Physical Activity Level of Norwegian Boys with Duchenne Muscular Dystrophy

Haukeland University Hospital28 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

Conditions

Duchenne Muscular Dystrophy

Interventions

Physical activity registrationBEHAVIORAL

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.

Eligibility

Sex: MALEMin age: 6 YearsMax age: 18 Years

Medical Language ↔ Plain English

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

Locations (1)

Haukeland University Hospital

Bergen, Hordaland, Norway

Outcomes

Primary Outcomes

Physical activity registration

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.

Time frame: Seven days

Secondary Outcomes

Leisure time physical activity

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.

Time frame: Day 1

Self-Reported Questionnaire

Self-administrated questionnaire developed to describe participants function, on-going treatment, movement aid, types of physical activities

Time frame: Day 1

Data from ClinicalTrials.gov

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