Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage

ABSTRACT Objective Increasing evidence shows that patients with intracerebral hemorrhage (ICH) can achieve better‐than‐expected outcomes with aggressive therapy. However, real‐world long‐term data, patient‐centered outcomes, and societal measures after maximal ICH treatment are lacking. This study a...

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Main Authors: Anne Mrochen, Maximilian I. Sprügel, Alexander Sekita, Stefanie Balk, David Haupenthal, Stefan T. Gerner, Hannes Lücking, Arnd Doerfler, Kosmas Macha, Stefan Schwab, Joji B. Kuramatsu, Jochen A. Sembill
Format: Article
Language:English
Published: Wiley 2025-06-01
Series:Annals of Clinical and Translational Neurology
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Online Access:https://doi.org/10.1002/acn3.70048
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author Anne Mrochen
Maximilian I. Sprügel
Alexander Sekita
Stefanie Balk
David Haupenthal
Stefan T. Gerner
Hannes Lücking
Arnd Doerfler
Kosmas Macha
Stefan Schwab
Joji B. Kuramatsu
Jochen A. Sembill
author_facet Anne Mrochen
Maximilian I. Sprügel
Alexander Sekita
Stefanie Balk
David Haupenthal
Stefan T. Gerner
Hannes Lücking
Arnd Doerfler
Kosmas Macha
Stefan Schwab
Joji B. Kuramatsu
Jochen A. Sembill
author_sort Anne Mrochen
collection DOAJ
description ABSTRACT Objective Increasing evidence shows that patients with intracerebral hemorrhage (ICH) can achieve better‐than‐expected outcomes with aggressive therapy. However, real‐world long‐term data, patient‐centered outcomes, and societal measures after maximal ICH treatment are lacking. This study aimed to analyze 5‐year survival, utility‐weighted functional outcomes, and burden of disease in maximally treated ICH patients, stratified by max‐ICH Score. Methods This study investigated consecutive patients with spontaneous ICH included in the single‐center Longitudinal Cohort Study on ICH Care (UKER‐ICH, NCT03183167, 2006–2015). We included all patients without early care limitations, hereinafter referred to as maximally treated. We analyzed the stratification by max‐ICH Score of cumulative 5‐year survival using Kaplan–Meier estimates and COX regression modeling, disease burden using disability‐adjusted life years (DALYs), and patient‐centered outcome at 12 months using the Utility‐Weighted modified Rankin Scale (UW‐mRS). Results The 5‐year survival rate of the included 1022 maximally treated patients was 53%, stratified by max‐ICH Score (0 points: 85%, 1: 91%, 2: 69%, 3: 59%, 4: 47%, 5: 32%, 6: 29%, 7: 18%, ≥ 8: 0%, log‐rank p < 0.001). The mean number of DALYs was 8.94 (±8.15, standard deviation [SD]), consisting of 4.27 years of life lost (±7.79, SD) and 4.67 years lived with disability (±6.38, SD). Patients with a max‐ICH Score of 5 had the highest burden of disease (12.76 [±9.43, SD]). The mean UW‐mRS at 12 months was 0.45 (±0.37, SD) and decreased with increasing max‐ICH Score (0: 0.80 [±0.23], 1: 0.73 [±0.29], 2: 0.67 [±0.29], 3: 0.50 [±0.34], 4: 0.39 [±0.34], 5: 0.25 [±0.30], 6: 0.19 [±0.28], 7: 0.16 [±0.26], ≥ 8: 0.08 [±0.22], p < 0.001). Interpretation These observational data, stratified by max‐ICH Score, provide patients and treating physicians with an initial severity assessment in terms of potential long‐term patient‐centered outcomes and burden of disease following maximal treatment.
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spelling doaj-art-e57112490e4b40c4aec2f1f09a0cad1c2025-08-20T02:07:09ZengWileyAnnals of Clinical and Translational Neurology2328-95032025-06-011261144115010.1002/acn3.70048Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral HemorrhageAnne Mrochen0Maximilian I. Sprügel1Alexander Sekita2Stefanie Balk3David Haupenthal4Stefan T. Gerner5Hannes Lücking6Arnd Doerfler7Kosmas Macha8Stefan Schwab9Joji B. Kuramatsu10Jochen A. Sembill11Department of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neuroradiology University Hospital Erlangen Erlangen GermanyDepartment of Neuroradiology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyDepartment of Neurology University Hospital Erlangen Erlangen GermanyABSTRACT Objective Increasing evidence shows that patients with intracerebral hemorrhage (ICH) can achieve better‐than‐expected outcomes with aggressive therapy. However, real‐world long‐term data, patient‐centered outcomes, and societal measures after maximal ICH treatment are lacking. This study aimed to analyze 5‐year survival, utility‐weighted functional outcomes, and burden of disease in maximally treated ICH patients, stratified by max‐ICH Score. Methods This study investigated consecutive patients with spontaneous ICH included in the single‐center Longitudinal Cohort Study on ICH Care (UKER‐ICH, NCT03183167, 2006–2015). We included all patients without early care limitations, hereinafter referred to as maximally treated. We analyzed the stratification by max‐ICH Score of cumulative 5‐year survival using Kaplan–Meier estimates and COX regression modeling, disease burden using disability‐adjusted life years (DALYs), and patient‐centered outcome at 12 months using the Utility‐Weighted modified Rankin Scale (UW‐mRS). Results The 5‐year survival rate of the included 1022 maximally treated patients was 53%, stratified by max‐ICH Score (0 points: 85%, 1: 91%, 2: 69%, 3: 59%, 4: 47%, 5: 32%, 6: 29%, 7: 18%, ≥ 8: 0%, log‐rank p < 0.001). The mean number of DALYs was 8.94 (±8.15, standard deviation [SD]), consisting of 4.27 years of life lost (±7.79, SD) and 4.67 years lived with disability (±6.38, SD). Patients with a max‐ICH Score of 5 had the highest burden of disease (12.76 [±9.43, SD]). The mean UW‐mRS at 12 months was 0.45 (±0.37, SD) and decreased with increasing max‐ICH Score (0: 0.80 [±0.23], 1: 0.73 [±0.29], 2: 0.67 [±0.29], 3: 0.50 [±0.34], 4: 0.39 [±0.34], 5: 0.25 [±0.30], 6: 0.19 [±0.28], 7: 0.16 [±0.26], ≥ 8: 0.08 [±0.22], p < 0.001). Interpretation These observational data, stratified by max‐ICH Score, provide patients and treating physicians with an initial severity assessment in terms of potential long‐term patient‐centered outcomes and burden of disease following maximal treatment.https://doi.org/10.1002/acn3.70048intracerebral hemorrhage prognosispatient‐centered outcomesstroke disability burden
spellingShingle Anne Mrochen
Maximilian I. Sprügel
Alexander Sekita
Stefanie Balk
David Haupenthal
Stefan T. Gerner
Hannes Lücking
Arnd Doerfler
Kosmas Macha
Stefan Schwab
Joji B. Kuramatsu
Jochen A. Sembill
Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
Annals of Clinical and Translational Neurology
intracerebral hemorrhage prognosis
patient‐centered outcomes
stroke disability burden
title Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
title_full Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
title_fullStr Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
title_full_unstemmed Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
title_short Long‐Term Survival, Burden of Disease, and Patient‐Centered Outcomes in Maximally Treated Intracerebral Hemorrhage
title_sort long term survival burden of disease and patient centered outcomes in maximally treated intracerebral hemorrhage
topic intracerebral hemorrhage prognosis
patient‐centered outcomes
stroke disability burden
url https://doi.org/10.1002/acn3.70048
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