Assessment of Health-Related Quality of Life in Patients with Multiple Sclerosis in the Outpatient Setting: A Mixed Methods Study

Health-related quality of life (HRQoL) is often adversely affected in multiple sclerosis (MS). It has been extensively researched but to date there is little published describing its assessment in routine clinical practice. This study examines whether there is a role for the assessment of HRQoL in patients with MS in daily clinical practice. The research was undertaken at two NHS hospital outpatient departments in the UK. The first phase of this explanatory sequential mixed methods study was designed to gather information on the physical and psychological dimensions of HRQoL using the Multiple Sclerosis Impact Scale version 2 (MSIS-29v2) in a longitudinal prospective panel study of 311 patients. The impact of interventions on HRQoL was measured through subsequent assessments. In the second phase, a grounded theory-based approach was followed. Information concerning the views and experiences of fifteen patient-participants and two healthcare professionals of using a HRQoL measure within a routine outpatient consultation was gathered through semi-structured interviews and explored with thematic analysis. The results support the use of the MSIS-29v2 in the outpatient setting as a means of facilitating the discussion of HRQoL issues for which interventions may be offered, and heightening healthcare professionals’ awareness of patient problems. Shared decision-making was promoted and an awareness of the different levels of involvement patients wanted in their care revealed. Those interviewed valued the use of the MSIS-29v2, describing how they became more aware of the impact that MS was having on them; subsequently many reported that they became more active participants in the management of their MS. A change in HRQoL following interventions was not consistently demonstrated, possibly due to the heterogeneity of MS and short time scale of the research. However, the research demonstrates the value to both patients and healthcare professionals of using a HRQoL measure in daily clinical practice.