Charcot-Marie-Tooth, Hereditary Motor and Sensory Neuropathy, Polyneuropathies
Conditions
Keywords
CMT, IPAQ, NMD, Charcot-Marie-Tooth, International Physical Activity Questionnaire, neuromuscular disorders, activity diary, hereditary neuropathy
Brief summary
The project will develop knowledge about physical activity in persons with Charcot-Marie-Tooth (CMT) in Norway. We plan to explore instruments to measure physical activity level for the target-group at the community level. We want to understand which type of activities, activity intensities and how persons with CMT perform habitual physical activity. Subsequently, a physical activity measurement instrument adapted to persons with CMT will be developed. This instrument can be used in a future intervention project to promote physical activity in this group.
Detailed description
Charcot-Marie-Tooth (CMT) is a condition that potentially affects daily life function including physical activity. Currently, there is no specific treatment. To prevent physical deconditioning, physical activity recommended. Furthermore, other studies have found the benefit of being physically active, including people with neuromuscular disorders (NMD). . Apart from the physical activity in a rehabilitation center, physical activity also needs to be maintained at the community level in people's everyday life. To measure physical activity level in the community, we need an instrument that is designed for doing so. A questionnaire can be used to collect information about type of activity, activity duration and intensity. The instruments available so far to measure physical activity at the community level are not specifically adapted to persons with CMT. Therefore, this study will focus on revising the questionnaire based on the inputs from persons with CMT themselves. Furthermore, the revised questionnaire will be compared with the original one in addition to yet another instrument.
Interventions
OTHEROriginal IPAQ followed by a revised one.
Comparing two questionnaires (a revised version and an original International Physical Activity Questionnaire short form) with an activity diary.
OTHERRevised IPAQ followed by an original one.
Comparing two questionnaires (a revised version and an original International Physical Activity Questionnaire short form) with an activity diary.
Sponsors
Norwegian National Advisory Unit on Rare Disorders (NKSD)
University of Oslo
Foreningen for Muskelsyke
Oslo University Hospital
Study design
Allocation
RANDOMIZED
Intervention model
CROSSOVER
Primary purpose
SCREENING
Masking
DOUBLE (Caregiver, Investigator)
Masking description
Study participants will receive an unmarked envelope consisting of all study material. The order of the study questionnaires inside the unmarked envelope will be randomized and sealed by the first researcher. The first researcher will give them to the second researcher who will again shuffle the envelopes order (without the first researcher present) before giving them to the care provider. The care provider will give the study envelope to the study participants. Therefore, investigators and care provider will be masked to the contents of the unmarked study envelope and cannot selectively assign the participants to a certain group. However, the study participants might recognize the original IPAQ if she/he received this questionnaire in the past.
Intervention model description
Two groups of people with CMT will compare an original International Physical Activity Questionnaire short form (IPAQ-sf) and a revised one with a 7-days physical activity diary. The first group will begin with the original version and end with a revised one. The second group will begin with a revised IPAQ-sf and end with the original one. Both groups will also need to complete a 7-days activity diary two times.
Eligibility
Sex/Gender
ALL
Age
18 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
* Adults with a genetically confirmed CMT diagnosis. * Residing in Norway * Age between 18 to 65 years old.
Exclusion criteria
* Had major surgery within three months prior to the study period. * Experiencing serious illness (e.g. bedridden, hospitalized).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Total physical activity duration | 16 days | Correlations of the total physical activity duration measured using original and revised International Physical Activity Questionnaire short form (IPAQ-sf) with an activity diary (in minutes/week). The original IPAQ-sf has been used in Norwegian context and available in Norwegian language. It has a criterion validity of 0.30 (95% CI 0.23-0.36) against accelerometer count and 0.30-0.46 for correlation with a physical activity diary physical activity level (in MET minutes/week). The content of the revised IPAQ-sf was formulated based on the inputs from experts, including the persons with CMT themselves in our reference group. The revised IPAQ-sf will be compared with the original IPAQ-sf in this pilot project. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Physical activity duration for different intensities from original and revised IPAQ-sf | 16 days | Correlations of the physical activity duration at three different intensities: high/vigorous, moderate, and light/walking, measured using original and revised IPAQ-sf with an activity diary (in minutes/week). Both original and revised IPAQ-sf can provide description of physical activity level in three different intensities: high/vigorous, moderate, and light/walking. In the activity diary, the Borg's scale will be used to describe intensity in categories: high, moderate, and light. The Borg's scale has weighted mean validity coefficients 0.57-0.72 for various physiological measurements, including: heart rate, blood lactate, %VO2max, VO2, ventilation, and respiration rate. |
| Qualitative inputs from the pilot study participants for all of the study instruments | 16 days | Inputs and comments from pilot study participants for the original IPAQ-sf, revised IPAQ-sf, and activity diary. In this pilot project, we provided field for comments for each point of question in all three questionnaires: original IPAQ-sf, revised IPAQ-sf, and physical activity diary. These qualitative inputs will be analysed for further development and improvement of the study instruments. |
Countries
Norway
Outcome results
None listed