It is all about perspectives—poor agreement between the patient, their parent and their physician in perception of spinal appearance in adolescent idiopathic scoliosis

Purpose: Adolescent idiopathic scoliosis (AIS) affects the appearance of the trunk and spine. The Spinal Appearance Questionnaire (SAQ) measures the AIS patients’ perception of appearance, but may be challenging for patients, because parts of the trunk changes are not visible to themselves (e.g. posterior rib hump). Perceptions may therefore differ between patients, parents and physicians. The study aim is to investigate whether perceptions of physicians and parents align with the patient’s perception of their appearance, as measured with the SAQ. Methods: The SAQ (Dutch) was administered to 108 AIS patients (15.3 years [SD 2.2], 77.8% girls), their parent and physician (n = 15). Parents completed it twice, based on their own perception (parent’s perspective) and their conceived child’s perception (parent-patient’s perspective). For all four perspectives, the 10 individual items and total appearance domain scores were compared. Results: The appearance domain scores differed not between the four perspectives (p = 0.248) and the ICCs compared with the patient’s own scores were 0.63 (95%CI 0.47–0.75) for the parent’s perspective, 0.60 (95%CI 0.45–0.71) for the parent-patient’s perspective and 0.44 (95%CI 0.27–0.58) for the physician’s perspective. The ICC per item varied from − 0.01 to 0.64. Conclusion: For the appearance domain score, moderate agreement was found between the patient’s, and their parent’s and parent-patient’s perspectives. Poor agreement was found between the patient’s and physician’s perspectives. For the 10 items, poor to moderate agreement was found between the patient and their parents or physicians. During scoliosis treatment, physicians should be aware of differences in perceptions of appearance of patients, parents and themselves.