Pressure Area
Conditions
Keywords
wheelchair users, complex power wheelchairs, progressive disorders
Brief summary
There can be barriers for clients with progressive disorders who are power wheelchair users and their caregivers that prohibit them from performing pressure relief. Clients may struggle with consistent performance of pressure relief and may not recall the importance, have methods to perform, or be able to perform due to weakness or other disease changes.
Detailed description
Study the population of power wheelchair users with progressive disorders at the Neurology Specialty Care - Edgehill, Carolina Neuromuscular Amyotrophic Lateral Sclerosis (ALS)/ Muscular Dystrophy Association (MDA) Center to identify barriers, provide potential solutions, and provide education and training to both increase knowledge and understanding of pressure relief options and processes as well as to overcome these perceived barriers amongst the clinic population. Current adults of the Neurology Specialty Care practice who are complex power wheelchair users will be eligible for this project as an extension of usual care.
Interventions
BEHAVIORALeducation and training
education and training at a regularly scheduled occupational therapy clinic visit will be performed with handouts, verbal education, hands-on training, and video training
Sponsors
Wake Forest University Health Sciences
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Intervention model description
Clients with neuro-progressive disorders (ALS, multiple sclerosis, Parkinson's, muscular dystrophies, and spinal muscular atrophy) who also use complex power wheelchairs.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Adult 18 years or older * Diagnosis of a progressive disorder (amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), muscular dystrophy (MD), spinal muscular atrophy (SMA), Parkinson disease (PD) * Current clinic client at the Neurology Specialty Care Edgehill clinic * Currently using a complex (group 3) power wheelchair with power positioning of at least tilt/recline * Currently sitting in the chair at least 2 consecutive hours/day
Exclusion criteria
* Dementia as noted by Medical Doctor / speech-language pathologists (SLP) in medical records * Inability/unwillingness to control wheelchair power features (client) * Unwillingness to be monitored, educated, trained by study staff * Uses other mobility devices indoors (scooter, basic power wheelchair) more than complex power wheelchair * Further exclusions may be added in future protocol versions
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Likert Pain Scale Scores | Baseline | 0: Relaxed and comfortable. 1 to 3: Mild discomfort. 4 to 6: Moderate pain. 7 to 10: Severe discomfort/pain - higher scores equaling more discomfort/pain |
| Standard Staging for any Pressure Injuries | Baseline | Stage 1 pressure injuries are not open wounds Stage 2 pressure injuries are open wounds Stage 3 pressure injuries extend through the skin into deeper tissue and fat but do not reach muscle, tendon, or bone Stage 4 pressure injuries extend to muscle, tendon, or bone Higher scores equaling worse condition |
Countries
United States
Outcome results
None listed