Patient, caregiver, and surgeon perceptions of quality of life following anterior skull base surgery

Objective: To estimate the agreement between surgeons' and lay caregivers' quality-of-life (QOL) perceptions of patients undergoing major skull base surgery. Design: Cohort survey of patients who had undergone anterior skull base tumor excision. Setting: University-affiliated medical center. Participants: Thirty-five patients and their lay caregivers participated in the study. Main Outcome Measures: A triple survey was performed: each patient and his or her caregiver were asked to answer 35 questions related to 6 distinct QOL domains: role of performance, physical function, vitality, pain, specific symptoms, and effect on emotions. The composite health-related QOL of the patients was also rated on an ordinal scale by 3 surgeons who participated in the operation and follow-up. Results: An overall significant agreement was found between patients' and caregivers' scores at the group level (mean scores of each domain) and individual level (patient-caregiver pairs) (r = 0.76, P α .001). There was a minor correlation in the effect on emotions domain and no correlation in the pain domain. We found no correlation between the surgeons' and patients' ratings. The operating surgeons tended to overate their patients' QOL. Conclusions: The study results show that the surgeon's perception of his or her patient's QOL is not sufficiently accurate to correctly estimate patients' QOL status. These judgments should come from the patient or from the caregiver, whose perception can be used in clinical trials as a proxy for estimation of a patient's QOL.