Composite of PROM and observed items. Designed to reflect natural history of DMD in the non-ambulatory phase and designed by individuals with DMD. It focuses on meaningful changes that benefit from intervention to preserve function and independence. The original version contained 10 items, each scored on four levels (0 – 3) with a higher score reflecting lower ability. The EK2 consists of the same 10 items with the addition of seven new items focusing on issues such as eating, chewing, the use of hands, fatigue and holding their head up.

Composite scale including Activity and Participation

DMA and SMA – Any NMD where ambulatory ability has been lost.

Non-ambulatory

The EK or EK2 is performed as a dialogue between the evaluator and the patient and their relatives and is a mixture of observation and patient reported items. It takes approximately 5 to 15 minutes to complete.

A particularly useful PROM with which to guide management in the clinic setting in non-ambulant individuals.