“I am trapped in my body”: a qualitative exploration of bodily experiences during brace treatment among adolescents with idiopathic scoliosis

Adolescent idiopathic scoliosis, bracing, and the Hueter-Volkmann principle

<p>The purpose of this study was to improve our understanding of uncertainty in Adolescent Idiopathic Scoliosis (AIS), which is a chronic illness involving curvature of the spine and is typically diagnosed in late childhood or early adolescence. The timing of most AIS diagnosis and its subsequent treatment occurs at a critical point developmentally and may place strain on adolescents with AIS and their parents. This dissertation includes two studies.</p> <p>The first study used Cash's (2011) cognitive-behavioral perspective on body image as the framework to assess whether brace treatment had a negative impact on body image appraisals in female adolescents participating in a clinical trial. Contrary to previous studies, this study found that brace treatment did not have a negative impact on female adolescents' body image and that poor body image did not result in brace treatment non-adherence. However, this study found significant correlations in adolescents with AIS between poorer body image and poorer quality-of-life.</p> <p>The second study used Uncertainty Management Theory as the framework for exploring adolescents' and parents' AIS-related uncertainties that were participating in online support groups. Results from this study suggest that adolescents with AIS and parents of a child with AIS are managing their uncertainties regarding the illness and its treatment however, the way they manage the uncertainty is different, in particular regarding appraisals of the uncertainties, whether they are seeking or avoiding information, and the types of social support that is being sought and provided. Parents of a child with AIS tended to seek information regarding the uncertainty surrounding the AIS condition, including information regarding doctors/hospitals and research, while adolescents tended to be participating in the online support groups for the purposes of seeking and providing support to other adolescents that have been or currently are in similar situations, such as wearing a brace. These findings are critical, because differences in uncertainty management behaviors between adolescents and parents, such as the ones that were found in the AIS-related online support group, could result in differences in understandings, concerns, preferences, and expectations regarding the illness and its treatments, which may result in family conflict, poor clinical health outcomes in adolescents and poor psychosocial outcomes in adolescents and in their parents.</p> <p>This study is significant in that it explored AIS-related uncertainty in two entirely different settings where theoretical applications are rare, in a clinical trial and in online support groups. The results from this dissertation suggest that Uncertainty Management Theory and Cash's (2011) cognitive-behavioral perspective on body image may be adapted for these contexts. The synthesis of the findings from across this dissertation suggests that the clinical and psychosocial health outcomes of adolescents with AIS and the psychosocial outcomes of their parents, may be improved through communication tools, such as adolescents, their parents, and providers working together through a treatment decision flow chart to elicit AIS-related current understandings, concerns, preferences, and expectation, which will result in shared decisions. Finally, as new technologies expands and are integrated into decisions regarding illness, findings from this dissertation can be used to improve health communication, support interventions, and policy development.</p>

A long-term, population based, retrospective follow-up study. To evaluate long-term outcomes of brace and surgical treatment for spinal deformities in patients with diastrophic dysplasia (DD). Literature on the brace treatment and surgery of spinal deformities in patients with DD is limited. All patients with DD undergoing either brace treatment or surgery for spinal deformity with a minimum of 2 years follow-up were identified in our country. Eight patients had undergone brace treatment and 12 had been treated operatively. Two patients had early progressive and the rest idiopathic-like scoliosis. Five patients underwent posterior only, 1 anterior only, and 6 anteroposterior surgery. Patients' mean age at the beginning of brace treatment was 6.9 (range, 0.9-12.7) years and at the time of surgery 13.4 (range, 6.5-20.1) years. The follow-up time averaged 17 (range, 6.6-44.3) years for the brace and 14.0 (range, 2.1-37.2) years for the surgical treatment group. The radiographic follow-up rate was 100%. Both thoracic and lumbar curves progressed during brace treatment (mean major curve progression 12%, range, -43%-53%). Before surgery, the mean Cobb angle of the thoracic curve was 68 degrees (range, 42 degrees-100 degrees) and 46 degrees (25 degrees-68 degrees) in the lumbar spine. At final follow-up visit, the mean correction was 23% (-6%-76%) for the thoracic curve and 25% (-68%-82%) for the lumbar curve. The correction of the major curve was higher in patients undergoing anteroposterior versus posterior only (40% vs. 13%, P = 0.017). Five (42%) operated patients had significant complications. The SRS-24 yielded 92 (79-103) points for the brace treatment and 93 (73-114) points for the surgical group, respectively. Brace treatment does not prevent progression of the spinal deformity in patients with DD. Anteroposterior surgery is indicated in patients with severe spinal deformities. The risk for major complications is high especially in patients with marked kyphosis.

