% of which performed MS-related searches online to gain information on their condition, including treatment options (Lejbkowicz et al., 2010; Marrie et al., 2013)3,4. However, there was no indication of the quality of medical information, which presumably varies from website to website.  The current study therefore aims to explore how people with MS search for medical information online, how they determine the quality of the information, and ask whether or not an online resource to help inform treatment choices (e.g. side effects of prescribed medications). 

Project title
Using online information about medications to inform a person living with Multiple Sclerosis (MS).

Study aim
The aim of this study is to examine how people living with MS, in the UK, access and use online information about their medication(s) to inform choice.  

1. To determine how people with MS use the Internet to find information about MS.
2. To identify how people with MS find online information regarding the medications they have been prescribed to manage their conditions.
3. To explore how people with MS determine if the information they use is of good quality to inform their choices. 
4. To evaluate if people with MS would like to use an online tool to help them to decide if the information they have found on the Internet about medications is of good quality.

Ethics committee reference: 120716-536264@swansea.ac.uk

Lead investigator: Mr Adel Alhlayl. Email: 536264@swansea.ac.uk  Phone: 01792 606676

1. Ford, D. V., Jones, K. H., Middleton, R. M., Lockhart-Jones, H., Maramba, I. D., Noble, G. J., .Lyons, R. A. (2012). The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC medical informatics and decision making, 12(1), 73.

2.Jones, K. H., Ford, D. V., Jones, P. A., John, A., Middleton, R. M., Lockhart-Jones, H., Noble, J. G. (2013). How people with multiple sclerosis rate their quality of life: an EQ-5D survey via the UK MS register.

3. Lejbkowicz, I., Paperna, T., Stein, N., Dishon, S., & Miller, A. (2010). Internet usage by patients with multiple sclerosis: implications to participatory medicine and personalized healthcare. Multiple sclerosis international. 

4. Marrie, R. A., Salter, A. R., Tyry, T., Fox, R. J., & Cutter, G. R. (2013). Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought. Journal of medical Internet research, 15(4).