Duchenne Muscular Dystrophy
Conditions
Keywords
Physical activity level
Brief summary
The aim of this population based study is to examine, quantify and describe physical activity level in Norwegian boys with DMD, and to compare the level of physical activity level between boys with DMD and age matched healthy boys. A co-project will validate ActiGraph accelerometry to measure physical activity in boys with DMD.
Detailed description
International guidelines recommend regular physical activity for boys with DMD, and participation in physical activity plays a key role in the management. Paradoxically, patients with severe neuromuscular disease like DMD, have considerable limitations to participate in such activities. Limitation may be muscle weakness, pain, fatigue, reduced mobility and overall function, and also limited knowledge of physical activity benefits among health care personnel. Limited participation leads to a sedentary lifestyle, and gradual under-use of still functioning muscles may cause secondary deterioration in DMD. The current physical activity level amongst Norwegian DMD's are unknown, and physical activity registration and self-reported questionnaire will be examined in this study.
Interventions
BEHAVIORALPhysical activity registration
At start, participants and parents fills out a Self-report questionnaire and the UngKan-3 Questionnaire, before a seven day physical activity registration takes place by use og ActiGraph. A physical activity diary are filled out every evening while the physical activity registration takes places.
Sponsors
Norwegian School of Sport Sciences
Oslo University Hospital
Haukeland University Hospital
Study design
Observational model
OTHER
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
MALE
Age
6 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* Boys with conclusive diagnosis of Duchenne Muscular disease, attending Norwegian pediatric rehabilitation clinics. * Signed written consent * Able to answer questionnaires with help from parents, care giver(s) or health care professional with regular follow up of the participants.
Exclusion criteria
* Lack of consent. * Language difficulties * Cognitive dysfunction or mental retardation leading to difficulties in answering the questionnaires adequately
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Physical activity registration | Seven days | An Actigraph will be provided and worn at pre set time frame (Seven days including weekend). Data extracted are counts per minutes, and are measurements of movement performed in both vertical and horizontal axis. The counts will be used to quantify the time the participant is inactive, low, moderate and / or in vigorous physical active. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Leisure time physical activity | Day 1 | The UngKan-3 questionnaire is a self-reported/parent-reported instrument, developed to measure leisure time physical activity, diet, media habits and sleep routine. The questionnaire is former used in a national cross-sectional survey amongst Norwegian school students, developed by the Norwegian School of Sport Sciences and Norwegian Institute of Public Health. |
| Self-Reported Questionnaire | Day 1 | Self-administrated questionnaire developed to describe participants function, on-going treatment, movement aid, types of physical activities |
Other
| Measure | Time frame | Description |
|---|---|---|
| Physical Activity diary | Day 1 | During physical activity registration with use of ActiGraph monitor, the participants and parents are asked to fill out a diary, describing type of physical activity been performed, for how long the physical activity was performed, how tired the participants became, and how did the participant enjoy the activity being performed. In addition the participants is asked to give a summary of the week regarding to name the most enjoyable activity this week and the reason why, and to describe if there occurred something unusual that increased or decreased their physical activity level more than regular. |
Countries
Norway
Outcome results
None listed