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Background: The 24-question Early-Onset Scoliosis Questionnaire (EOSQ-24) is a proxy measure assessing health-related quality of life (HRQoL) among patients with early-onset scoliosis (EOS). There exists an increasing need to assess HRQoL through a child's own perspective, particularly for older children and adolescents with EOS. The purpose of this study was to develop and validate a self-reported questionnaire, the Early-Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF), to assess HRQoL in older children and adolescents with EOS., Methods: A literature review, an expert focus group, and patient interviews were used to generate a preliminary survey of appropriate domains and question items. This survey was provided to English-speaking patients with EOS who were 8 to 18 years of age and capable of answering survey questions. Content validity was assessed for clarity and relevance of questions. Confirmatory factors analysis was performed to reduce the number of items and determine domains that fit items. Reliability was evaluated by measuring the internal consistency of items and test-retest reliability. Construct validity was evaluated by convergent, discriminant, and known-group validity., Results: The literature review, expert focus group, and patient interviews identified 59 questions in 14 domains. Psychometric analysis reduced these to 30 questions across 12 domains: General Health, Pain/Discomfort, Pulmonary Function, Transfer, Physical Function/Daily Living, Participation, Fatigue/Energy Level, Sleep, Appearance, Relationships, Emotion, and Satisfaction. The final questionnaire was found to have good content and construct validity and adequate reliability., Conclusions: The EOSQ-SELF is a valid and reliable instrument for measuring self-reported HRQoL among older children and adolescents with EOS (ages 8 to 18 years). This will serve as an important research outcome measure and enhance clinical care by providing a better understanding of HRQoL for these patients., Level of Evidence: Diagnostic Level II . See Instructions for Authors for a complete description of levels of evidence., Competing Interests: Disclosure: The Disclosure of Potential Conflicts of Interest forms are provided with the online version of the article ( http://links.lww.com/JBJS/H106 )., (Copyright © 2022 by The Journal of Bone and Joint Surgery, Incorporated.)

Background: The Classification of Early-Onset Scoliosis (C-EOS) allows providers to differentiate patients, for clinical and research purposes, on the basis of the etiology of their disease as well as radiographic parameters. The Early Onset Scoliosis Questionnaire (EOSQ) is the first disease-specific, parent-reported HRQOL (health-related quality-of-life) outcome measure for this condition. We sought to determine the influence of the C-EOS etiology designation, radiographic parameters, and medical comorbidities on EOSQ scores to differentiate quality of life in this heterogeneous patient population. We hypothesized that baseline EOSQ scores for patients with EOS would be strongly affected by the C-EOS etiology designation., Methods: The analysis included prospectively enrolled patients with EOSQ scores recorded in a multicenter EOS database prior to intervention for the EOS. EOSQ scores were compared across C-EOS etiologies, severity of disease based on radiographic measurements, and patient comorbidities prior to scoliosis intervention., Results: Six hundred and ten patients with EOS were available for analysis; 119 had congenital, 201 had idiopathic, 156 had neuromuscular, and 134 had syndromic EOS. In multivariate analysis, neuromuscular and syndromic etiologies were associated with lower scores than congenital and idiopathic etiologies in many EOSQ domains including general health, transfer, daily living, fatigue/energy level, and emotion. Patients with neuromuscular EOS had the lowest EOSQ scores in general. Congenital and idiopathic EOS did not differ from each other in any EOSQ domain. Coronal Cobb and kyphosis angles had significant inverse but generally weak correlations with EOSQ domains. Individual medical comorbidities had a minor effect on certain domains while American Society of Anesthesiologists (ASA) class and total number of comorbidities had inverse correlations with most domains., Conclusions: The underlying etiology of EOS appears to have a significant influence on the parent-reported HRQOL outcomes of the disease. Specifically, syndromic and neuromuscular C-EOS diagnoses are associated with lower EOSQ scores before treatment compared with congenital and idiopathic diagnoses. Radiographic measurements of severity have a relatively small influence on EOSQ scores. These baseline differences in C-EOS-designated etiology should be accounted for in studies comparing outcomes of treatment for this heterogeneous patient population., Level of Evidence: Prognostic Level II. See Instructions for Authors for a complete description of levels of evidence., Competing Interests: Disclosure: This project was supported by the Angela S. M. Kuo award through the Pediatric Orthopaedic Society of North America. Funding was directed to the PSSG. On the Disclosure of Potential Conflicts of Interest forms, which are provided with the online version of the article, one or more of the authors checked “yes” to indicate that the author had a relevant financial relationship in the biomedical arena outside the submitted work; “yes” to indicate that the author had a patent and/or copyright, planned, pending, or issued, broadly relevant to this work; and “yes” to indicate that the author had other relationships or activities that could be perceived to influence, or have the potential to influence, what was written in this work (http://links.lww.com/JBJS/G291)., (Copyright © 2021 by The Journal of Bone and Joint Surgery, Incorporated.)

