It is recommended that you see your NMS every 6 months and the physiotherapist and/or occupational therapist for evaluation about every 4 months. This is important in order to make decisions about new treatments or modification of existing treatments at the most appropriate time, as well as to anticipate and prevent problems to the maximum extent possible.
Tests used to evaluate disease progression may vary from clinic to clinic. It is extremely important that you have regular evaluations using these same tests every time, so any changes can be detected. Regular evaluations should include tests that monitor the progression of the disease and assess if interventions are appropriate. In the UK, these will include the North Star Assessments (https://www.musculardystrophyuk.org/information-for-professionals/health-professionals/community-physiotherapy-working-group/muscular-dystrophy-uks-north-star-network/). Those evaluations should include:
Skeletal muscle strength may be measured in a number of different ways to see if the force generated by specific muscles is changing.
RANGE OF JOINT MOTION:
This is done to monitor if contractures or joint tightening are developing and to help to guide what stretches and/or interventions will be most helpful for you.
Many clinics routinely time activities such as getting up off the floor, walking a certain distance, and climbing several steps. This gives important information on how your muscles are changing and responding to different interventions.
MOTOR FUNCTION SCALES:
There are a large number of different scales, but your clinic should routinely use the same one each time they evaluate you. Different scales may be needed at different times.
ACTIVITIES OF DAILY LIVING:
This allows the team to determine whether some additional help might be needed to assist your independence.
DRUG TREATMENTS FOR SKELETAL MUSCLE
A lot of research is happening at the moment in the area of novel therapies for Duchenne. The updated care considerations include recommendations only for therapies for which there is sufficient evidence regarding treatment. These recommendations will change in the future when new evidence for new therapies becomes available. These guidelines will be reviewed and updated as new results become available.
Although it is expected that in the future a wider range of treatment options will be available, at the present time this is limited. Currently, steroids are the only drug recommended for the treatment of musculoskeletal symptoms of Duchenne due to experts in the field agreeing there is sufficient evidence to recommend it. Steroids are discussed in detail in the section on Steroid Management. Drug treatments for other specific symptoms of the disease, such as heart problems, are discussed later.