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Duchenne muscular dystrophy (DMD) is an X-linked recessive neuromuscular disorder predominantly affecting boys and men, with an estimated incidence of 1 in 3,800 to 1 in 6,200 live male births. This condition leads to progressive muscle weakness due to the absence of the dystrophin protein, which is essential for maintaining muscle cell integrity. Symptoms and functional impairments typically become apparent by the age of two, and individuals with DMD have an average life expectancy of around 28 years. Treatment is generally multifaceted, focusing on enhancing quality of life (QOL) and postural control. The Alexander technique is employed to improve QOL and postural tone, as well as to modify body schema, with reported benefits from these changes. This method leverages spatial attention and executive functions that influence basic motor skills through targeted attention, intention, and haptic communication, thereby enhancing the QOL and postural control of the upper limbs. The aim of the study is to determine the effects of Alexander's technique on postural control of upper limb and quality of life in children with duchenne muscular dystrophy.
Duchenne muscular dystrophy (DMD) is a progressive, disabling genetic neuromuscular disorder in children caused by an absence of dystrophin protein, that helps maintain muscle integrity. It is inherited in an X-linked recessive manner. Duchenne muscular dystrophy (DMD) was first identified by the French neurologist Guillaume Benjamin Amand Duchenne in the 1860s. However in 1987, the protein linked to this gene was discovered and named dystrophin.The estimated incidence in children is 1 in 3,800. The absence of dystrophin in muscle cells makes them vulnerable and prone to damage. The initial symptoms include trouble climbing stairs, a waddling gait, and frequent falls, which typically appear in patients around the ages of 2 to 3. Muscle weakness is the primary symptom of Duchenne muscular dystrophy (DMD). Initially, the weakness affects the proximal muscles, followed by the distal limb muscles, leading to wheelchair dependency and severe complications in their late teens. Typically, the lower extremity muscles are impacted before the upper extremity muscles, children may struggle with activities such as jumping, running, and walking. Later on the heart and respiratory muscles are also affected, resulting in impaired cardiac and pulmonary function. Another type related to DMD is Becker muscular dystrophy (BMD), which is a milder form of the disease caused by deletions in the dystrophin gene. This results in comparatively mild muscle weakness, allowing individuals to maintain mobility throughout their lives, although it can also lead to severe muscle dysfunction similar to that seen in Duchenne muscular dystrophy (DMD). As the disease progresses, maintaining upper extremity function becomes crucial for preserving the ability to independently perform daily activities, such as self-care, using a computer, and operating manual or powered wheelchairs. Therefore, clinical assessments of disease-modifying treatments should prioritize the preservation of pulmonary, cardiac, and upper limb function to enhance quality of life.
Commonly used outcomes to evaluate Duchenne muscular dystrophy (DMD) include the Gowers' maneuver, the time taken to get up from the floor, the 6-Minute Walk Test, increased tendency to fall compared to peers, and speech difficulties, all of which reflect the progression of the disease. In children with Duchenne muscular dystrophy (DMD), a multidisciplinary approach is employed to provide supportive therapies, such as treadmill walking, which helps enhance adaptive mechanisms necessary for coordination, body orientation, balance control, and maintaining an upright position. Additionally, cycling is considered an aerobic exercise that improves repetitive functional activities.
In patients with Duchenne muscular dystrophy (DMD), the upper limb maintain their strength and function longer than any other muscle group, unlike the respiratory system. Notably, the distal muscles of the upper limb tend to preserve their function for an extended period, even in the later stages of the disease to improve quality of life. Low-intensity aerobic exercises aimed at enhancing activity levels in children with Duchenne muscular dystrophy (DMD), such as assisted bicycle training, provide valuable practices that promote effective management and boost confidence, ultimately leading to an improved quality of life.The quality of life and life expectancy of patients with Duchenne muscular dystrophy (DMD) have improved due to advancements in technology and multidisciplinary care. Proposed treatments have effectively slowed disease progression, delaying both functional dependence and cardio respiratory impairments.
Finding optimal treatment for Duchenne muscular dystrophy has become challenging due to the complexity of the condition. The treatment options for Duchenne muscular dystrophy vary based on the child's symptoms and age, with the goal of improving quality of life and postural control. While there are various tools available to assess upper limb function, postural control, and quality of life, these assessments are particularly important at stages when patients experience a loss of postural control and a decline in quality of life. The Alexander technique is used to enhance quality of life and postural tone, while also helping to modify body schema.This approach emphasizes the mind-body interaction, consciously inhibiting inefficient movements to enable the body to generate stronger and more comfortable movements, that allows the head and shoulder to balance forward and upward, thereby improving postural control of the upper limbs. Given that postural control and improved quality of life are benefits of the Alexander technique, it is based on the AID method. Here, A stands for awareness of muscle tone and poor postural habits, I represents the conscious inhibition of ineffective movements, and D refers to direction.
