The Experience of Living with Advanced MS
Research type
Research Study
Full title
A qualitative study exploring the experience of living with advanced multiple sclerosis
IRAS ID
248346
Contact name
Charlotte Smith
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 8 months, 3 days
Research summary
Multiple sclerosis (MS) is a disease that affects the brain and spinal cord. There is no cure and it causes a range of symptoms including bladder and bowel dysfunction, cognitive difficulties, pain and balance problems. Currently, the service provision for MS involves drug-therapy to slow progression of the disease. However, there remains a distinct group of MS patients for whom drug therapy is either no longer a suitable or sufficient option. This subgroup of people has been described as having ‘advanced MS’, defined by the presence of additional MS-related complexities which result in a markedly high level of disease burden and disability.
This high level of disease burden and disability experienced by people with advanced MS constitute a unique experience. Arguably, the traditional approach to conceptualizing MS in terms of four types of disease progression has contributed to a predominantly biomedical approach. The psychological and social aspects of living with the disease (e.g. how the disease affects mood or valued social roles) remain relatively unexplored. The psychosocial dimensions are likely to be particularly pertinent in the case of advanced MS, when the person faces a high level of disease burden, and where drug therapy is not available. Psychosocial interventions may prove particularly valuable for this patient group.
This study aims to develop an in-depth understanding of the experience of living with advanced MS (formally defined by high disease burden, limited mobility and dependence on others for daily care; MS Trust, 2016). A particular focus will be given to understanding the psychological and social impacts of living with the disease. Up-to twenty-five people with advanced MS will be recruited from NHS clinics to take part in an in-depth face-to-face semi-structured interview. The analysis will aim to capture the main themes discussed by participants.
Reference:
MS Trust. (2016). Improving Services for People with Advanced MS. London: MS Trust
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
19/EE/0100
Date of REC Opinion
6 Jun 2019
REC opinion
Further Information Favourable Opinion