Self-Reported Language Difficulties in Persons with Multiple Sclerosis and Their Impact on Quality of Life

This study aims to understand how often communication difficulties are experienced by persons living with MS, what these communication difficulties may be, and how they impact on quality of life and everyday activities.

Summary

The aim of this study is to better understand the communication experiences of persons living with MS. The researchers are interested in understanding how often communication difficulties are experienced, what these communication difficulties may be, and how they impact on quality of life and everyday activities.

The findings of this study will help the researchers raise awareness and improve their knowledge of communication problems in MS. This will help them design more specific and effective treatments to help persons with MS maintain participation in the community and workforce. They are looking both for people with MS who do and who do not experience communication problems in their daily life. To be eligible for this study, you must have a diagnosis of MS and be 18 years of age or more.

What does this study involve?

This study requires participants to complete an anonymous online questionnaire with questions about communication, memory and thinking, quality of life, and social support and networks. All potential participants will be invited to go to the questionnaire’s website. Upon opening the website, the participant will be asked to read a Participation Information Statement and to provide consent to proceed with the questionnaire. The questionnaire will take approximately 30 to 45 minutes to complete (with the option to complete the questionnaire over multiple sessions).

If the participant leaves their email address, the researchers will contact them after 2 weeks and ask them to complete a shorter 10-minute questionnaire. Participants have the opportunity to win 1 of 4 $25 gift vouchers if they complete the two questionnaires.

The questionnaire can be found here.

Documentation

Below, you will find a Flyer and the Patient Information Statement for more detailed information.

Ethics letter of approval

Recruitment of persons with multiple sclerosis (MS)

Participant Information Statement

Flyer

Contacts

Research involving humans in Australia is reviewed by an independent group of people called the Human Research Ethics Committee (HREC). The ethical aspects of this study have been approved by the HREC of the University of Sydney [Protocol number: 2019/619]. As part of this process, the researchers listed above have agreed to carry out the study according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect people who agree to take part in research studies.

If you are concerned about the way this study is being conducted or you wish to make a complaint to someone independent from the study, please contact the university using the details outlined below. Please quote the study title and protocol number.

The Manager, Ethics Administration, University of Sydney:
• Telephone: +61 2 8627 8176
• Email: human.ethics@sydney.edu.au