The Alexander technique is recognized as an effective treatment for upper limb postural control and quality of life; however, its specific effects on Duchenne muscular dystrophy (DMD) remain no known. So there should a study on effect of the Alexander technique on upper limb postural control and quality of life in children with DMD. Therefore the aim of this to determine the effects of the Alexander technique on upper limb posture control and quality of life in children with Duchenne muscular dystrophy
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Group A, Alexander Technique Protocol Group | Active Comparator | Participants in this group will perform routine physical therapy exercises in addition with Alexander technique exercise. The routine exercises will consist of gentle stretching and strengthening exercise. 40 mins program consist of 12 training sessions, 2 per week. |
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| Group B, Routine Protocol Group | Active Comparator | Participants in this group will perform routine physical therapy exercises only. The routine exercises will consist of gentle stretching and strengthening exercise. 40 mins program consist of 12 training sessions, 2 per week. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Alexander Technique Program | Other | Alexander technique involves postural and proprioceptive re-education and focuse on teaches the correct use of postural mechanism, coordination of trunk and head as a core relationship for good movement. In DMD neck muscles are compromised due to less amount of dystrophin and adopt bad posture of neck which decrease postural control and QOL. Through this technique participants will complete 12 training sessions within 6 weeks (2 per week) of 40 mins. Will examining body habits and patterns during various activities (5 min). Teaching and applying the basic principles of Alexander technique, including inhibition, primary control, and direction in various activities, such as sitting, standing, walking, studying, and lifting objects using tactile and verbal feedback (30 min). These exercises will perform to improve the neck, shoulder and upper limb muscles for strengthening and improve to upper limb postural control and quality of life. |
| Measure | Description | Time Frame |
|---|---|---|
| Postural Control of Upper Limb | Upper limb postural control will be assessed using the Postural Control of the Upper Limb (POUL) scale. The tool evaluates scapular alignment, shoulder stability, elbow control, wrist posture, and hand positioning during functional tasks. Higher scores indicate better postural control. | 3 months |
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Inclusion Criteria:
Exclusion Criteria:
Duchenne muscular dystrophy (DMD) is an X-linked recessive neuromuscular disorder predominantly affecting boys and men, with an estimated incidence of 1 in 3,800 to 1 in 6,200 live male births. This condition leads to progressive muscle weakness due to the absence of the dystrophin protein, which is essential for maintaining muscle cell integrity.
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| IMRAN AMJAD, PHD | Contact | 9233224390125 | imran.amjad@riphah.edu.pk | |
| Muhammad Asif Javed, MS-PT | Contact | 923224209422 | a.javed@riphah.edu.pk |
| Name | Affiliation | Role |
|---|---|---|
| Muhammad Hassan Tahir, MS-PT | Riphah International University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Psrd Hospital | Recruiting | Lahore | Punjab Province | 54000 | Pakistan |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 33602943 | Background | Duan D, Goemans N, Takeda S, Mercuri E, Aartsma-Rus A. Duchenne muscular dystrophy. Nat Rev Dis Primers. 2021 Feb 18;7(1):13. doi: 10.1038/s41572-021-00248-3. |
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The current study will be randomized control trial, data will be collected from Pakistan society for the Rehabilitation of Disabled, Lahore (PSRD). Then study will include 33 patients equally divided into two groups and randomly allocated. Inclusion criteria for the study will be children with duchenne muscular dystrophy patient with age between 5 to 9 yrs with either gender. Patients with any metabolic disorder, other accidental disorder, recent history of surgery, psychiatric disorder will be excluded from the study. Experimental group will perform both Alexander's technique and routine physical therapy (RPT), Control group will perform routine physical therapy. Outcomes to be analyzed will be posture control of upper limb and quality of life. Data collection will be done before and after the intervention. Tools used for data collection will be PUL 2.0 for DMD for posture control of upper limb and PedsQL 4.0 for DMD-QOL for assessment of quality of life.
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Participants will get separate treatment protocols and possible efforts will be put to mask the both groups about the treatment
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