Nearly 75% of MS Patients in UK Study Went Through Progressive Decline Prior to Death

A new study  focused on an aspect of multiple sclerosis (MS) that is sometimes overlooked by researchers: progressive dwindling, or the tendency over time for people with MS to become increasingly frail and dependent on caregivers, with diminished energy and heightened disability. The report, “Progressive Dwindling in Multiple Sclerosis: An Opportunity to Improve Care,“  was published July 21 in the journal PloS One.

To study progressive dwindling, the researchers obtained death certificates and clinical information on 582 MS patients in the U.K., who died between January 1998 and February 2015. Led by Jessica E. Martin of the Centre for Neuroinflammation and Neurodegeneration, Division of Brain Sciences, Imperial College London, the team tried to identify how many of these people went through progressive dwindling, as well as the factors that might predict this development.

Overall, the scientists found that 73.7 percent of the study’s patients experienced progressive dwindling before dying, going through an extended, years-long decline. A total of 72.5 percent died due to complications related to their MS. These patients commonly had more aggressive forms of MS from the disease’s onset, which occurred at an earlier age and resulted in earlier “symptom onset, progression, wheelchair use, and death,” the researchers said.

Progressive dwindling was also associated with dying in the hospital rather than in other settings, such as at home.

The study also revealed that progressive dwindling is more common in people with MS than among elderly in the general population. Among older adults, 40 percent progressively dwindle before dying, compared to the 73.7 percent of MS patients in this study. In addition, only 35 percent of the general population in the U.K. die in a hospital, while among the 503 MS patients whose place of death was identified, 50.7 percent died in hospital and 25.4 percent in a care home.

Researchers noted that these results could impact care of those with MS. “We believe that better coordination of medical and social care is paramount in the years prior to death but subsequent to active treatment in [people with MS] and other populations. The results from this study provide a framework on which to base subsequent care strategies, and to target those who might benefit most from formative care,” they wrote.

Predicting those MS patients most likely to progressively dwindle could allow for different and more humane care strategies, as well as the coordination of additional medical and social services.