FIGURE 3.

Patient and carer general health state assessed using age‐appropriate EQ‐5D‐3L questionnaires. Panel A: EQ‐5D‐3L utility score (1 equates to perfect health, 0 equates to death and negative values represent states worse than death [14]) calculated using the UK value set [22]; there is currently no value set for the self‐completed EQ‐5D‐Y (8–15 years), therefore utility scores could not be calculated for this age group; the UK reference value was calculated from published age‐specific UK population norms weighted for the age‐distribution of the adult patients assuming the population norm for age 16–17 years was equivalent to age 18–24 years [43]; X indicates the mean. Panels B–E: Proportion of patients reporting problems according to EQ‐5D‐3L dimension level (B: adult patients ≥16 years; C: children 8–15 years; D: children 4–7 years [proxy]; E: carers). EQ‐5D‐3L domains were classified as level 1: no problems; level 2: moderate problems; level 3: extreme problems. (note: boxes represent the 25th percentile, 50th percentile [median] and 75th percentile of ranked scores; for the Carer utility score, the 50th and 75th percentile were 1.0 and consequently both are indicated by the top line of the box)