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 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.

Keywords: intracerebral hemorrhage prognosis; patient‐centered outcomes; stroke disability burden.

FIGURE 1

Kaplan–Meier survival curves after maximal treatment stratified by the max‐ICH Score. Kaplan–Meier survival curves illustrate the survival probabilities over a 5‐year period. The curves are segmented according to max‐ICH Scores, highlighting differences in survival outcomes based on the severity of the initial ICH. The “Number at Risk Table” provides the count of patients at the beginning of each annual interval for each max‐ICH Score group.

FIGURE 2

Hazard of mortality after maximal treatment stratified by the max‐ICH Score. Cox proportional hazards regression analysis was conducted to assess the relative hazard of death, with 95% confidence intervals (CI), associated with each max‐ICH Score. The reference group for this analysis was the group with a max‐ICH Score of 0. The results illustrate the relationship between increasing max‐ICH Scores and the hazard of death. Abbreviations: CI, confidence interval; ICH, intracerebral hemorrhage.

FIGURE 3

The burden of disease after maximal treatment stratified by the max‐ICH Score. The number and subdivision of disability‐adjusted life years (DALYs) were analyzed for each max‐ICH Score. The red bar represents the total DALYs, which are composed of years lived with disability (YLD, light gray bar) and years of life lost (YLL, dark gray bar). To assist in the interpretation of the combined analysis of morbidity and mortality, the average age (in years) of the patients with individual max‐ICH Scores is also provided.

FIGURE 4

Patient‐centered functional long‐term outcome after maximal treatment stratified by the max‐ICH Score. The patient‐centered functional outcome 12 months after maximal treatment was analyzed using the utility‐weighted mRS. Results are presented separately for each max‐ICH Score, indicating the mean UW‐mRS and standard deviation (SD). Abbreviations: ICH, intracerebral hemorrhage; mRS, modified Rankin Scale.