Figure 3

Planning of outcome measurements in the RCT. The diary cards are not included in the Figure, but they are used by the patient every day of every month until T₆. In the cohort, the baseline measurement is followed by the same measurements as on T₃ in the RCT and are repeated every three months for at least twelve consecutive months. Definition of abbreviations: T₀ = baseline measurement; T₁ – T₁₀ = consecutive measurements in time after the baseline measurement; A = Anthropometric measures; B = Bicycle test results (maximal cardiopulmonary exercise test (CPET)); S = Spirometry results; 6 = 6MWT + Borg score and mGUG + Borg; M = peripheral muscle strength; P = physical activity in daily life with accelerometer; Q = CCQ*, CRQ-SR, EQ-5D*, DS14, MRC and level of effective mucus clearance, level of motivation, physical activity, physical therapy compliance*; C = questionnaire to assess direct and indirect costs; and G = Global Perceived Effect*. Measurement occasions are explained in the Table above the Figure. *The only measurements on T₁ and T₂.