What is different for people with MS who have pressure ulcers: A reflective study of the impact upon people's quality of life?

• A PU specific outcome measure of Health Related Quality of Life was developed.
• PUs affect QoL; we investigated patterns of association unique to MS patients.
• Patients with MS and PUs had more mobility problems than the general PU population.
• Patients with MS appear to cope better, possibly due to distinct coping strategies.

BackgroundMultiple Sclerosis (MS) is a progressive, degenerative disease of the central nervous system. People with advanced disease who have compromised mobility, activity, sensory and/or cognitive abilities are at risk of pressure ulcers. Having a pressure ulcer has a substantial impact on a person's quality of life; a generic pressure ulcer Health Related Quality of Life (HRQL) framework has been used in this study.AimTo explore the views and opinions of patients with MS who have a pressure ulcer using a thematic framework and compare these to the general pressure ulcer population.MethodsData for six MS patients was obtained through secondary analysis of transcripts from semi-structured interviews conducted during two studies which were part of a programme of HRQL Research.FindingsPatients with MS reported that their pressure ulcer affected their lives physically, psychologically and socially. All were confined to bed (as part of their pressure ulcer treatment) and therefore unable to participate in activities. Difficulties with movement and activity were partially attributed to the MS. Patients with MS did not report feeling ill with their pressure ulcer and expressed positive emotions and optimism. Pain or discomfort was a feature of the pressure ulcer for most patients.ConclusionsPressure ulcers have a major impact on QOL for all patients. Problems with mobility and activity associated with the pressure ulcer were confounded by the MS.