Project Name
Exploring the transition from relapsing-remitting to secondary progressive multiple sclerosis to inform the production of content of support programmes for patients and carers, and educational packages for clinicians.

Value
ÂŁ49,960

Funder
MS Trust

Principal Investigator
Prof Adrian Edwards, Cardiff School of Medicine

Team
Dr Fiona Wood, Prof Neil Robertson, Ms Rachel Wallbank, Dr Andrea Lowton, Mr Ian Folks, Dr Michelle Edwards, Ms Francesca Deibel, Dr Kate Brain.

Type of study
Qualitative research study

Summary
Despite disease-modifying therapies and improvements in relapse management, after ten years up to half of people with MS will deteriorate into what is termed secondary progressive MS. Symptoms typically include fatigue, impaired mobility, depression, bladder and bowel problems and cognitive decline. Whilst new disease-modifying therapies and drugs to ease symptoms are available, these have limited benefit and are often poorly tolerated in patients with progressive MS.
Research has focussed primarily on supporting people with newly diagnosed MS, disease-modifying therapies and relapse management, with less focus on patients with progressive MS, who often manage their condition independently of the healthcare system. The extensive physical and psychosocial burdens placed on people with MS warrant the development and evaluation of support programmes, both to patients and carers, and educational packages for clinicians in order to promote enhanced quality-of-life for people with progressive MS. To do this, we must undertake detailed research into the transition from relapsing-remitting to secondary progressive MS, the experiences of this transition for people affected and their carers, and of health professionals’ perspectives and needs.
This qualitative research study will use interviews and focus groups with patients, carers and clinicians to identify these experiences and needs. Analysis will summarise these experiences and needs, identifying essential content for the support and educational programmes.

School role
WSPCR led

Start date
September 2013

End date
November 2014