#CMSC16 – Study of PPMS Patient Characteristics Highlights Need for More Information

PeopleĀ with primary progressive multiple sclerosis (PPMS)Ā are usually older and more disabled than thoseĀ withĀ relapsing-remitting MS, researchers atĀ Washington UniversityĀ reported. The team is studying demographic and clinical characteristics of PPMS patients enrolled in theĀ NARCOMSĀ registry, to better understand their unmet needs and possibly improve research into potential treatments.
The study, āThe Profile of a Contemporary Cohort of Participants with Primary Progressive Multiple Sclerosis in the NARCOMS Registry” was presented at theĀ Consortium of Multiple Sclerosis Centers (CMSC) 2016 Annual Meeting, taking placeĀ in National Harbor, Maryland, through June 4.
PPMS differs in several aspects from the far more common relapsing-remitting (RR) formĀ of MS, both in terms of probable underlying disease mechanismsĀ and regardingĀ prognosis and treatment. As a result of the skewed proportion of the disease types, most research also focuses on RRMS, and much more is known about RRMS patients than those with PPMS.
NARCOMS is a global registry for MS research, treatment, and patient education, in part supported byĀ CMSC and its Foundation. The registryĀ uses semiannual surveys to gather comprehensive data about demographic and clinical characteristics of itsĀ patients.
The presentation on June 3, opening a Platform Session called āComprehensive Care in MS and Symptom Managementā and sponsored by Genentech, was based on analyses of self-reportedĀ data from patients who participated in the spring 2015 survey.
Among the 8,004 participants, 632 (7.9 percent) reported that they were suffering from PPMS. This group was largely women (62.7 percent), and most reported becoming ill at an average age of 36. These people were now, on average, 64.3 years old.
A vast majority (94 percent) were Caucasians, and many (89 percent) in the PPMS group were also unemployed. Only 9 percent reported to smoke tobacco.
The median Patient-Determined Disease Steps (PDDS) score, a measure of patient-reported disability, was 6, equaling a need for bilateralĀ support. Half of the group fell within the range of 5 (late cane support) to 7 (wheelchair or scooter use). Most patients, 80.5 percent, reported fatigue, and many also had impaired hand function.
During the six months preceding the survey, 13.1 percent had a relapse, while 66.9 percent reported a worsening in diseaseĀ symptoms. Also, 19.7 percent soughtĀ emergency care, and 13.8 percent wereĀ hospitalized during this period. A quarter of the hospitalizations were caused by a urinary tract infection.
The most commonly reported other disease conditions were high blood pressure, high cholesterol, depression, and osteoporosis (brittle bones), affecting a large proportion of the patients. Most MS patients who reported comorbid diseases were receiving treatment for them.
“As expected, registry participants with PPMS were older and more disabled than typically reported by persons with relapsing-remitting MS,” the researchers concluded. The team suggested that further studiesĀ should be conducted on the various aspects of PPMS patient characteristics, in order to better understand this form of MS, and assist inĀ the development ofĀ effective therapies for thisĀ patient population.