Investigation Of Factors Affecting Hand Functions in Nonambulatory Patients With Duchenne Muscular Dystrophy

NCT03521271 | Completed

• 1 other identifier: GO 17/307
• Study Type: observational
• Target: 23
• Locations: 1 country
• Sites: 1

Brief Summary

The aim of this study, determining the factors affecting the hand functions of children with Duchenne Muscular Dystrophy who have lost their independent ambulatory ability and determining the effects on the overall upper extremity performance and quality of life of the determined factors.

Conditions

Duchenne Muscular Dystrophy

Keywords

Duchenne Muscular Dystrophy; Upper limb; Hand functions; Performance; Grip Strength

Outcome Measures

Primary Outcomes (9)

• Brooke Upper Extremity Functional Classification (1-6)

  Children's functional levels were assessed with Brooke Upper Extremity Functional Classification (BUEFS) and children with a BUEFS score between 1-5 were included in the study. 1. Starting with arms at sides, can abduct arms in a full circle until they touch above head 2. Can raise arms above head only by flexing elbow or using accesory muscles 3. Cannot raise arms above head but can raise a glass of water to mouth (using both hands if necessary) 4. Can raise hands to mouth but cannot raise a glass of water to mouth 5. Cannot raise hand to mouth but can use hands to hold pen or pick up pennies from table 6. Cannot raise hands to mouth and has no useful function of hands

  2 minutes

• Passive joint range of motion

  Passive range of motions were assessed with goniometer and recorded limitations.

  10 minutes

• Upper extremity muscle strength

  Hand held dynamometer

  20 minutes

• Thumb opposition

  Thumb opposition was assessed by Kapandji score (1-10). Score Location achieved 1. Radial side of the proximal phalanx of the 2nd phalanx 2. Radial side of the middle phalanx of the 2nd phalanx 3. Tip of the 2nd phalanx 4. Tip of the 3th phalanx 5. Tip of the 4th phalanx 6. Tip of the 5th phalanx 7. Distal interphalangeal joint crease of the 5th phalanx 8. Proximal interphalangeal joint crease of the 5th phalanx 9. Metacarpophalangeal joint crease of the 5th phalanx 10. Distal palmar crease

  2 minutes

• Lateral, tripod, two-point pinch strength

  Pinchmeter

  3 minutes

• Performance of the upper extremity

  Performance of the Upper Limb (PUL) (0-74) is including three dimension: * Shoulder dimension (0-16) * Elbow dimension (0-34) * Distal dimension (0-24)

  15 minutes

• Hand function

  ABILHAND-Kids (0-36)

  3 minutes

• Activity limitations

  ACTIVLIM (0-36)

  3 minutes

• Gross grip strength

  Hand dynamometer

  2 minutes

Secondary Outcomes (2)

• Quality of life assessment of children (0-100)

  5 minutes

• Quality of life assessment of parents (0-100)

  5 minutes

Eligibility Criteria

• Age: 8 Years - 16 Years
• Sex: male
• Healthy Volunteers: No
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

Patients who applied to the Pediatric Neuromuscular Diseases Unıt of Hacettepe University Physiotherapy and Rehabilitation Department

You may qualify if:

• Having a Duchenne Muscular Dystrophy diagnosis by a practicing physician,
• Between the ages of 8-16 years,
• Having lost ambulation ability,
• Brooke Upper Extremity Functional Classification (1-5)
• To have motivation and co-operation with physiotherapist for evaluations to be made

You may not qualify if:

• To maintain the capacity of independent ambulance,
• Having cooperative disorder or serious mental disorder,
• Any spinal and / or upper extremity injuries and / or surgery in the last 6 months,
• Having any systemic disease other than DMD,
• Not volunteering to participate in the study

Sponsors & Collaborators

• Hacettepe University: lead

Study Sites (1)

Hacettepe University

Ankara, Samanpazarı/Ankara, 06100, Turkey (Türkiye)

Location

MeSH Terms

Conditions

Muscular Dystrophy, Duchenne

Condition Hierarchy (Ancestors)

Muscular Dystrophies; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Neuromuscular Diseases; Nervous System Diseases; Genetic Diseases, X-Linked; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Master Student

Study Record Dates

• First Submitted: April 19, 2018
• First Posted: May 11, 2018
• Study Start: April 5, 2017
• Primary Completion: January 26, 2018
• Study Completion: January 26, 2018
• Last Updated: May 11, 2018

Record last verified: 2018-05

Locations

TU (1)