Exercise as Treatment for Patients With Inclusion Body Myositis

Proportion of included participants completing the exercise intervention

Proportion of received exercise diaries (0-16 per participant)

Proportion of eligible patients enrolled

The participants will log experiences with the intervention (e.g. completed/not completed exercises, reasons for any non-completion, other training activities, barriers/facilitators).

Proportion of patients completing physical fitness tests

Participants will participate in focus group interviews exploring the experiences of the intervention

Assessed by the 2 minutes walking test. Changes in walking distance measured as meters.

The patients are to stand up and sit down from a chair as many times as they can within 30 seconds, and the total number of times is recorded.

Assessed by the Functional Index- 2 in three muscle groups; shoulder flexors (maximum 60 repetitions), neck flexors (maximum 30 repetitions) and hip flexors (maximum 60 repetitions).

Assessed by the Manual Muscle test - 8 (MMT - 8), which includes unilateral testing of muscle strength in 8 eight muscle groups; (Deltoid, Biceps, Wrist extensors, Quadriceps, Ankle dorsiflexors, Neck flexors, Gluteus medius and Gluteus maximux). Each muscle group is scored on a 0-10-point scale (10=best score). The total MMT - 8 will be calculated (0-80, 80=best score).

Assessed by hydraulic hand dynamometer (Baseline). Change in grip strength is recorded in kilograms.

The Berg Balance Scale (BBS) is a 14-item objective measure that assesses static and dynamic balance and fall risk in adults. Each item is scored on a 5-point ordinal scale ranging from 0 to 4, with 0 indicating an inability to complete the task entirely and 4 indicating an ability to complete the task criterion.The total score ranges from 0-52 (52 indicates best score).

The IBMFRS consists of 10 questions about a patient's ability to perform daily activities (including walking, dressing, swallowing and handling utensils). Each question is answered using a number from 0-4. The numbers are added up to give the total score ranging from 0 to 40, with 40 being the best possible score

Change in the last week disability on the total HAQ score (0-3, 0 indicates best possible function). The HAQ comprises 30 questions, covering eight functional ability domains related to daily living during the past week (dressing and grooming, arising, eating, walking, hygiene, reach, grip, and activities). The score ranges from 0-3 (0 indicates no disability, 3 indicates severe disability) in each domain, of which the total CHAQ is calculated.

The patients will identify 3-5 important activities they are unable to perform or have difficulty with due to inclusion body myositis. The patients are then asked to rate the current level of difficulty associated with each activity on an 11-point scale, from 0 (not able to perform the activity) to 10 (no problems).

Assessed by the International Physical Activity Questionnaire-Short form (IPAQ-SF). Change in time (minutes per week/day) and Metabolic Equivalent of Task (MET-minutes per week/day) spent on sitting, walking, and moderate- and vigorous intensity physical activity the last week. METs are calculated by using the corresponding MET-values for walking (3.3 MET), and moderate-(4.0 MET) and vigorous (8.0 MET) intensity physical activity.

Assessed by the Short Form Health Survey (SF36) which comprises 36 questions covering the areas of physical function, role limitations (physical), pain, general health perception, energy and fatigue (vitality), social function, role limitations (emotional), and mental health. The results are recoded so that the final score for each area ranges from 0 to 100, where 100 indicates the best possible health.

Patients will log 1) total of falls during the training period and 2) total number of near-falls during the training period.

Self-reported pain will be assessed by numeric rating scale ranging from 0 (no pain) to 10 (worst pain)

Self-reported muscle fatigue will be assessed by numeric rating scale ranging from 0 (no muscle fatigue) to 10 (worst muscle fatigue)

Self-reported muscle soreness will be assessed by numeric rating scale ranging from 0 (no muscle soreness) to 10 (worst muscle soreness)

Self-reported fatigue will be assessed by numeric rating scale ranging from 0 (no fatigue) to 10 (worst fatigue)