Perceived Cognitive Fatigability in Multiple Sclerosis: Input from People with Lived Experience on Unmet Needs.

PURPOSE: Cognitive fatigability (CF), which refers to a decline in performance during sustained cognitive effort, can significantly impact people with multiple sclerosis (PwMS). This study examined the unmet needs related to perceived CF in PwMS.

METHODS

One hundred PwMS completed a survey assessing factors known to contribute to CF. Participants indicated whether each factor, including CF itself, was disruptive and whether adequate support was available to address these concerns. A factor identified as disruptive and insufficiently addressed was considered an unmet need (Need Index [NI] ≥50%).

RESULTS

Group-level analysis revealed no significant unmet needs, although fatigue (NI = 30.23), CF (NI = 22.96) and physical activity (NI = 19.55) were more frequently reported. Individual-level analyses revealed that unmet needs varied by community setting (rural vs urban) and socioeconomic status (SES) (lower vs higher SES), with rural participants and those with lower SES reporting higher rates of unmet needs. In addition, PwMS who indicated CF was an unmet need reported more difficulties across most contributory factors, including sleep quality, fatigue, cognitive impairment, depression and contextual factors. The presence of fatigue and CF combined contributed to greater unmet needs across various domains, especially fatigue, CF and cognitive impairment, compared to fatigue alone.

CONCLUSIONS

Participants from rural and low socioeconomic backgrounds were more likely to have unmet needs. Notably, 36% of participants (N = 33) reported unmet needs related to perceived CF. The findings highlight the importance of tailoring future interventions to address identified needs more adequately.