Parent-patient Discrepancies in the Quality of Life Assessment of Early-onset Scoliosis: A Comparison Between 2 Questionnaires Completed on 2 Different Time Points - A Preliminary Report.

BACKGROUND: EOSQ-24 is a parent proxy questionnaire designed to assess the health-related quality of life (HRQoL) of early-onset scoliosis (EOS) patients during their childhood years. EOSQ-SELF, a novel self-reported questionnaire, assesses HRQoL in older children (>8 y) and adolescents. So far, the same group of EOS patients has not been evaluated with both EOSQ-24 and EOSQ-SELF. The aim of this study was to evaluate how the same pathology was reflected in the parent and patient at different time points by comparing the answers to the common questions between EOSQ-24 and EOSQ-SELF. METHODS: A group of otherwise healthy EOS patients whose parents filled out EOSQ-24 at the early phase of growth-friendly treatment was re-tested by the EOSQ-SELF questionnaire at the end of treatment. Both EOSQ-24 and EOSQ-SELF are validated in Turkish. Inclusion criteria were patients with EOS, independent ambulation, age of 8 years or older at EOSQ-SELF enrollment, literacy in Turkish, no apparent intellectual impairment, and a minimum of 24 months after graduation. The common questions between the 2 surveys with nearly identical phrasings were extracted. Common items from the 2 tests were compared with a Wilcoxon signed rank test. RESULTS: Twenty-one patients (15 females, 6 males) who previously filled out EOSQ-24 met the inclusion criteria. The mean age of the group was 10 (5 to 16) years at EOSQ-24 participation and 18 (13 to 24) at the final analysis. Fourteen questions were found common in 10 domains. The scores were significantly different in 5 questions of 4 domains. EOSQ-SELF had significantly less favorable scores in the pain/discomfort, pulmonary function, and fatigue/energy level domains. Scores in the parental burden/relationships domain were significantly higher (P<0.05). CONCLUSIONS: The self-reported group had a general trend of worse results. Parents and caregivers may not accurately perceive the problems of EOS patients. Our findings indicate a disconnect between caregivers and the patients, as both parties underreported the other side in some domains. These findings suggest the challenges faced by EOS patients are not adequately reflected on proxy questionnaires that assess the HRQoL of children. LEVEL OF EVIDENCE: Diagnostic Level I.

Reliability and validity of the adapted Finnish version of the early onset scoliosis questionnaire (EOSQ-24).

BACKGROUND: EOSQ-24 is a disease specific patient-reported outcome score used to assess the quality of life in patients with early-onset scoliosis. The aim of this study was to translate and cross-culturally adapt the English version of the EOSQ-24 to Finnish language and to assess the reliability and validity of the translation. METHODS: Cross-cultural adaptation and cross-cultural validation were performed to the Finnish translation of the EOSQ-24. Patients and/or their caretakers were then recruited to assess the psychometric properties of the translation. We assessed the internal consistency, test-retest reliability, floor and ceiling effects, and discriminative abilities. One-hundred-and-three patients filled the questionnaire. RESULTS: EOSQ-24 was successfully translated into Finnish. The translation showed excellent internal consistency (Cronbach alpha 0.94), satisfactory item-total correlations ranging from 0.6 to 0.9, and moderate to strong inter item correlations. Test-retest reliability ranged from 0.7 to 0.96 indicating good to excellent agreement. Patients with neuromuscular and syndromic scoliosis reported lower EOSQ-24 scores when compared to patients' idiopathic and congenital scoliosis. There was a significant negative correlation between major curve and EOSQ-24 scores in patients with idiopathic early onset scoliosis. CONCLUSION: The internal consistency and test-retest reliability of the measure were found to be satisfactory. A marked ceiling effect was observed, indicating a potential source of error.

Health-Related Quality of Life of Patients with Postural Kyphosis Compared to Spinal Deformities in Adolescence: A Cross-Sectional Study.

AIM: To evaluate the quality of life of patients with postural kyphosis (PK) compared with those adolescent idiopathic scoliosis (AIS) and Scheuermann Kyphosis (SK). MATERIAL AND METHODS: Health-related quality of life (HRQoL) of adolescents with PK who were admitted to our clinic between January 2020 and June 2022 was compared with that of patients with AIS and SK who were admitted during the same period by using the Scoliosis Research Society-22 (SRS-22) questionnaire. All patients were asked to complete the SRS-22 questionnaire before the radiological evaluation. In the radiological evaluation, the sagittal and coronal deformities of the patients were measured. RESULTS: In total, 126 patients with PK were compared with age and sex-matched AIS patients and 42 SK patients. The mean SRS-22 function score of the PK group was 4.72 ± 0.3 while it was 4.38 ± 0.6 (p=0.015) in SK patients and it was 4.34 ± 0.6 (p < 0.001) in AIS patients. The mean SRS-22 pain scores of PK patients was 4.18 ± 0.7. The mean pain score was 3.68 ± 0.8 (p=0.033) in the SK group and 3.6 ± 0.8 (p=0.010) in the AIS group. Adolescents with PK perceived less pain than those with AIS or SK. The scores for the other domains of SRS-22 revealed no differences. CONCLUSION: HRQoL of patients with PK is reduced, similar to that of patients with common structural spine deformities. Recognizing the effects of PK on the HRQoL in adolescents can help physicians to treat these patients.

