Follow-up quality of life assessment in patients after head and neck surgery as evaluated by lay caregivers.

OBJECTIVE/HYPOTHESIS: As rehabilitation after head and neck surgery is increasingly dependent upon caregivers with no formal training (lay caregivers), the lay caregiver's assessment of the patient's quality of life (QOL) status may be critical to successful rehabilitative efforts. This study evaluates lay caregiver QOL assessment at six and 12 months post-operatively and compares the findings to pre-operative assessments. MATERIALS AND METHODS: Twenty-five patients undergoing head and neck surgery and their primary lay caregivers completed the Medical Outcomes Survey Short Form 36 (SF-36) pre-operatively and were followed. Six and 12-month post-operative forms were completed and compared for available patient/lay caregiver pairs. Pair assessment was considered congruent if the lay caregiver's assessment of each domain of the SF-36 fell within the 90th % confidence interval of the patient's score. High congruence was defined as congruence between the pairs for six or more of the eight domains. Results were also related to previously published preoperative data. RESULTS: Fourteen and six patient/lay caregiver pairs completed the six and 12-month follow-up forms, respectively. Overall congruence was 55% and 45% at six and 12 months, respectively, down from 70% found pre-operatively. Forty-two percent and 17% of the patient/lay caregiver pairs were highly congruent at six and 12 months, respectively. Both values were below the 60% high congruence value noted pre-operatively. The trend toward lay caregivers underrating general health was maintained, while overrating of bodily pain leveled at six months and returned at 12 months. Same generation pairs demonstrated a steady decrease in high congruence levels at six and 12 months. Recurrent disease status no longer predicted high congruence at six or 12 months. CONCLUSION: Trends predicting high congruence in patient/lay caregiver QOL assessment identified preoperatively were not maintained in the post-operative evaluations, except the underrating of patients' general health status. Lay caregiver ability to accurately assess patient QOL status did not improve and, in fact, appeared to worsen. Further study into lay caregiver assessment of patients' quality of life status following head and neck surgery is warranted. Efforts should be directed toward the use of standardized assessment tools and anticipation of subject dropout with greater subject recruitment.