Abstract 3148: Self Reported Quality of Life After Intracerebral Hemorrhage: Is a Modified Rankin Scale Score of 4 Worth it?

Background: Intracerebral hemorrhage (ICH) trials often define poor outcome as a modified Rankin Scale Score (mRS) ≥4. While mRS score thresholds are important for demonstrating treatment effect, they do no tell physicians if a treatment outcome is “worth it.” Little self-reported quality of life (QOL) data exists to guide physicians, so opinions during academic discussions and/or family meetings may be driven by personal bias. We sought to describe both self and surrogate reported QOL in ICH survivors in relation to mRS score. Methods: Consecutive ICH patient were prospectively enrolled in the NIH-funded DiAgnostic Utility of MRI in Spontaneous Intracerebral Hemorrhage (DASH) study. Survivors were followed up at 3 months in clinic and at 12 months by telephone. At each time point, patients or surrogates were asked to rate the patient’s QOL as: excellent, good, fair, or poor. mRS scores were determined by an investigator through a semi-structured interview. Results: Self reported QOL was available in 95 patients with 143 QOL ratings, and surrogate reported QOL in 66 patients with 84 QOL ratings. Of self-reporters with a mRS of 4, 29% reported at least a good QOL, and 93% rated at least a fair QOL (Figure 1). Of self-reporters with a mRS of 3, 58% reported at least a good QOL, and 97% rated at least a fair QOL. Patients with a mRS of 4 were less likely to report a poor QOL than surrogate raters (χ 2 =3.9, p=0.05, Figure 2). In all patients, both self-reported and surrogate reported QOL were only loosely associated with mRS (R 2 =0.25 and R 2 =0.12, respectively). Forty-eight patients had self-reported QOL at 3 and 12 months. In these patients mRS improved in 16 (33%) patients without an associated improvement in QOL. Seven patients (15%) reported an improvement in QOL, but only 3 had an improvement in their mRS between 3 and 12 months. In 3 (6%) patients, the mRS worsened while QOL remained unchanged. No change in mRS was seen in 8 (17%) patients who reported worse QOL at 12 than at 3 months. Conclusions: Self reported QOL is only loosely correlated with mRS for the individual patient. Patient surrogates are more prone to rate QOL of patients with a mRS of 4 as poor than patients themselves. These data are clinically relevant as mRS alone may not capture the satisfaction of the individual patient with their outcome.