Healthcare trajectories diverge years before Huntington disease is recorded in claims: a nationwide French matched cohort study
Abstract
Background: Huntington disease (HD) develops years before it is formally recorded, yet whether this generates measurable healthcare demand, and when, is unknown. We aimed to determine when trajectories of incident HD diverge from matched controls. Methods: Retrospective matched cohort study using the French National Health Data System. Adults with incident HD (2018 to 2024; ≥2 hospital visits or ≥1 long-term registration for nternational Classification of Diseases, 10th Revision (ICD-10) G10 or F02.2; no HD code in the prior 9 years) were each matched to five controls on sex, age and deprivation. Recurrent events were modelled from 9 years before to 7 years after the first HD record. Results: Among 2659 cases and 13 295 controls, divergence preceded the first record by 6 to 8 years. Antipsychotic use rose earliest (8 years prior, HR 1.54, 95% CI 1.31 to 1.80). From 6 years prior, neurology (HR 1.53, 95% CI 1.06 to 2.22), psychiatry (HR 1.25, 95% CI 1.04 to 1.47) and speech therapy (HR 2.16, 95% CI 1.46 to 3.19) diverged. Before the record, neurology consultations occurred in 50.8% of cases versus 10.0% of controls, psychiatry consultations in 33.9% vs 10.0% and speech therapy in 8.5% vs 0.6%. After the record, divergence widened: neurology peaked at 3 years (HR 5.44, 95% CI 3.94 to 7.54) and antipsychotic use at 5 years (HR 3.63, 95% CI 3.06 to 4.30), while physiotherapy emerged only afterwards (4 years, HR 3.10, 95% CI 2.89 to 3.33). Conclusions: HD generates substantial care years before diagnostic coding. Neuropsychiatric and communicative demand precedes motor-related rehabilitative care by several years, defining a measurable window for earlier referral.
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BibTeX
@article{dibling2026healthcare,
title = {{Healthcare trajectories diverge years before Huntington disease is recorded in claims: a nationwide French matched cohort study}},
author = {Marc Dibling and Anna Heinzmann and Claire Ewenczyk and Alexandra Durr and Sophie Tezenas Du Montcel},
journal = {Journal of Neurology, Neurosurgery and Psychiatry},
year = {2026},
month = oct,
doi = {10.1136/jnnp-2026-339550},
url = {https://hal.science/hal-05839771v1},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Healthcare trajectories diverge years before Huntington disease is recorded in claims: a nationwide French matched cohort study
AU - Marc Dibling
AU - Anna Heinzmann
AU - Claire Ewenczyk
AU - Alexandra Durr
AU - Sophie Tezenas Du Montcel
PY - 2026
DA - 2026/10/22
JO - Journal of Neurology, Neurosurgery and Psychiatry
DO - 10.1136/jnnp-2026-339550
UR - https://hal.science/hal-05839771v1
AB - Background: Huntington disease (HD) develops years before it is formally recorded, yet whether this generates measurable healthcare demand, and when, is unknown. We aimed to determine when trajectories of incident HD diverge from matched controls. Methods: Retrospective matched cohort study using the French National Health Data System. Adults with incident HD (2018 to 2024; ≥2 hospital visits or ≥1 long-term registration for nternational Classification of Diseases, 10th Revision (ICD-10) G10 or F02.2; no HD code in the prior 9 years) were each matched to five controls on sex, age and deprivation. Recurrent events were modelled from 9 years before to 7 years after the first HD record. Results: Among 2659 cases and 13 295 controls, divergence preceded the first record by 6 to 8 years. Antipsychotic use rose earliest (8 years prior, HR 1.54, 95% CI 1.31 to 1.80). From 6 years prior, neurology (HR 1.53, 95% CI 1.06 to 2.22), psychiatry (HR 1.25, 95% CI 1.04 to 1.47) and speech therapy (HR 2.16, 95% CI 1.46 to 3.19) diverged. Before the record, neurology consultations occurred in 50.8% of cases versus 10.0% of controls, psychiatry consultations in 33.9% vs 10.0% and speech therapy in 8.5% vs 0.6%. After the record, divergence widened: neurology peaked at 3 years (HR 5.44, 95% CI 3.94 to 7.54) and antipsychotic use at 5 years (HR 3.63, 95% CI 3.06 to 4.30), while physiotherapy emerged only afterwards (4 years, HR 3.10, 95% CI 2.89 to 3.33). Conclusions: HD generates substantial care years before diagnostic coding. Neuropsychiatric and communicative demand precedes motor-related rehabilitative care by several years, defining a measurable window for earlier referral.
SN - 0022-3050
SN - 1468-330X
ER -