Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM by Klingels, K, Mayhew, AG, Mazzone, ES, Duong, T, Decostre, V, Werlauff, U, Vroom, E, Mercuri, E, Goemans, NM, Upper Limb Clinical Outcome Group