Late presentation in adolescent idiopathic scoliosis: who, why, and how often?

Children and young teenagers with adolescent idiopathic scoliosis (AIS) not infrequently present with Cobb angles in excess of 40° at the first clinic visit. This study aimed to establish the incidence of this group of patients, identify the possible factors that may account for the late presentation, and make appropriate recommendations where applicable. This is an institutional review board-approved study. The index posteroanterior spinal radiographs of all 1176 AIS patients who presented to our institution between January 2007 and December 2011 were independently reviewed by two authors (J.Z.J.L. and K.B.L.L.). Patients with curves 40° or greater were included. An interviewer-administered survey was conducted by phone interview to obtain demographic information and identify possible factors for late presentation. The incidence of late presenters was found to be 5.5% (65/1176). The response rate was 73.8% (48/65). Twenty-four (50.0%) respondents acknowledged delaying seeking help after initial suspicion of scoliosis. The reasons cited most were that they were 'too busy' and 'did not know it was scoliosis'. Thirteen (27.1%) respondents attempted 'alternative' treatment before their first specialist appointment, of which 'Chinese Sinseh massage' was the most popular. Thirty-two (66.7%) respondents were not aware of AIS before their diagnosis. In conclusion, the incidence of late presentation in AIS is 5.5% in this series and significantly higher than the published figure of 0.1%. A time delay in seeking help because of a poor understanding of the condition and the failure to appreciate the importance of early specialist review may have contributed toward this relatively high incidence. Patient education and emphasis on timely specialist review can enhance and complement school screening to reduce the incidence of late presentation.