The Intellectual Disability Frailty Index Predicts 10-Year Mortality Within the HA-ID Cohort.
Marco C van Maurik, Mylène N Böhmer, Patrick J E Bindels and 2 others
Higher frailty scores in adults with intellectual disability predict 10-year mortality.
Each 0.01-point increase in the ID-FI score carries a 6% higher death risk, and the severely frail group faces 10 times the death risk of the relatively fit.
Key findings
1After adjusting for age, sex, Down syndrome, and level of ID, each 0.01-point increase in the ID-FI score was associated with a 6% higher mortality risk (HR 1.06, 95% CI 1.05–1.07).
2Compared to the relatively fit group, severely frail participants had a mortality risk of HR 10.00 (95% CI 6.49–15.43), with risk increasing stepwise across each frailty category.
3The ID-FI Short Form showed a similar pattern, with each 0.01-point increase associated with a 5% higher mortality risk (HR 1.05, 95% CI 1.04–1.05).
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What it does not show
Only a single baseline frailty measurement was used. The paper does not know whether frailty increased gradually or spiked before death, so the score reflects one snapshot, not a trajectory. Loss to follow-up was concentrated among participants with mild ID in community-based settings, skewing the sample towards those in centralised, specialised care. The authors note this may limit generalisability to more independent adults with ID. 42 participants (4.3%) were excluded because their status could not be confirmed, and 38 (3.9%) were lost to follow-up due to relocation. The study is observational. It shows that higher frailty scores are associated with higher mortality, not that reducing frailty would reduce mortality. The overall predictive accuracy is fair (AUC 0.72), not excellent. The index identifies group-level risk, not individual prognosis. Single country (Netherlands), single care system. The care organisations covered about 10% of the Dutch ID population in formal care.
Declared interests
Funded by ZonMw (Dutch research council) and the three Dutch care organisations (Abrona, Amarant, Ipse de Bruggen) that participate in the HA-ID consortium, plus the Department of General Practice at Erasmus MC. The authors state the care organisations were not involved in data analysis, interpretation, or manuscript preparation. No conflicts of interest declared.
The easy way to misread this
Do not treat a single ID-FI score as a definitive prediction of an individual's survival. The overall discrimination is fair (AUC 0.72), the analysis used one baseline measurement with no repeated assessments, and the hazard ratios describe group-level risk, not individual prognosis. A score in the mildly frail range does not mean a patient will die; it means their risk is higher than the relatively fit group's.
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