RESEARCH STUDY - COGNITIVE RESERVE IN MULTIPLE SCLEROSIS
Call for participants with and without MS, who are aged 18-60 years.

The purpose of this study is to better understand cognitive outcomes in MS. Up to 60% of people with MS experience cognitive difficulties, which can include difficulties with thinking quickly or remembering information. MS can lead to changes in the brain. However, brain changes alone cannot fully explain why some people with MS experience more cognitive difficulty than others. Some people with MS seem to be better able to compensate for brain changes. This may be in part due to cognitive reserve.
Cognitive reserve describes an individual’s ability to adapt to brain changes. A person with a greater cognitive reserve may be able to withstand the consequences of brain changes for longer. Cognitive reserve cannot be measured directly. Instead, researchers use proxy measures, including a person’s educational and occupational achievements, and their engagement in a wide range of leisure activities (e.g., socialising, volunteering, exercising, reading).
In this study, we aim to investigate the impact of cognitive reserve on cognitive outcomes in MS. We are particularly interested in understanding how common MS symptoms interact with cognitive reserve. Many people with MS experience ‘invisible symptoms’, such as fatigue, depression, and anxiety. Experiencing any of these symptoms may impact an individual’s ability to engage in enriching activities. Unfortunately, invisible symptoms are still often overlooked, both in clinical practice and in research. By participating in this research, you can help to address this.

Link to the survey: https://ucdpsychology.qualtrics.com/jfe/form/SV_0kqvFXIzASub5RA

Further participant information:

What is this research about?

The purpose of this study is to better understand cognitive outcomes in multiple sclerosis (MS). Up to 60% of people with MS experience cognitive difficulties, which can include difficulties with thinking quickly or remembering information.

MS can lead to changes in the brain. However, brain changes alone cannot fully explain why some people with MS (pwMS) experience more cognitive difficulty than others. Some people with MS seem to be better able to compensate for brain changes. This may be in part due to cognitive reserve.

Cognitive reserve describes an individual’s ability to adapt to brain changes. It is thought that someone with a greater cognitive reserve may be able to withstand the consequences of brain changes for longer than a person with lower cognitive reserve. For example, a person with greater cognitive reserve may have no problems remembering a shopping list, whilst another person with very similar brain changes and lower cognitive reserve might have more difficulties with memory. Cognitive reserve cannot be measured directly. Instead, researchers use proxy measures to assess cognitive reserve. Proxy measures include a person’s educational and occupational achievements, and their engagement in a wide range of leisure activities (e.g., socialising, volunteering, exercising, reading).

In this study, we aim to investigate the impact of cognitive reserve on cognitive outcomes in MS. We are particularly interested in understanding how common MS symptoms interact with cognitive reserve. Many pwMS experience ‘invisible symptoms’, including fatigue, depression, and anxiety. Experiencing any of these symptoms may impact an individual’s ability to engage in enriching activities. Unfortunately, invisible symptoms are still often overlooked, both in clinical practice and in research. We try to address at this gap in our research.

Why are we doing this research?

We are conducting this research to gain a better understanding of cognitive outcomes in MS. We are particularly interested in understanding why some people experience less cognitive difficulty than others, and how this may be related to engagement in everyday activities and invisible MS symptoms. This research will be important to inform the development of interventions and services aimed at improving the quality of care and life for people with MS.

Why have you been invited to take part?

You have been invited to take part in this research as you either have been diagnosed with MS, or you don’t have MS and can be part of the comparison group. Please note that you must be aged 18-60 years to be able to participate. We are excluding people aged over 60 years because we would like to avoid age-related changes influencing our findings. Participants must be English language speakers.

How will your data be used?

We will use the data provided by you to conduct statistical analyses. Results of this research will be submitted as part of the lead researcher’s PhD thesis. They will also be published in research journals and presented at academic conferences. In addition, we will report findings to MS Ireland to be shared with the wider MS community. We will only report aggregated results in our publications. At no point will you be identifiable from the results shared. A completely anonymised version of your data (e.g., using age ranges [20-25 years] instead of exact age [23 years]) will be made available for future research on a data repository. At no point will you be identifiable via this repository. We will upload completely anonymised data to a research repository as this will allow important future research to take place, without placing any additional and unnecessary burden of people like yourself, who have already given their valuable time to similar research.

What will happen if you decide to take part in this research study?

If you decide to take part in this study, you will be asked to complete an online survey made up of questionnaires and a brief online task. We will be asking about your demographic, medical, educational, and occupational background. We will also be asking about your engagement in a range of leisure activities, and your experience of common invisible MS symptoms, including fatigue, depression, and anxiety. At the end of the survey, you will complete a brief (under 5 minutes) online reaction time task. This survey is expected to take a total of approximately 25-30 minutes.

How will your privacy be protected?

We will not ask for your name or any contact details. Some of the questions you will be asked are personal. For example, we will ask about your age, gender, and experience of living with MS. All personal data, which could be used to identify you, will be deleted after this research has been completed. We will not store personal data for longer than necessary. A completely anonymised version of the data collected as part of this research will be made available via a research repository. At no point will you be identifiable.

What are the benefits of taking part in this research study?

You will not benefit directly from taking part in this study but the information we will obtain may provide further knowledge of cognitive functioning and its predictors in MS. In particular, the results of this research will provide insights on the role of cognitive reserve in MS. Our research has a holistic approach, which considers common invisible MS symptoms. This is important to inform the practice of clinicians and researchers developing interventions aimed at improving the quality of life and care experienced by people with MS. This research may inform interventions designed to cognitive functioning and protect against cognitive difficulty.

What are the risks of taking part in this research study?

We understand that reflecting on the experience of living with MS, which for some people will include the experience of fatigue, depression, or anxiety, may be triggering. We don’t expect participants to be negatively affected by taking part in this study, but you know yourself best. If you feel that taking part in this study may result in more harm than good, please refrain from participating. You may also exit the survey and thus withdraw from the study at any stage before you have completed the survey and submitted your final responses. Once the study has been completed, you may not withdraw as your responses will be anonymous. After submitting your final responses, we will provide you with a list of supports you may avail of.

Can you change your mind at any stage and withdraw from the study?

Participation in this research is entirely voluntary and we appreciate your valuable time. Should you decide to withdraw from the study for whatever reason, you may do so by exiting the survey before submitting your final responses. You will not be required to give any explanation for this. Once the survey has been completed, you can no longer withdraw as your data will be anonymous.