Table 3 Identifies deficits in Physiotherapy research by outcome
From: Physiotherapy for epidermolysis bullosa: clinical practice guidelines
Current outcome | General areas for future research |
|---|---|
Optimize developmental motor milestone attainment | Comparative studies regarding attainment of gross motor skills between infants with and without with EB Evaluate effectiveness of prone skill achievement between infants with and without EB Evaluate timeframe of typical developmental achievement for infants and toddlers with EB Studies to support early education/home exercise program for developmentally age appropriate gross motor milestones and handling from birth |
Optimize safe and functional mobility in their natural environment | Longitudinal study to quantify functional gross motor skills through lifespan of persons with EB Long term retrospective study on effectiveness of an individualized physiotherapy home exercise program and functional mobility Long term prospective study regarding mobility devices and duration of maintaining independent functional mobility |
Optimize ambulation endurance and cardiorespiratory function | Study to assess validity and reliability of Standardized Assessments and Outcomes Measures on people living with EB Evaluate effectiveness of a walking program on levels of endurance for people living with EB Assess whether use of tricycle/bicycle, rather than a wheelchair increase endurance and cardiorespiratory system lead to prolonged ambulation skills Identify cardiovascular endurance changes in persons with EB over a designated period of time Study cardiomyopathy and/or muscular dystrophy in persons with EB and exercise capacity Evaluate if techniques such as massage and/or compression garment would be effective in reducing edema |
Optimize ability to safely bear weight | Long term study of lower extremity range of motion and direction of dressing application to prevent contractures Efficacy of supportive orthotics for range of motion and strength to bear weight for major types of EB |
Optimize interaction with environment | Identify likely prognostic timeframe when durable medical equipment will be needed for the major types of EB Evaluate the efficacy of power wheelchair versus power scooter in the EB population |
Improve access to appropriate physiotherapy services | Delphi research project incorporating the clinical expertise of international physiotherapists who care for persons with EB |