The Assistive Device Situation for ALS Patients in Norway.
Jenny Pernilla Rolland, Mari-Anne Myrberget, Tore Wergeland Meisingset
PMID 34497481WHAT IT FOUND
Patients and therapists found specialist hospital care effective but municipal follow-up inconsistent due to staff turnover and lack of ALS expertise.
Upper limb devices for dressing and eating were described as inadequate. Rapid disease progression often rendered specially adapted equipment obsolete before delivery.
Key findings
01Half of respondents reported deficiencies in assistive devices for upper extremities, particularly for dressing and eating, leading to dependency on others.
02Caregivers experienced frustration with primary healthcare services due to lack of continuity, high staff turnover, and insufficient expertise in ALS device use.
03Rapid disease progression meant that by the time customized assistive devices were delivered, patients could often no longer use them.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The study excluded patients in the late or terminal phase and those on invasive ventilation, so findings do not reflect the experiences of those with the most advanced disease. All patients had follow-up in established specialist ALS teams, which may bias the positive ratings of specialist care and mask issues present in areas without such teams. The study was not designed to directly compare specialist and primary healthcare services, though differences were noted. Findings are specific to the Norwegian healthcare system's structure (specialist vs. municipal).
Declared interests
The authors declare no conflicts of interest. The study was approved by the Regional Committee for Medical and Health Research Ethics.
The easy way to misread this
Do not assume that specialist hospital care models are replicable in all community settings. The study highlights a significant gap in municipal/primary care expertise and continuity, meaning patients discharged to local services may receive inadequate support for complex assistive technology needs.