PurposeBrace treatment for adolescent idiopathic scoliosis (AIS) is usually prescribed for 20–40° curves in patients with growth potential. The aim is to reduce the risk of curve progression during growth and to avoid the curve reaching a surgical threshold. Having as small a curve as possible at skeletal maturity will reduce the risk of curve progression during adult life. While evidence exists for brace treatment in AIS, there is disagreement on how and when to discontinue bracing. The purpose of this review was to investigate what criteria have been reported for initiating brace cessation and published weaning protocols and to look at estimates of the number of patients that may progress > 5 degrees after the end of growth.MethodsThis scoping review summarizes existing knowledge on the best time to stop bracing in AIS patients, how to “wean,” and what happens to spinal curves after bracing. Searches were carried out through MEDLINE, EMBASE, and PsycINFO in April 2022. A total of 1936 articles were reduced to 43 by 3 reviewers. Full papers were obtained, and data were extracted.ResultsWeaning was most commonly determined by Risser 4 (girls) and 5 (boys). Other requirements included 2 years post-menarche and no growth in standing/sitting height for 6 months. Skeletal maturity assessed from hand and wrist radiographs, e.g., Sanders’ stage; distal radius and ulnar physes, could determine the optimal weaning time to minimize curve progression. Complete discontinuation was the most common option at skeletal maturity; variations on weaning protocols involved gradual reduction of bracing over 6–12 months. Curve progression after weaning is common. The 12 studies reporting early curve progression after brace weaning found a mean Cobb angle progression of 3.8° (n = 1655). From the seven studies reporting early curve progression by > 5 degrees, there were 236/700 (34%) patients. There is limited information on risk factors to predict early curve progression after finishing brace treatment with larger curves, especially those over 40 degrees possibly having more chance of progression.ConclusionCurve progression after bracing cessation is a negative outcome for patients who have tolerated bracing for several years, especially if surgery is required. The literature shows that when to start brace cessation and weaning protocols vary. Approximately 34% of patients progressed by more than 5 degrees at 2–4 years after brace cessation or weaning. Larger curves seem more likely to progress. More research is needed to evaluate the risk factors for curve progression after brace treatment, defining the best time to stop bracing based on the lowest risk of curve progression and whether there is any benefit to weaning.

Does Curve Regression Occur During Underarm Bracing in Patients with Adolescent Idiopathic Scoliosis?

Background. Brace treatment is frequently used in adolescent idiopathic scoliosis (AIS). However, due to different brace models, long-term results on spinal deformity development at the end of Chneau brace treatment are not often described and differ in results.
 Aim. The aim of this work was to analyze clinical and radiological data of AIS patients treated with Chneau braces from the beginning of treatment until the end of growth and brace therapy in order to define realistic treatment results and expectations in an everyday setting.
 Materials and methods. 52 AIS patients with Chneau brace treatment were followed from the beginning of treatment until the end of growth. Clinical data such as the initial Risser sign, age at treatment, gender, curve patterns and body mass index were analyzed.
 Results. At the beginning of brace therapy, the average age was 13.1 years and patients showed a mean scoliotic curve angle of 30.9. Four months of brace use reduced the scoliotic curve to 20.1. Nine months after the end of brace treatment and an average treatment duration of 17 months, scoliosis has increased up to 30.3 again. In children with a lower maturity status, the initial scoliotic curve was less than in more mature patients leading to less spinal deformity at the end of treatment. In addition, obese children had less scoliosis correction during brace therapy than normalweight children.
 Conclusion. In patients with AIS treated with a Chneau brace, the initial curvature correction was 35%. Nine months after the end of brace treatment, scoliotic curves identical to the deformities at the beginning of treatment could be observed.

