MSA Trust

MSA Needs Surveys 2019

Previous research has demonstrated that MSA has a severe impact on quality of life. Our MSA Needs Surveys explore the needs of people living with, and affected by, MSA. This helps us improve the services and support we and other organisations, offer and better campaign on behalf of people living with the condition.

In 2019 the research looked at both people living with MSA and people who previously cared for somebody with MSA, making it the largest ever study of people affected by the condition. The survey covered the UK and Ireland and all results were collected by August 2019 through paper and online questionnaires.

Below you will find a Summary Document containing of some of the key messages that we found, showing the huge impact that living with MSA has on those affected and their carers. You can also download the Technical Reports for both surveys, which gives an in-depth analysis of the data and some conclusions and recommendations.

We will be conducting our second MSA Needs Surveys in 2022. This year there will be three surveys – one for people living with MSA, one for current carers and one for people who have previously cared for someone with MSA. We hope these will launch in Summer 2022. If you are a member of the Trust will receive notification by email or post, depending on your contact preferences. If you have any questions about the MSA Needs Surveys please contact us.

Both our 2019 and 2022 surveys are being conducted by IQVIA. You can find out more about the company here.