Keeping cool - how persons with MS manage heat sensitivity: Insights from the Swiss multiple sclerosis registry

Temperature sensitivity affects many persons with multiple sclerosis (pwMS). Heat sensitivity describes a temporary symptom worsening in response to heat exposure. Cooling methods may counteract this and improve quality of life, but their real-world awareness and usage are poorly understood.

To assess the frequency of temperature sensitivity among pwMS and examine awareness and usage of cooling methods.

This cross-sectional analysis included 760 participants from the Swiss MS Registry. Data from a survey on temperature sensitivity and cooling methods were analyzed using descriptive statistics and logistic regression to identify factors associated with awareness and usage of cooling methods.

Overall, 73.3% of respondents indicated temperature sensitivity, most commonly to heat (48.8%) or heat and cold (18%). Fatigue (70.2%), weakness/muscle weakness (48.7%), and gait issues (38.6%) were the most frequently reported exacerbated symptoms. While 62% were aware of cooling methods, only 44.3% of those who were aware and reported being sensitive to heat or heat and cold used them. The most frequently used cooling methods were cold showers (48.7%), ventilators (46.1%), and cooling cloths (33.8%). Awareness was positively associated with female sex, symptom burden, and temperature sensitivity, and varied regionally. Swiss citizenship was associated with cooling method usage.

Despite the high frequency of temperature sensitivity, many pwMS do not use cooling methods, even when aware of them. Cooling method usage varies widely, making uniform recommendations challenging. Future studies are needed to survey healthcare professionals to better understand their awareness of heat-related symptom worsening and potential barriers to counselling on cooling methods.