Researchers in Germany studying standards of care in amyotrophic lateral sclerosis (ALS) patients found a high unmet need for assistive technology devices.
The cohort study, “Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach,” was published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
Assistive technology devices (ATDs) are used to aid a patient’s mobility and compensate for disease-related communication deficits. ATDs also are vital for the social participation of ALS patients.
Some studies have reported that accessing ATDs can be problematic for patients and their caregivers. Among the possible reasons for this are limited availability, inadequate provision of ATDs, and a high administrative burden during the process.
Therefore, more detailed information on ATDs is needed to determine the current standards of care and to identify potential gaps in the procurement process.
The researchers set out to determine the frequency of ATDs among ALS patients, the failure rate of ATD access, and the causes of failed procurement, and to identify delays in ATD access.
They designed a cohort study to investigate the access of 11,364 ATDs by 1,494 patients in 12 German ALS centers over four years. Patients had entered a case management program for ATDs, including a systematic assessment of ATDs on a digital management platform.
Results showed that the ATDs needed most were wheelchairs, which were requested by 65 percent of patients, orthoses, requested by 52 percent of patients, bathroom adaptations, requested by 49 percent of patients, and communication devices, requested by 46 percent of patients.
When looking at how many ATDs were needed for each patient, the range appeared to be wide, with 45 percent of patients needing only one to four, 48 percent needing five to 20, and 7 percent needing more than 20.
Researchers then looked at the rate of procurement among patients and found that 70 percent of all requested ATDs had been effectively delivered.
They also found high procurement failure rates for ATDs that were vitally important to ALS patients, including a failure rate of 52 percent for powered wheelchairs, of 39 percent for communication devices, and of 21 percent for orthoses.
Among the main reasons cited for these failures were refusals by health insurances, decisions by patients, and patient deaths before device delivery.
“The need for ATD was highly prevalent among ALS patients. Failed or protracted provision posed substantial barriers to ATD procurement,” researchers wrote.
“Further studies are needed to develop medical indication criteria for ATD and to incorporate them in national and European ALS treatment guidelines,” they added.