QL16
A Qualitative Exploration of Fatigue in Patients with Progressive Multiple Sclerosis
The patient-focused qualitative literature on fatigue in progressive forms of multiple sclerosis (MS) is sparse.
Objectives:
To better understand the experience of progressive MS-related fatigue from the patient perspective.
Methods:
Adult patients (N=44) with primary progressive MS (PPMS; n=21) and secondary progressive MS (SPMS; n=23), recruited via a medical recruitment agency in the US, participated in a 45-minute semi-structured telephone interview. Patients were asked to describe their MS symptoms and to comment on how MS affected their day-to-day lives, including which symptoms were most bothersome. More detailed questions followed on the nature of their fatigue, including symptoms, impacts, frequency and bothersomeness.
Results:
The mean age of patients was 52.5 years, mean time since diagnosis was 14.7 years and the majority were female (81.8%). Nearly 80% of patients were unemployed and/or receiving disability benefits. Of all spontaneously reported MS symptoms, fatigue was the most common (n=38, 86.4%), followed by ambulation problems (n=31, 70.5%) and muscle weakness (n=25, 56.8%). Patients used the words “tired”, “exhausted”, “wiped out” and having “little or no energy” to describe their fatigue. More patients rated fatigue as their “most troubling symptom” (n=17, 38.6%) compared with other MS-related symptoms. Half of patients reported feeling constantly fatigued and more than 90% reported experiencing fatigue at least daily. The top three most frequently reported negative impacts of fatigue were social functioning, cognitive functioning and emotional wellbeing (all >80%). Patients described themselves as “homebodies”, as fatigue limited their social interactions with friends and family, and impacted the types of activities they could participate in. Patients attributed their inability to think clearly or focus for long periods of time to their fatigue. Patients also reported experiencing depression and anxiety because of their fatigue, which would often have further negative effects on their relationships with friends and family.
Conclusions:
Fatigue is a common, troublesome and disabling symptom which has a profound impact on patients’ daily lives. These findings provide insights into the varied consequences of fatigue and can inform its measurement in both clinical and research settings. Treatments which improve the symptoms of fatigue or prevent exacerbations are needed for patients with progressive MS.