Background: Posterior spinal fusion with pedicle screws is the gold-standard treatment for adolescent idiopathic scoliosis (AIS); however, it is unclear whether this procedure results in improved long-term back pain and health-related quality of life compared with patients not surgically treated for AIS. The aim of the present study was to evaluate back pain and quality of life in surgically managed patients with a minimum follow-up of 5 years compared with patients with untreated AIS and a healthy control group., Methods: Fifty-five consecutive adolescent patients who underwent posterior pedicle screw instrumentation for AIS by a single orthopaedic surgeon were prospectively enrolled. At a minimum of 5 years postoperatively, 49 patients completed Scoliosis Research Society (SRS)-24 questionnaires, and data on reoperation were collected. Pain and quality-of-life parameters were compared with those of 49 age and sex-matched patients with untreated AIS and 49 healthy controls., Results: The major curve averaged 53° preoperatively and 12° at 2 years postoperatively. One reoperation (pedicle screw removal) was needed because of a new neurological deficit (transient). The SRS-24 pain, function, and total scores improved significantly from preoperatively to 5 years postoperatively (all p ≤ 0.016), with pain scores improving from 4.0 to 4.3 (p = 0.003). There was no association between pain scores and the preoperative major curve, instrumentation below L1, or postoperative rib hump. The surgical treatment group had significantly better pain, activity, and self-image domain scores at 5 years postoperatively compared with the untreated AIS group (all p ≤ 0.014), and similar pain, self-image, and activity domain scores compared with the healthy control group; however, function scores were significantly lower among patients in the surgical treatment group (p < 0.001)., Conclusions: Patients who underwent posterior spinal fusion with pedicle screws experienced improved back pain and health-related quality of life compared with patients with untreated AIS. Patients in the surgical treatment group had similar health-related quality of life to that of the healthy control group, except for function, which was significantly lower., Level of Evidence: Therapeutic Level III. See Instructions for Authors for a complete description of levels of evidence.

Background: Health-related quality of life in adults with idiopathic scoliosis diagnosed before maturity has been reported to be similar between brace-treated and surgically treated individuals. The aim of this study was to compare health-related quality of life in untreated, brace-treated, and surgically treated adults with idiopathic scoliosis diagnosed before skeletal maturity. Subgroup analyses were performed on the basis of age at the time of the study, age of onset, surgical characteristics, and curve magnitude., Methods: We included 1,187 adults with juvenile or adolescent idiopathic scoliosis with a mean age (and standard deviation) of 38.8 ±12.7 years. Of these, 347 were untreated, 459 had been brace-treated, and 381 had been surgically treated. The Scoliosis Research Society-22r (SRS-22r) and EuroQol 5-Dimensions (EQ-5D) were used. Statistical analyses were performed using analysis of covariance., Results: The mean SRS-22r subscore was 4.15 ± 0.59 points for the untreated group, 4.10 ± 0.57 points for the previously braced group, and 4.01 ± 0.64 points for the surgically treated group (p = 0.007 adjusted for age and sex). The EQ-5D index was 0.82 ± 0.20 for the untreated group, 0.82 ± 0.20 for the previously brace-treated group, and 0.79 ± 0.24 for the surgically treated group (p = 0.026, adjusted for age and sex). Brace cessation was at the mean age of 16.2 ± 1.5 years, and the surgical procedure had been performed at the mean age of 15.3 ± 2.1 years. A more caudal fusion was associated with a lower SRS-22r subscore and EQ-5D index. No differences were observed when comparing individuals with juvenile or adolescent onset scoliosis (all p > 0.05)., Conclusions: Untreated adults with idiopathic scoliosis had similar health-related quality of life to previously brace-treated individuals, and they had marginally higher health-related quality of life compared with surgically treated individuals. Therefore, both surgical and brace treatments for idiopathic scoliosis could be considered successful from a health-related quality-of-life point of view in adulthood. The age of onset of idiopathic scoliosis does not seem to influence quality of life in adulthood., Level of Evidence: Therapeutic Level III. See Instructions for Authors for a complete description of levels of evidence.

