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Overview:
There are many forms of assessment tools that are available to assess Duchenne Muscular Dystrophy (DMD). Determining the effectiveness of these assessment tools varies due to individualized progression of DMD. Being aware of the common symptoms through visual observation and questionnaires will increase understanding of individualized progression of DMD for appropriate selection of assessment tools and to increase effective outcomes in the therapeutic management of DMD.
Quality of Life
Health-related quality of life (HR-QOL) is an important outcome for health in children and adults with neuromuscular disorders. When evaluated, HR-QOL encompasses various factors such as physical, emotional, social, and cognitive factors. 22, 23, 24, 25
Through research, we have discovered that there are limited resources to assess QOL of life in DMD patients. However, by using the assessments listed below, clinicians will be able to understand factors that affect QOL.
Effective QOL Assessments:
Individualized Neuromuscular Quality of Life Questionnaire (INQOL)
Barthel Index
Short Form Health Survey (SF-36)
Supporting Evidence of INQOL and Barthel for Measuring QOL: A study performed by Vincent et al., (2007) found a strong relationship between independence scores on the Individualized Neuromuscular Quality of Life Questionnaire (INQOL) and scores on the Barthel Index, which supported the hypothesis that patients who reported difficulties with mobility and self-care tasks will report lower levels of independence and greater dissatisfaction with their degree of independence. The study also showed minor changes in INQOL dimensions over the follow-up period. The researchers found no set pattern of how muscle disease impacts many areas of life. The domains that make up the QOL spectrum were physical, psychological, and social functioning. 27
The INQOL is not able to capture mental health-related QOL information as well as the SF-36 does, but it is still considered a valid and reliable measure to assess physical and mental components of quality of life in people suffering from muscle-specific diseases. 28
Supporting Evidence of SF-36 for Measuring QOL: "The SF-36 measures eight scales: physical functioning (PF), role physical (RP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SF), role emotional (RE), and mental health (MH)" 21
Caregiving
Caregiving
Caregivers of children with chronic health conditions can develop psychological, emotional, physical, social, and financial distress. In addition, caregiver experiences are typically different depending on the severity of their child's medical and developmental needs as well as available social resources. 29, 30, 31, 32
A study performed by Amtmann et al., (2020) developed two new measures of caregiver stress and benefits entitled the University of Washington Caregiver Stress Scale (UW-CSS), and the University of Washington Caregiver Benefit Scale (UW-CBS). The researchers expressed that UW-CSS and UW-CBS item banks and short forms are reliable and “suitable for caregivers of all children". A correlation was also found between the administered assessment and the Pediatric Renal Caregiver Burden Scale, the Perceived Stress Scale, the PROMIS Anxiety Scale, and the PROMIS Depression Scale.33
Disease Progression
Disease Progression
The Duchenne Muscular Dystrophy Functional Ability Self-Assessment Tool (DMDSAT) is an assessment that allows individuals with DMD to measure and categorize their functional ability level throughout their lifetime. This assessment is beneficial for therapists, caregivers, and patients with DMD. The items of the assessment evaluate arm function, mobility, ventilation status, and common transfers required for activities of daily living.34
The DMD Video Assessment was deemed useful for improving communication between caregivers and clients. Clinician feedback on the training materials needed for this tool confirmed that it was valid, feasible, and useful to use with children suffering from DMD and their parents. Overall, results showed that the DMD Video Assessment contains appropriate physical activities to help evaluate the physical performance of children with DMD. This assessment is convenient because it can be done in the home, and it helps the caregivers and clinicians have relatively the same understanding of the physical deficits the child is facing. 35
Access to Other Effective Assessment Tools
Access to Other Effective Assessment Tools
Below are the links to a variety of assessments that can be used by occupational therapists and children with DMD.
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