Table 2.

Characteristics of the study population

	First questionnaire	Last questionnaire
Number of patientsa	80	80
Demographic characteristics
Age (years; SD, min–max)	51.0 (± 12.2; 25–76)	51.9 (± 12.2; 25–76)
Gender (number, % male)	41 (51%)	41 (51%)
Clinical characteristics
Duration since diagnosis (years; SD, min–max)	9.3 (± 9.4; 0–30)	10.2 (± 9.3; 0–30)
Ambulatory support (%)	48.8%	55.0%
Respiratory support (%)	30.0%	32.1%

^aFor patients who completed only one questionnaire, it was used both as first and last observation