Background: Appearance concerns in individuals with adolescent idiopathic scoliosis can result in impairment in daily functioning, or body image disturbance. The Body Image Disturbance Questionnaire (BIDQ) is a self-reported, seven-question instrument that measures body image disturbance in general populations; no studies have specifically examined body image disturbance in those with adolescent idiopathic scoliosis. This study aimed to validate a modified version of the BIDQ in a population with adolescent idiopathic scoliosis and to establish discriminant validity by comparing responses of operatively and nonoperatively treated patients with those of normal controls., Methods: In the first phase, a multicenter study of forty-nine patients (mean age, fourteen years; thirty-seven female) with adolescent idiopathic scoliosis was performed to validate the BIDQ-Scoliosis version (BIDQ-S). Participants completed the BIDQ-S, Scoliosis Research Society (SRS)-22, Children's Depression Index (CDI), and Body Esteem Scale for Adolescents and Adults (BESAA) questionnaires. Descriptive statistics and Pearson correlation coefficients were calculated. In the second phase, ninety-eight patients with adolescent idiopathic scoliosis (mean age, 15.7 years; seventy-five female) matched by age and sex with ninety-eight healthy adolescents were enrolled into a single-center study to evaluate the discriminant validity of the BIDQ-S. Subjects completed the BIDQ-S and a demographic form before treatment. Independent-sample t tests and Pearson correlation coefficients were calculated., Results: The BIDQ-S was internally consistent (Cronbach alpha = 0.82), and corrected item total correlations ranged from 0.47 to 0.67. The BIDQ-S was significantly correlated with each domain of the SRS-22 and the total score (r = -0.50 to -0.72, p ≤ 0.001), with the CDI (r = 0.31, p = 0.03), and with the BESAA (r = 0.60, p < 0.001). BIDQ-S scores differed significantly between patients (1.50) and controls (1.06, p < 0.005), establishing discriminant validity., Conclusions: The BIDQ-S is an internally consistent outcomes instrument that correlated with the SRS-22, CDI, and BESAA outcomes instruments in a scoliosis population. The scores of the patients with scoliosis indicated greater back-related body image disturbance compared with healthy controls. To our knowledge, this user-friendly instrument is the first to examine body image disturbance in adolescent idiopathic scoliosis, and it provides a comprehensive evaluation of how scoliosis-related appearance concerns impact psychosocial and daily functioning.

Background: Randomized controlled trials are powerful tools to evaluate the outcomes of clinical treatments. However, these trials tend to be expensive and time-consuming, and their conclusions can be threatened by several limitations. This study estimated the strength of three common limitations (underenrollment, selective enrollment, and nonadherence to protocol) in a proposed study of adolescent idiopathic scoliosis., Methods: Patients with scoliosis and their parents were asked to complete a web-based survey about their preferences concerning a hypothetical randomized trial. Adolescents without scoliosis and their parents also participated. Surveys included questions about treatment preference, likelihood of participation, required risk reduction, and propensity to drop out or choose a different treatment while enrolled in the study., Results: Ninety adolescents and eighty-three parents participated. Observation was preferred to bracing by the majority of subjects. Overall, 33% of the parents and adolescents would both agree to participate in the hypothetical trial. Of the subjects who would not agree to participate, the majority would rather share the decision-making responsibility with the physician than have the treatment chosen in a random fashion. Many of the subjects would consider changing treatments during the course of the trial if they were not satisfied with the outcomes; the majority of parents who preferred bracing would consider crossing over to the bracing arm if their children were randomized to observation., Conclusions: Recruitment into a randomized trial of bracing compared with observation for the treatment of adolescent idiopathic scoliosis may well be problematic, considering the relatively small percentage of families who said they would consider randomization. Additionally, the threat of nonadherence to protocol may be strong and must be addressed in the protocol of the trial. Most families wanted to make the treatment decision with the physician in lieu of randomization; therefore, the role of the physician in patient recruitment and retention should not be underestimated.

