Patients' and Parents' Perceptions of Post-operative Appearance in Adolescent Idiopathic Scoliosis (AIS)

Summary: AIS patients rate their post-operative cosmesis differently than their parents. Only fair to moderate agreement was found when comparing ratings of the shoulders, shoulder blades, waist and overall appearance. In addition, patients rated their waist and overall appearance significantly worse than their parents. Pre-operative education with the family should include an explicit discussion of patients' perceptions of cosmetic deformity.

Purpose: To determine the agreement between patients' and parents' perceptions of the patient's postoperative appearance.

Methods: At two years post-operatively, 128 patients and parents independently rated the physical deformity of the patient's shoulder blades, shoulders, waist and overall appearance of the back [0 (best) to 5 (worst)].

Summary of Results: Fair to moderate agreement was found between patient and parent ratings of the patient's shoulder blades (kappa = 0.39, 95% C.I., 0.29-0.48), shoulders (kappa = 0.38, 95% C.I., 0.26-0.50), waist (kappa = 0.45, 95% C.I., 0.25-0.55). Overall appearance however, had the lowest agreement (kappa = 0.22, 95% C.I., 0.04-0.40). Patients rated the appearance of their waist (p = 0.013) and overall appearance (p = 0.039) significantly worse than their parents.

Conclusion: Patients and parents do not strongly agree on the cosmetic outcome of AIS surgery. Patients perceive some outcomes more negatively than their parents.

Significance: Adolescents need to play a major role in the surgical decision making process and probably the primary role in evaluating the cosmetic outcomes of surgery.

Discussion: Cosmesis is a major aspect in surgical decision making and improved appearance is an expectation of families. The results of this study would suggest that parents and adolescents only moderately agree about cosmetic appearance. When parents and patients disagree, surgeons should probably defer to concerns of the patient rather than the parents.