Research Article| February 01 2014 Effects of Bracing in Adolescents With Idiopathic Scoliosis AAP Grand Rounds (2014) 31 (2): 14. https://doi.org/10.1542/gr.31-2-14 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Twitter LinkedIn Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Effects of Bracing in Adolescents With Idiopathic Scoliosis. AAP Grand Rounds February 2014; 31 (2): 14. https://doi.org/10.1542/gr.31-2-14 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search nav search search input Search input auto suggest search filter All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: braces, idiopathic scoliosis, scoliosis Source: Weinstein SL, Dolan LA, Wright JG, et al. Effects of bracing in adolescents with idiopathic scoliosis. N Engl J Med. 2013; 369(16): 1512– 1521; doi: https://doi.org/10.1056/NEJMoa1307337Google Scholar Investigators from the University of Iowa and Washington University sought to determine the effect of bracing on curve progression and rate of surgery in adolescents with idiopathic scoliosis. They conducted a multicenter (25 institutions) randomized trial of patients with scoliosis and typical indications for bracing including age, skeletal maturity, and degree of curve (Cobb angle of 20° to 40°). Both a randomized cohort (randomized to bracing or observation) and a preference cohort were enrolled. Patients in the bracing group (both those randomized and those choosing this treatment) were instructed to wear the brace at least 18 hours per day. Wear time was measured by means of a temperature logger embedded in the brace that logged the date, time, and temperature every 15 minutes. A temperature of 28°C or higher indicated that the brace was being worn. The primary outcome, treatment failure, was defined as curve progression to ≥50°. Treatment success was defined as the patient reaching skeletal maturity without this degree of curve progression. Rates of treatment success were compared between those in the bracing and observation groups. A secondary analysis was conducted to assess the impact on treatment success of the number of hours per day of wearing the brace. A total of 242 patients (age range 10–15 years) were enrolled in the study, including 116 who agreed to be randomized to bracing or observation and 126 who chose between bracing (71%) and observation (29%). The trial was stopped early due to the efficacy of bracing. The overall rate of treatment success was 72% after bracing as compared to 48% after observation (OR = 1.93; 95% CI, 1.08–3.46). Among study participants in the randomized part of the study, the rate of treatment success was 75% among those assigned to bracing as compared with 42% in those randomly assigned to observation (OR = 4.11; 95% CI, 1.85–9.16). There was a significant positive association between hours of brace wear and treatment success (P < .001). Success rate was >90% in patients who wore the brace for at least 13 hours per day and 41% in those who wore the brace for 0 to 6 hours per day. Adverse events included a rash under the brace in 12 of 146 patients (8%) who wore the brace and hospitalization for anxiety and depression in another patient who wore the brace. The authors conclude that bracing significantly reduced the progression of high-risk spinal curves and reduced the need for surgery in adolescents with idiopathic scoliosis. Dr Hennrikus has disclosed no financial relationship relevant to this commentary. The commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. Idiopathic adolescent scoliosis develops in about 3% of children. Approximately 0.3% of children progress to spinal curves greater than 20° – a... You do not currently have access to this content.

Background:Clinical evidence regarding the ability of braces to decrease the risk of curve progression to surgical threshold in patients with adolescent idiopathic scoliosis (AIS) continues to strengthen. Unfortunately, there is still a great deal of uncertainty regarding the impact of brace wear on psychosocial well-being or the impact of psychological well-being on brace wear adherence. The purpose of this study is to evaluate psychosocial well-being, in particular body image and quality of life (QOL), and brace wear adherence in female AIS patients undergoing brace treatment.Methods:The Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST) was a multicenter, controlled trial using randomized and preference assignments into an observation or brace treatment group. BrAIST patients were skeletally immature adolescents diagnosed with AIS having moderate curve sizes (20 to 40 degrees). Patients in the bracing group were instructed to wear a thoracolumbosacral orthosis, at least 18 h/d. Scores on the Spinal Appearance Questionnaire and the PedsQL4.0 Generic Scales from 167 female BrAIST patients who were randomized to brace treatment (n=58) and patients who chose brace treatment (n=109) were analyzed.Results:At baseline and at 12 months, no differences were found between the least-adherent brace wear group (<6 h/d) and most-adherent brace wear group (≥12 h/d) patients in terms of major curve, body image, and QOL. In the most-adherent group, poorer body image scores were significantly correlated with poorer QOL scores at baseline, at 6 months, and at 12 months but not at 18 months. In general, body image scores and QOL scores were not significantly correlated in the least-adherent group. When comparing patients that had a ≥6 degree increase of their major curve between baseline and 12 months to patients that did not, there were no significant differences in body image or QOL scores.Conclusions:For females adolescents with AIS, body image and QOL do not have a significant impact on brace wear adherence and are subsequently not significantly impacted by brace wear.Level of Evidence:Level II—therapeutic (prospective comparative study).

