Stigma assessment scale for adolescent idiopathic scoliosis: A new tool for spine deformity stigma evaluation

Stigma is the negative attitudes towards an illness or difference. The literature lacks detailed scales specifically addressing stigmatization in AIS. This study aimed to develop Adolescent Idiopathic Scoliosis Stigma Assessment Scale (AIS-SAS) to measure stigmatization in AIS patients.

In creating the AIS-SAS, we developed items via literature review and expert input, confirmed content validity, and conducted a field test for construct validity and reliability. Our experts designed 38 items in three subscales: Scoliosis, Brace, and Surgery-related stigma. Exploratory factor analysis (EFA) and convergent validity were examined for construct validity. The convergent validity of AIS-SAS was assessed through its correlations with the Rosenberg Self-Esteem Scale (RSES), SRS-22, and Spinal Appearance Questionnaire (SAQ). Reliability was gauged via internal consistency and test-retest methods.

Sixty-seven adolescents with AIS were included in the study. EFA results confirmed one-dimensionality for each subscale, with factor loadings from 0.51 to 0.96, leading to the removal of 8 items with loadings below 0.3 from the AIS-SAS. The final AIS-SAS has three subscales: scoliosis (18 items), brace (5 items), and surgery-related stigma (7 items). Regarding convergent validity, the scoliosis-related stigma scores significantly correlated with SRS-22 self-image (r= -0.413 p = 0.001) and SAQ-Appearance (r = 0.441 p = 0.002). The RSES-Total score shows a negative correlation with Scoliosis, Brace, and Surgery-related stigma scores: -0.500 (p < 0.001), -0.435 (p = 0.049), and  -0.498 (p = 0.042), respectively. AIS-SAS subscales showed good reliability (Cronbach-α > 0.8 ICC > 0.8).

AIS-SAS is the first valid and reliable high-quality scale assessing stigmatization from AIS, measuring scoliosis, brace, and surgery-related stigma via three subscales.