Background: The aim of surgical treatment for adolescent idiopathic scoliosis is primarily to prevent progression and secondarily to correct the deformity, whereas the goal of surgical treatment of pediatric spondylolisthesis is mainly to relieve pain and, in patients with a high-grade slip, to prevent progression. The aim of this study was to compare the long-term health-related quality of life after surgery for idiopathic scoliosis and spondylolisthesis in adolescence., Methods: One hundred and ninety patients, with a mean age of fifteen years, who were treated surgically for adolescent idiopathic scoliosis and 270 patients, with a mean age of sixteen years, who were treated surgically for low-grade or high-grade spondylolisthesis participated in the present study. The mean duration of follow-up was 14.8 years for the scoliosis group and 17.0 years for the spondylolisthesis group. Radiographs were made preoperatively, at the time of the two-year follow-up, and at the time of the final follow-up. Additionally, a physical examination was performed, and the Scoliosis Research Society-24 and Short Form-36 questionnaires were completed at the final follow-up evaluation., Results: The median total score on the Scoliosis Research Society questionnaire was 102 (range, 63 to 118) for the scoliosis group and 95 (range, 42 to 115) for the spondylolisthesis group (p < 0.001). After adjusting for age at the time of surgery, gender, and duration of follow-up, the patients with scoliosis had a significantly higher odds ratio for a good total score (> or = 90 points) on the Scoliosis Research Society questionnaire than did patients with spondylolisthesis (odds ratio, 2.65 [95% confidence interval, 1.58 to 4.44]; p = 0.0002). Patients in the scoliosis group had better values for general self-image, postoperative self-image, and postoperative function than did patients in the spondylolisthesis group (p < 0.001). Sixteen patients in both groups reported that they had back pain often or very often at rest. The standardized physical component scale on the Short Form-36 yielded slightly but significantly better values for the scoliosis group (median, 53.8 points; range, 32 to 61 points) compared with the spondylolisthesis group (median, 53.4 points; range, 27 to 59 points) (p = 0.01)., Conclusions: Patients have good long-term health-related quality of life after surgery for idiopathic scoliosis and spondylolisthesis in adolescence. Patients who have surgery for idiopathic scoliosis are likely to have better long-term outcomes than are patients who have surgery for spondylolisthesis. It is possible that back pain in adolescence may affect quality of life more than spinal deformity does.

To assess individual preferences for a method of scoliosis surgery, we surveyed 224 teen-age patients, their parents, orthopaedic surgeons, and other health professionals. Rather than asking the respondents directly for the relative importance that they would assign to the four possible outcomes, we employed conjoint analysis, a preference measurement technique that is widely used in marketing and psychology. In conjoint analysis, respondents explicitly trade off the relative desirability of certain aspects of the outcome of scoliosis surgery--for example, between greater degree of curve correction or greater risk of reoperation. This study indicated that risk of nerve damage had the highest relative importance to the respondents, followed by risk of reoperation, curve correction, and aftercare, in that order. This ranking was found in all five groups of respondents.

The outcome of surgical treatment of idiopathic scoliosis in forty-five adults was studied with special attention to pain, function, self-image, and pulmonary function. All of the patients were more than twenty-five years old at operation and had been followed for more than three years. Every patient who was operated on by one of us (J. E. H.) and who met these criteria was evaluated. The magnitude of the curves averaged 66 degrees. Standardized gradations of pain and function showed improvement over-all, but significant impairment remained. There was a reduction in the levels of peak and constant pain, but no change in the frequency of peak pain after operation. The number of patients who were pain-free after surgery was not increased. Functional impairment due to the scoliosis was lessened, and the ability to perform the common activities of daily living was improved, but no important changes in occupation or recreational activity were recorded. Correlations of pain or function, or both, and the changes in either, were found with only two parameters: age at follow-up and physical occupation. Pulmonary function, as measured, did not change. Eighteen (40 per cent) of the patients had a minor complication and ten (20 per cent), a major complication; there was one death, due to pulmonary embolism, of a patient who was excluded from the series. In view of the high rate of complications, the limited gains to be derived from spinal fusion should be assessed and clearly explained to patients before the procedure is undertaken.

One hundred and ten scoliotic patients underwent correction and spine fusion by one of us (J. H. M.) at Gillette Children's Hospital between 1947 and 1957. Sixty-one of these patients were evaluated in 1977 for this follow-up study. The evaluation consisted of physical and roentgenographic examination, photographs, and a detailed psychosocial analysis. The aims of the study were to evaluate: (1) the long-term stability of the fusion; (2) the incidence and severity of low-back pain; and (3) the degree of integration of the patient into society. The results showed that a solid fusion had no significant loss of correction with time. Eighty-four per cent of the patients lost only zero to 5 degrees of correction during an average follow-up of twenty-six years. Low-back pain was found to be no more frequent than in the normal population in this age group, and there was less low-back pain than in a comparable series of scoliotic patients without fusion. There was no correlation between the occurrence of low-back pain and the length or magnitude of the fused curve or the lowest extent of the fusion. An unexpected finding was the high incidence of neck pain, the cause of which is unknown. Psychosocial analysis revealed that the patients were productive, active, stable persons who were working and contributing members of society.