Timeline of curve progression around menarche in small adolescent idiopathic scoliosis curves without influence of braces: a single-center longitudinal cohort study of 1,090 patients.

Previous studies have shown a significant association between osteopenia and adolescent idiopathic scoliosis (AIS). And initial bone mineral density (BMD) was proposed to serve as a new prognostic factor of curve progression in AIS. However, it remains unknown whether there is a link between the initial bone mineral status and the outcome of brace treatment. This study aimed to investigate whether the initial bone mineral status could influence the final outcome of brace treatment in AIS. Girls with AIS treated with brace treatment were recruited. These patients either completed brace treatment, or were indicated for correction surgery with a curve magnitude of >45 degrees. Patients with a progressed scoliosis (group A) and those with a nonprogressed scoliosis (group B) were identified. The associations between the bracing outcome and the indices before bracing, including growth status, anthropometric measurements, BMD status, curve magnitude, and curve pattern were evaluated using univariate analysis and regression analysis. Sixty-eight patients were included. There were 17 girls (25%) in group A and 51 girls (75%) in group B, respectively. The girls in group A had a significantly larger initial Cobb angle (32.3±6.6 vs. 29.1±5.3 degrees), a significantly lower BMD of lumbar spine from L2 to L4 value (0.80±0.11 vs. 0.88±0.12 g/cm), and a marginally significantly lower Risser grade (1.4±1.5 vs. 2.2±1.4), than in group B. In comparison with group B, more girls in group A were found to be premenarche (P=0.008), osteopenic (P=0.003), with a lower Risser grade (P=0.079), a greater curve magnitude (P=0.159), and a main thoracic pattern (P=0.122) before the initiation of bracing treatment. As revealed by the multiple logistic regression analysis, osteopenia (P=0.002) was identified as an independent risk factor in curve progression in AIS girls, during the total duration of bracing treatment. Osteopenia is identified to serve as a new independent risk factor in the curve progression during the duration of bracing treatment. The evaluation of initial BMD status before bracing may help to predict the outcome of brace treatment. Level II.

Scoliosis appears to occur in approximately one-third of patients with Charcot-Marie-Tooth disease. Little is known about the response of these curves to treatment. The purpose of this study was to establish the prevalence of scoliosis in a large population of children and adolescents with Charcot-Marie-Tooth disease, to evaluate factors linked with curve progression, and to assess the response to orthotic and surgical treatment. The medical records of 298 patients were retrospectively reviewed. Radiographs were reviewed for patients identified as having spinal deformity. The type, size, and progression of the scoliotic curve were measured, and the effectiveness of bracing and surgical treatment was assessed. Forty-five patients with scoliosis associated with Charcot-Marie-Tooth disease were identified. The average age at the diagnosis of the spinal deformity was 12.9 years, and the average curve magnitude at the time of diagnosis was 27.6 degrees. One-third of the curves were left thoracic, and 49% were associated with increased thoracic kyphosis. Twenty-four of the thirty-four curves that were followed for more than one year progressed. Brace treatment was successful in only three of sixteen patients. Surgery was performed in fourteen of the forty-five patients. Long posterior spinal fusions were performed most often, with an average of 13.1 spinal segments fused. Instrumentation was used in all posterior fusions. Intraoperative neurologic monitoring was possible for only three of the twelve patients for whom it was attempted during surgery, but there were no intraoperative neurologic complications. Scoliosis in patients with Charcot-Marie-Tooth disease differs from that in patients with idiopathic scoliosis. Thoracic hyperkyphosis is common, and bracing is usually unsuccessful. Surgical fusion does not appear to be associated with a high rate of complications, although it is often impossible to perform intraoperative neurologic monitoring.

