Purpose: Long-term cosmesis from the patient's perspective is compared to the doctor's appraisal. Factors that determine judgment of cosmesis are analyzed. Also, a patient questionnaire was designed to screen for normal tissue reactions and is evaluated.
Methods and patients: With structured questions, patients rated their satisfaction considering cosmesis, the difference in overall appearance, and specific changes of the breast. Two doctors rated cosmesis and radiation late effects (LENT/SOMA). Ratings were compared, and the relative impact of single items was studied. Two hundred eighty-seven patients with unilateral breast carcinoma were examined after a median follow-up of 8 years. They were treated between 1981 and 1995 with lumpectomy and radiotherapy of the breast with 1.8-2.5 Gy fractions with a median total dose of 55 Gy (range: 50-65 Gy).
Results: One hundred sixty-one patients rated cosmesis as satisfying, 73 patients rated it as acceptable, and 25 patients as poor. Eighty-nine patients noted severe changes of appearance. Severe firmness and extensive scars were the most frequent complaint; the most important single item for judging cosmesis as poor was highly visible scars. Generally, doctors rated cosmesis less favorably (satisfactory, 150 patients; poor, 43 patients). Severe fibrosis was more important than discoloration of the breast or scars. Correlation between patients' and doctors' rating of cosmesis was modest (Cohen's weighted kappa 0.29), whereas the doctor's rating correlated well (0.55). Specificity and sensitivity of the questionnaire item for severe fibrosis (using doctors' judgments as gold standard) was 0.8; Cohen's weighted kappa was 0.34 (95% confidence interval: 0.21-0.48).
Conclusion: Rating of cosmesis is subjective. Patients' satisfaction with cosmesis is greater than the doctors' and is determined not only by radiation late effects, but also by factors unrelated to the appearance of the breast. Severe fibrosis may be detected by a patient questionnaire.