Abstract
Background: Symptom control in chronic illness is not merely a matter of medical management as the patient and family must rely on their own judgment, wisdom, and ingenuity for controlling symptoms. The absence in the literature regarding the effects of multiple sclerosis (MS) as perceived by afflicted people and their family members led to the 10-year longitudinal study.
Objectives: To study patient self-report data to determine whether particular interventions may be needed to enhance the individual's comfort and functional levels.
Methods: The chronic illness trajectory of three groups of people with MS (<=5 years of diagnosis, n=49;>5 to 10 years,n=36; and >10 years, n=68) was examined over a 10-year period. Serial self-assessments of the subjects' prevalence of MS-related symptoms (motor, brain stem, sensory, elimination, mental/emotional) and level of activities of daily living (ADL) functioning(fine and gross motor activities, sensory/communication, socializing/recreation, intimacy) were obtained annually. Profiles illustrating the subject's symptom and ADL pattern were also returned annually to each subject.
Results: Using 10-year average scores, study findings indicated no group differences relative to symptoms but showed significant group differences in all ADL functions. Separate group within-year (1, 3, 5, 7, 10) comparisons reflected significant increases in motor, brain stem, and elimination symptoms together with a decline in all ADL functions for specific groups.
Conclusions: Medical data suggest, on average, a continuous downward trajectory beginning in the first years of illness or at approximately 36 to 37 years of age. In contrast, in this research, patient self-reports of fine and gross motor ADL, a correlate of neurologically based disability evaluations, reflect that relatively major decline begins after 5 years post-diagnosis and after age 40 for subjects recruited primarily from nonclinical sites.