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Predictors of Care Home Admission and Survival Rate in Patients With Syndromes Associated With Frontotemporal Lobar
Barbara Borroni1, Barbara Tarantino1, Caroline Graff1
1From the Department of Clinical and Experimental Sciences (B.B.), University of Brescia; Department of Continuity of Care and Frailty (B.B., A.C.A.), ASST Spedali Civili, Brescia; Medical and Genomic Statistics Unit (B.T., M.G.), Department of Brain and Behavioural Sciences, University of Pavia, Italy; Division of Neurogeriatrics (C.G.), Department NVS, Karolinska Institutet, Solna; Unit for Hereditary Dementia (C.G.), Theme Inflammation and Aging, Karolinska University Hospital-Solna, Stockholm, Sweden; Research Unit of Clinical Medicine (J.K., S.A.-S., A.M.P.), Neurology, University of Oulu; MRC (J.K., A.M.P.), Oulu University Hospital; Neurocenter (J.K.), Neurology, Oulu University Hospital, Finland; Department of Neurology (A.C.L., M.O.), University of Ulm; Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE) (A.C.L.), Ulm, Germany; Cognitive Disorders Unit (F.M., M.B., A.G.), Department of Neurology, Hospital Universitario Donostia; Neuroscience Area (F.M., M.B., A.G.), Biogipuzkoa Health Research Institute, San Sebastian, Spain; Department of Neurology (M.O.), Martin Luther University, University Hospital, Halle (Saale), Germany; MRC Cognition and Brain Sciences Unit (J.B.R., A.G.M., T.R.), Department of Clinical Neurosciences, and Cambridge University Hospitals NHS Trust, University of Cambridge, Cambridge, United Kingdom; Department of Neurology and Alzheimer Center Erasmus MC (H.S., E.V.D.E., J.C.V.S.), Erasmus MC University Medical Center, Rotterdam, the Netherlands; Neurology (E. Solje, P.H.), Institute of Clinical Medicine, University of Eastern Finland; Neurocenter (E. Solje), Neurology, Kuopio University Hospital, Finland; Neurology Clinic (E. Stefanova, G.M.S.), Faculty of Medicine, University Clinical Center, University of Belgrade; UH Alexandrovska (L.D.T., S.M.), Department of Neurology, Medical University Sofia, Bulgaria; Theme Inflammation and Aging (V.J.), Medical Unit Aging Brain, Karolinska University Hospital Huddinge, Solna; Division of Clinical Geriatrics (V.J.), Department NVS, Karolinska Institutet, Huddinge, Sweden; Molecular Markers Laboratory (R.G.), IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia; and Center for Neurodegenerative Diseases and the Aging Brain (M.T.D., C.Z., G.L.), Pia Fondazione Cardinale Giovanni Panico, University of Bari-Aldo Moro, Italy.
Background And Objectives:
Data on care home admission and survival rates of patients with syndromes associated with frontotemporal lobar degeneration (FTLD) are limited. However, their estimation is essential to plan trials and assess the efficacy of intervention. Population-based registers provide unique samples for this estimate. The aim of this study was to assess care home admission rate, survival rate, and their predictors in incident patients with FTLD-associated syndromes from the European FRONTIERS register-based study.
Methods:
We conducted a prospective longitudinal multinational observational registry study, considering incident patients with FTLD-associated syndromes diagnosed between June 1, 2018, and May 31, 2019, and followed for up to 5 years till May 31, 2023. We enrolled patients fulfilling diagnosis of the behavioral variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), progressive supranuclear palsy (PSP) or corticobasal syndrome (CBS), and FTD with motor neuron disease (FTD-MND). Kaplan-Meier analysis and Cox multivariable regression models were used to assess care home admission and survival rates. The survival probability score (SPS) was computed based on independent predictors of survivorship.
Results:
A total of 266 incident patients with FTLD were included (mean age ± SD = 66.7 ± 9.0; female = 41.4%). The median care home admission rate was 97 months (95% CIs 86-98) from disease onset and 57 months (95% CIs 56-58) from diagnosis. The median survival was 90 months (95% CIs 77-97) from disease onset and 49 months (95% CIs 44-58) from diagnosis. Survival from diagnosis was shorter in FTD-MND (hazard ratio [HR] 4.59, 95% CIs 2.49-8.76, p < 0.001) and PSP/CBS (HR 1.56, 95% CIs 1.01-2.42, p = 0.044) compared with bvFTD; no differences between PPA and bvFTD were found. The SPS proved high accuracy in predicting 1-year survival probability (area under the receiver operating characteristic curve = 0.789, 95% CIs 0.69-0.87), when defined by age, European area of residency, extrapyramidal symptoms, and MND at diagnosis.
Discussion:
In FTLD-associated syndromes, survival rates differ according to clinical features and geography. The SPS was able to predict prognosis at individual patient level with an accuracy of ∼80% and may help to improve patient stratification in clinical trials. Future confirmatory studies considering different populations are needed.
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