Quality of life among persons with multiple sclerosis and their caregivers

For those with a chronic illness, suffering may result not only from physical limitations, but also from the psychosocial consequences of having a chronic condition. Few studies have described the psychosocial characteristics of the physically disabled. Even more rare are population-based studies of quality of life (QOL) among persons with multiple sclerosis (MS) and their caregivers. We conducted a large survey of persons with MS and their caregivers in Ontario using self-completed mailed questionnaires. The objectives included describing satisfaction with QOL and determining relationships between QOL as a whole and several other factors, such as demographic characteristics and measures of physical disability. Response rates were 83% for those with MS and 72% for their caregivers. Based on 697 respondents with MS, mean age was 48 years, 70% were women, and 75% were married. While 24% experienced no mobility restrictions, the majority required some type of aid or a wheelchair for getting around. Health received the lowest satisfaction rating among the six components of QOL, while finances received a relatively low satisfaction rating from the 345 caregivers. Less satisfaction with several QOL components was evident for those with MS compared with the disabled in the Canadian general population, and for caregivers compared with the able-bodied general population. Poorer QOL as a whole among those with MS was associated with unemployment, MS symptoms of moderate or worse, fatigue, mobility limitations on stairs, a disease course other than stable, and was most strongly related to interference by MS in social activities. Among caregivers, poorer QOL as a whole was associated with being a spouse, longer duration of caregiving, moderate or worse MS symptoms in the care recipient, and most strongly related to a care recipient's current MS disease course of other than stable. Through an understanding of the satisfaction with QOL of persons with MS and caregivers, and the relationships with other important factors, autonomy and home care may be supported and prolonged, while preventing unnecessary institutionalization.