Researchers developed and piloted a survey about supportive care in ALS
Original source
Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care. (opens in a new tab)Compass summarised this from the study's abstract.
Study details
- Studied in
- Human
A new survey was developed to assess how people with ALS and their care partners experienced supportive care throughout the illness. In a pilot at one site, 18 bereaved care partners gave detailed feedback on physical, emotional and practical support, education, preparation and bereavement care. The researchers said the survey was feasible and acceptable and plan to test it at more centers.
Why this matters
The survey could help ALS care teams identify aspects of supportive care to preserve and improve. It does not change treatment or show better patient outcomes; further testing is needed before its broader usefulness is known.
Limitations and context
This was a survey-development study with a single-site pilot involving 18 bereaved care partners whose relatives had died three to 15 months earlier. The study assessed feasibility and the detail of feedback, not whether using the survey improves care or outcomes. The tool still needs testing at additional centers.