Disease-Specific Outcome Measures Evaluating the Health-Related Quality of Life of Children and Adolescents with Idiopathic Scoliosis and Scheuermann's Kyphosis: A Literature Review

Adolescent idiopathic scoliosis (AIS) and Scheuermann's kyphosis (SK) are the most common types of spinal deformities in adolescents, and both have substantial ramifications on health-related quality of life (HRQoL) parameters. Various questionnaires have been developed to assess HRQoL in age-group populations with spinal deformity. Nevertheless, there remains a lack of consensus across the literature as to which instrument is the most suitable for evaluating the HRQoL of this cohort. Thus, this literature review was conducted to present disease-specific questionnaires for children and adolescents with AIS and SK to provide their psychometric characteristics (validity, reliability, and responsiveness) across different languages. A literature search was performed in the Medline (PubMed), Scopus, EMBASE, and Google Scholar databases. Studies that outlined the development and application of questionnaires evaluating HRQoL of children and adolescents with spinal deformity were included, and data on their validity and reliability in different translated languages were collected. A total of 10 disease-specific questionnaires were identified. Except for one questionnaire that was a proxy-reported measure, the other questionnaires were self-reported. We determined that selecting the proper questionnaire for clinical and research purposes requires careful consideration of various factors including the type of treatment intervention planned as well as various patient demographic factors. For children with early-onset scoliosis, the ideal questionnaire to evaluate their HRQoL is the Early-Onset Scoliosis Questionnaire-24. For adolescents with AIS and SK who are potential candidates for surgical intervention, the use of Scoliosis Research Society-22, Scoliosis Japanese-27, and Quality of Life Profile Spinal Deformity questionnaires is appropriate. For patients who are under nonsurgical treatment, the Brace Questionnaire and Italian Spine Youth Quality of Life questionnaires can be utilized. Nonetheless, when the specific intent of a study is to evaluate the self-image perception of patients, the use of drawing-based questionnaires may be the optimal choice.