Differing perspectives on outcome after subarachnoid hemorrhage: The patient, the relative, the neurosurgeon

OBJECTIVE: To better understand patients' and relatives' views of outcome a fter surgery for subarachnoid hemorrhage (SAH), we evaluated neurobehaviora l changes, psychological distress, and family burden of patients who had be en considered by their neurosurgeon as having a "good recovery" or a "moder ate disability," as rated on the Glasgow Outcome Scale. METHODS: A heterogeneous sample of 28 patients treated surgically for SAH f rom an aneurysm or an arteriovenous malformation and their relatives separa tely underwent a semistructured interview. They also completed a revised ve rsion of the Adjective Checklist to assess their perceptions of the patient 's neurobehavioral changes and the Brief Symptom Inventory as a measure of their own psychological distress. Levels of family burden on the relatives were evaluated with a Likert strain scale and the Zarit Burden Interview. RESULTS: Approximately 19 months after surgery for SAH, the majority of the patients reported significant negative neurobehavioral changes and negativ e changes in employment, energy levels, tolerance to mild stressors, leisur e activities, and social and sexual relationships. Patients and relatives b oth reported elevated levels of psychological distress, and the relatives r eported elevated levels of family burden. Patients' acid relatives' percept ions differed, with the relatives reporting more problems; both viewed the patient's outcome more negatively than did the operating neurosurgeon. CONCLUSION: Despite the neurosurgeon's classification of patients as having a "good recovery" or "moderate disability," the majority of patients surgi cally treated for SAH reported psychosocial and neurobehavioral changes tha t were disabling for them and burdensome to their family. Patients and rela tives who are interviewed separately by an experienced clinician may provid e differing perspectives on SAH outcome that are not necessarily good.