Evidence-Based Medicine Summary Statement

Vertebra-disc ratio as a new predictor for curve progression in early thoracic AIS with bracing treatment

Outcomes of orthotic management of idiopathic scoliosis depend on patient compliance with brace wear. The purpose of this study was to determine if counseling based on objective compliance data increases brace wear and therefore reduces the likelihood of surgery. Two hundred and twenty-two patients with adolescent idiopathic scoliosis were prospectively enrolled in a study to determine if physician counseling based on data obtained from compliance monitors (sensors embedded in the brace) improves brace use and decreases curve progression. Patients were placed into two groups. In the counseled group, patients were aware of the compliance monitor in the brace and were counseled at each visit regarding downloaded brace-usage data. The patients in the noncounseled group were not told the purpose of the monitor in their brace, and the compliance data were not made available to the physician, orthotist, or patient. Ninety-three patients who were counseled with use of the compliance data and seventy-eight patients who were not so counseled completed bracing or underwent surgery; twenty-five patients were lost to follow-up before completing brace treatment, and twelve were still undergoing brace treatment at the time of the study review. The average curve magnitude at the initiation of bracing was 33.2° in the counseled group and 33.9° in the noncounseled group (p = 0.21 [not significant]). Patients in the counseled group wore their orthosis an average of 13.8 hours per day throughout their management, while noncounseled patients wore their brace an average of 10.8 hours per day (p = 0.002). Of the counseled patients who finished brace treatment, 59% did not have curve progression of ≥6°, whereas 25% had progression to ≥50° or to surgery. In the noncounseled group, 46% did not have curve progression of ≥6°, whereas 36% had progression to ≥50° or to surgery. Noncounseled patients who had curve progression to a magnitude requiring surgery wore their brace an average of 9.6 hours per day compared with 12.6 hours per day for the counseled patients who required surgery. The amount of daily brace wear by children who did not have curve progression to a magnitude requiring surgery was significantly greater than that by children who did require surgery (p = 0.029). Providing patients undergoing bracing for adolescent idiopathic scoliosis with feedback about their compliance with brace wear improves that compliance. Patients who wore their brace more hours per day had less curve progression. Patients in both groups who had curve progression to a magnitude requiring surgery wore their brace less than their counterparts for whom bracing was successful. Compliance monitoring and counseling based on that monitoring should become part of the clinical orthotic management of patients with adolescent idiopathic scoliosis.

