A diagnosis of ALS carries a lot of unanswered questions: How fast will my disease progress? How will I cope with my loss of function? What adaptive equipment will I need, when will I need it and how will I get it?
Now a little light has been shed on the last of those questions. A group of physical and occupational therapists have conducted a pilot survey of the types of equipment used by people with ALS, and how useful they find each item at various stages of the disease. The survey also looked at methods used to obtain equipment.
The Adaptive Equipment Use Survey was conducted last spring by physical and occupational therapists at the MDA/ALS Center at Johns Hopkins University in Baltimore and the Wake Forest University Medical Center ALS Clinic in Winston-Salem, N.C. With the assistance of MDA offices in Maryland and Virginia, survey forms were sent to 200 people with ALS across the country. Of that number, 102 were returned.
"As clinicians, we were frequently frustrated with the lack of information for both patients and caregivers regarding the effectiveness - usefulness - of equipment prescribed or obtained to help manage symptoms," said survey coordinator Brenda Shaeffer, a physical therapist at the Hopkins center. "This pilot study will be a first step to providing people with ALS with evidence-based information to make the most appropriate decisions regarding equipment use."
The information also will help justify equipment purchase by insurers and other funding sources.
Bath benches most valuable
Survey respondents rated their disease progression using the ALSFRS (Amyotrophic Lateral Sclerosis Functional Rating Scale). This 10-question form assesses a person's ability to perform daily living tasks. The highest score (40) indicates normal function, while the lowest (0) indicates no independent function.
The survey showed that the greatest equipment use is by people in the 10-29 ALSFRS score range, with lesser needs at either end of the scale. Augmentative communication devices were most useful for people with scores of 10-19, although approximately a quarter of those scoring 20-29 also reported needing the devices.
Bath benches and augmentative communication devices were rated the most essential of the eight categories of equipment, followed by (in order): power beds, power wheelchairs, walkers, patient lifts, manual wheelchairs and canes.
Paying for it
Most people answering the survey said they obtained their equipment through insurance or private funds.
About 14 percent obtained manual wheelchairs or walkers with the help of organizations such as MDA.
Loan closets were used primarily for manual wheelchairs (19 percent), lifts (25 percent) and bath benches (15 percent).
Most communication devices were obtained with personal funds or private health insurance. (In 2001, Medicare began covering augmentative and alternative communication devices.)
While this preliminary study has value, its authors caution that it's too small to reliably predict equipment needs. They hope to expand the survey to more people.