Feasibility and validity of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI).
A one-page doctor checklist spots adults with ID who may need palliative care within the year.
01Research in Context
What this study did
Doctors tested a new 30-item form called PALLI. It asks about pain, eating, walking, and mood.
They gave the form to adults with intellectual disability. Doctors scored each item from zero to three.
The team checked if the scores could predict who might die within one year.
What they found
The tool worked. Higher scores matched a higher chance of dying in the next 12 months.
Staff said the form was easy to use and took less than 15 minutes to finish.
How this fits with other research
Sievers et al. (2020) built a new math rule for the PAI to spot autism in able adults. Both studies create quick screeners for adults with ID or ASD.
Cohen et al. (1993) validated a parent interview for toddlers. Like PALLI, it turns carer answers into clear risk flags.
Waldron et al. (2023) used computer words to find autistic adults in health records. PALLI uses doctor ratings instead, yet both aim to catch a hidden group early.
Why it matters
Adults with ID often die sooner than expected. PALLI gives you a fast way to decide who needs hospice or pain help now. Add it to your intake packet. One page, five minutes, and you can start life-saving comfort talks before crisis hits.
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02At a glance
03Original abstract
BACKGROUND: There is a need for a specific tool that supports healthcare professionals in timely identifying people with intellectual disabilities (ID) in need of palliative care. Therefore, we developed PALLI: a tool for screening deteriorating health, indicative of a limited life expectancy. AIMS: We evaluated feasibility, construct validity and predictive validity of PALLI. METHODS: 190 people with ID likely to be in need of palliative care were included. Physicians and daily care professionals (DCPs) completed PALLI and provided information on health outcomes at baseline, after 5-6 months and after 10-12 months. Linear Mixed Models and Generalized Linear Mixed Models were used to test validity. RESULTS: Feasibility was adequate: physicians and DCPs were able to answer most items with 'yes' or 'no' and within a short amount of time. Construct validity was promising: a higher PALLI score at baseline was related to a higher level of decline in health, a higher symptom burden, a lower quality of life and more ADL-dependency at baseline. Predictive validity: only a higher physician-reported PALLI score at baseline significantly increased risk of death within 12 months. CONCLUSIONS: PALLI shows promising feasibility and validity and has potential as a tool for timely identifying people with ID who may benefit from palliative care.
Research in developmental disabilities, 2018 · doi:10.1016/j.ridd.2017.10.020