As I approached the examination room of a patient with adolescent idiopathic scoliosis (AIS), the size of the folder with her radiographs struck me. Each image represented radiation exposure to her thyroid, breast tissue, and marrow, in addition to the expense of a clinic visit and the anxiety associated with decisions about the next visit, bracing, and perhaps surgery. What if we could have predicted at her first visit whether the small curve would need intervention, and how might that have changed her treatment? AIS is the most common spinal deformity in children. In my own career, I have treated many patients with AIS. Over that time, our knowledge about AIS has grown, and we now understand it to be a complex polygenic familial disorder1. Environmental or epigenetic influences on AIS have been suggested, but to my knowledge none have been verified. The possible combinations of causative genes result in a varied clinical presentation of AIS, with multiple curve types. About 4% of patients with AIS who have mild curves ultimately require surgery, while the rest have a more benign clinical course2. The challenge lies in prospectively identifying those who will have a progressive deformity and avoiding unnecessary treatment for the remaining patients. How do we "predict" curve progression? At present, biologic markers such as menarche onset, growth velocity, skeletal maturity, and Tanner stages are helpful in this regard, but these are not useful with mild AIS in the younger age group. Multiple clinic visits and numerous radiographs remind me that my decisions have sometimes been intuitive rather than evidence-based as our understanding of "the genetics of AIS" continues to evolve. Many studies have reported AIS-associated genes, but the critical question is, which ones have a large effect that rises to clinical importance? I was grateful to be part of a genome-wide association study (GWAS) that identified 53 single nucleotide polymorphisms (SNPs), or genetic variations, that are associated with AIS when tested in a specific cohort. The inclusion criteria were (1) a diagnosis of AIS, (2) curves with a Cobb angle measurement of 10° to 24°, and (3) a Risser stage of 0 to 2. The lower Cobb angle limit meets the threshold for a diagnosis of scoliosis, and at the upper limit, the curve has declared itself by progressing to the severity where treatment is an option. SNPs can be ethnicity-specific. In one study, thousands of DNA samples were submitted from across North America. The validation study cohort ultimately included only European Caucasians, that is, those with 4 Caucasian grandparents3, since >92% of those submitting samples considered themselves to be Caucasian. Unfortunately, the small number of samples from those identifying themselves as African or Asian did not permit a statistical analysis of those cohorts. A predictive algorithm derived from the SNP markers was calculated to have a negative predictive value of 98% accuracy when identifying patients whose curves would not progress to the severity requiring intervention. This was a critical answer to my clinical conundrums. However, I was disappointed that we had insufficient numbers to predict which patients would progress to surgery. Moreover, the bench-to-bedside process is seldom smooth. For example, self-declared ethnicity can be uncertain. In retrospective testing, we found that a substantial number of self-declared Caucasians had either an African or Asian admixture of DNA, which reduced the statistical accuracy of the test. In addition, there is a generally recognized interobserver measurement variation of 5° for the Cobb angle. The Cobb angle was listed as 24° for some of the patients who submitted DNA samples, when, on review, their curves clearly exceeded that measurement. Some clinicians unsuccessfully applied the test as an off-label, unvalidated method of predicting progression to a severe scoliosis. However, the test results were not a binary yes or no—they were a probability of progression or no progression. Uncertainty can be disquieting to both the physician and the patient. Furthermore, this genetic test was designed for a specific intended-use population. Some tried to apply it in a scoliosis clinic setting where there are many patients with large curves. Applying any test to the population where it was validated is necessary. For example, if the incidence of disease A in the general population is 2%, a validation study for the test in an infectious disease clinic might find a 40% positive rate, suggesting a lack of specificity, whereas if it were tested in a sequestered healthy population, it may be that none are affected, indicating a lack of sensitivity. Finally, genetic tests for AIS often generate legitimate questions from parents, such as will my other children have AIS, or will my grandchildren have AIS? Busy spine surgeons are not genetic counselors and, unfortunately, genetic counselors know little about decision-making regarding patients with AIS. Who will be the bearer of this information? There have been revolutionary advances in DNA analysis, and more are anticipated. Current technology allows sequencing of the whole exome, the part of the genome that codes for proteins, in 24 hours, at an increasingly lower cost. Although the exome constitutes only about 1.7% of the genome, approximately 85% of genetic disorders can be identified in the exome. Preliminary investigation also has suggested that copy number variants may play an important role in AIS. New methodology may allow the identification of AIS genes with a large effect and allow molecular geneticists to understand the metabolic pathways that lead to spinal deformity and which combinations of AIS genes have the greatest prognostic value. The frequency of these causative alleles may vary among ethnic groups, but their molecular pathways may not. Thus, the use of DNA mutations could potentially enable a more precise, while societally more diverse, understanding of the causative genes using verifiable laboratory science. Answers to questions regarding AIS pathogenesis are not beyond our reach. Understanding the complex genetics of AIS will require adequate funding, a large database with qualified geneticists and bioinformatics scientists to analyze the petabytes of information that will be acquired, and a well-defined AIS phenotype that excludes early presentation of other genetic syndromes associated with spinal deformity that can be confused with early AIS. Collaboration across scientific disciplines and with spine clinicians will be necessary for success. Hopefully, the designation of "idiopathic" will become a quaint historical anachronism. In addition to providing accurate prognostic information to guide more efficient and effective AIS care, understanding molecular pathways could lead to personalized therapies that have preventive as well as therapeutic value. Clinical decision-making regarding AIS that is based on validated science will make the future better for spine surgeons and, most importantly, for our patients.