OBJECTIVES : The objective of this analysis was to examine patient-reported healthcare resource use for Charcot-Marie-Tooth disease (CMT) in real-world practice.

METHODS : Adults with CMT were recruited to a two-year international observational study exploring the real-world impact of the disease. Data were collected via CMT&Me, a ‘bring your own device’ app developed for the study, through which participants were asked questions about demographics, CMT management, and quality of life. This interim analysis compared annual healthcare professional visit frequency reported by participants from Germany, Italy, Spain, the UK, and the US.

RESULTS : The mean total number of healthcare professional visits per year was 36.4 (standard deviation [SD] 78.7). When analyzed by country, the mean number of visits varied substantially: Germany 156.8 (SD 149.3), Italy 39.5 (SD 56.2), Spain 65.0 (SD 150.2), UK 12.2 (SD 12.9), US 24.9 (SD 39.6). The distribution of total annual visits across different healthcare professionals also varied: visits to physiotherapists and physical therapists accounted for 77% of visits in Germany, 67% in Italy, 74% in Spain, 36% in the UK, and 50% in the US. Neurologists were visited annually by 76% of respondents, with the mean number of visits ranging from 1.0 in the UK to 2.7 in Germany. Family doctors were visited by 74% of respondents. However, the frequency of visits varied from 3% of all visits in Germany to 21% in the UK. The mean number of different professionals visited annually was 3.8 (SD 2.1). By country, the mean number of different professionals visited was as follows: Germany 5.0 (SD 2.3), Italy 4.2 (SD 2.0), Spain 4.0 (SD 2.0), UK 3.7 (SD 2.1), US 3.5 (SD 2.0).

CONCLUSIONS : CMT management requires intensive healthcare resource use. Participants in this real-world study visited several different professionals annually. The total annual number and distribution of visits across professionals varied considerably between countries.