Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory.
Trees A L Zalmstra, Agnes Elema, Willemijn van Gils and 3 others
PMID 33675148WHAT IT FOUND
Caregivers and professionals found a new Dutch caregiver-rated questionnaire for adults with severe non-ambulatory disabilities meaningful, understandable and usable.
It takes about 20 minutes to complete, but further testing is needed before routine clinical use.
Key findings
01Proxy ratings by parents or direct support professionals were used because self-report is generally highly challenging and nearly impossible for adults with severe motor and intellectual disabilities who are non-ambulatory.
02The final CPADULT version contained 42 items across six domains, and 100% of interview participants considered its output scales suitable.
03In the expert survey, 34 of 43 items were accepted in original form, 8 were accepted with adaptations, and 1 item was rejected.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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 instrument is still developmental, and reliability and validity need further testing. The interview group was small, with four participants. The questionnaire is written in Dutch, so it has a small range of use. Proxy ratings may be influenced by the caregiver's own perceptions and quality of life.
The easy way to misread this
Do not conclude that the CPADULT improves care or can replace existing assessments. This study only developed and tested whether caregivers and experts found the questionnaire meaningful and usable, and further testing is needed.