Neuromuscular diseases NMD
Conditions
Interventions
None listed
Sponsors
Academisch Medisch Centrum
Eligibility
Age
18 Years to 99 Years
Inclusion criteria
Inclusion criteria: (1) Diagnosed with a Neuromuscular Disease. (2) Muscle weakness in the upper or lower extremities; e.g. a score of
Exclusion criteria
Exclusion criteria: (1) Insufficient mastery of the Dutch language. (2) Cognitive impairment. (3) Contra-indications for maximal exercise testing according to the guidelines by the American College of Sports Medicine (ACSM).
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| (1) The amount of time spent at low (60%HRR) intensities during ADL. ADL (active minutes) will be assessed by an ankle worn activity monitor during 7 consecutive days. During the same period, the heart rate will be assessed with a heart rate monitor (HRADL, bpm). To determine the relative intensity of ADL, heart rate responses will be expressed relative to the individuals* heart rate reserve (HRR), defined as the difference between resting and peak heart rate (HRpeak, bpm). HRpeak will be measured in a maximal exercise test. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary study endpoints will include, the level of physical activity in daily life, the relative intensity of standardized walking, muscle strength, and self-reported ADL. (2) Level of physical activity ADL (active minutes) will be measured for 7 days in the individuals* own living environment with an ankle worn activity monitor and with an activity wirstband. (3) Relative intensity of standardized walking. The relative intensity of standardized walking is obtained by expressing the heart rate response (HRwalk) and oxygen uptake (VO2walk ) during a 6 minute walk test (6MWT) at comfortable speed relative to respectively the individual heart rate reserve (HRR) and oxygen uptake reserve (VO2R) as determined during a maximal exercise test. (4) Muscle strength Muscle strength will be determined by manual muscle testing (MMT) according to the Medical Research Council [MRC] scale. Muscle groups to be tested are hip flexors and extensors, hip abductors and adductors, knee flexors and extensors, and ankle dorsi- and plantarflexors. (5) Self-reported ADL For adequate interpretation of the data regarding ADL, subjects will be asked to note their activity program during the day in a diary. Subjects will be asked to note the time of getting up, type and duration of activities during the day, and the time of going to bed. Besides, subjects are asked to indicate for all different activities whether they were experienced as low, moderate, or vigorous in intensity. | — |
Countries
Netherlands
Outcome results
None listed