Do Caregivers and Patients With Early-Onset Scoliosis Share the Same Perspective on Health-Related Quality of Life? A Comparison of 24-item Early-Onset Scoliosis Questionnaire and 22-item Scoliosis Research Society Questionnaire Scores.

OBJECTIVE: The 24-item Early-Onset Scoliosis Questionnaire (EOSQ-24) is validated in patients with early onset scoliosis (EOS) aged 0 to 18 years and the 22-item Scoliosis Research Society (SRS-22) questionnaire is validated in idiopathic scoliosis patients 10 years and older. EOSQ-24 is completed by the caregiver and SRS-22 is completed by the patient. A prior study comparing patient-reported outcome measures completed by older pediatric patients and their parents showed a low level of agreement. Our purpose was to compare EOSQ-24 and SRS-22 scores completed at the same time point and at subsequent time points, in patients aged 5 to 18 years with idiopathic or congenital EOS without developmental delay. METHODS: This was a multicenter retrospective study. We identified pairs of EOSQ-24 and SRS-22 completed on the same day or within 6 months. Some patients had multiple pairs of surveys over time. EOSQ-24 and SRS-22 questions were matched and domain scores for Pain, Function, Mental Health, and Satisfaction were compared. Patients with a change in treatment between surveys were excluded. Pearson correlation coefficients ( r ) were used to compare domain scores, with r ≥0.7 indicating a strong relationship. RESULTS: There were 228 patient-caregiver dyads who completed 411 pairs of EOSQ-24 and SRS-22 on the same day. A strong correlation was found only for the Pain domain ( r =0.77). Function, Mental Health, and Satisfaction domains had positive but not strong correlations ( r = 0.58, r = 0.50, r = 0.41, respectively). Subanalysis based on age also showed a strong correlation only for Pain. There were 76 patient-caregiver dyads who completed 134 pairs of surveys with SRS-22 completed within 6 months after an EOSQ-24. All domains demonstrated a positive but not strong correlation, with Pain showing the highest correlation ( r = 0.64). CONCLUSIONS: EOSQ-24 and SRS-22 had a strong correlation only for Pain when completed at the same time point. EOSQ-24 and SRS-22 completed within 6 months lacked a strong correlation for all domains. Our findings suggest that parents and children with EOS may not share the same perspective on their health. Self-reported questionnaires should be used when possible to assess health-related quality of life in older children and adolescents with EOS who are developmentally neurotypical. LEVEL OF EVIDENCE: Level III-diagnostic.

What is the effect of preoperative depression on outcomes after minimally invasive surgery for adult spinal deformity? A prospective cohort analysis.

OBJECTIVE: Depression has been implicated with worse immediate postoperative outcomes in adult spinal deformity (ASD) correction, yet the specific impact of depression on those patients undergoing minimally invasive surgery (MIS) requires further clarity. This study aimed to evaluate the role of depression in the recovery of patients with ASD after undergoing MIS. METHODS: Patients who underwent MIS for ASD with a minimum postoperative follow-up of 1 year were included from a prospectively collected, multicenter registry. Two cohorts of patients were identified that consisted of either those affirming or denying depression on preoperative assessment. The patient-reported outcome measures (PROMs) compared included scores on the Oswestry Disability Index (ODI), numeric rating scale (NRS) for back and leg pain, Scoliosis Research Society Outcomes Questionnaire (SRS-22), SF-36 physical component summary, SF-36 mental component summary (MCS), EQ-5D, and EQ-5D visual analog scale. RESULTS: Twenty-seven of 147 (18.4%) patients screened positive for preoperative depression. The nondepressed cohort had an average of 4.83 levels fused, and the depressed cohort had 5.56 levels fused per patient (p = 0.267). At 1-year follow-up, 10 patients still reported depression, representing a 63% decrease. Postoperatively, both cohorts demonstrated improvement in their PROMs; however, at 1-year follow-up, those without depression had statistically better outcomes based on the EQ-5D, MCS, and SRS-22 scores (p < 0.05). Patients with depression continued to experience higher NRS leg scores at 1-year follow-up (3.63 vs 2.22, p = 0.018). After controlling for covariates, the authors found that depression significantly impacted only 1-year follow-up MCS scores (ß = 8.490, p < 0.05). CONCLUSIONS: Depressed and nondepressed patients reported similar improvements after MIS surgery, except MCS scores were more likely to improve in nondepressed patients.

The reunion with my patients: their journey and experience 30 years after their intervention for adolescent idiopathic scoliosis via CD instrumentation.

PURPOSE: Our objective was to collect the experience and current attitude of those patients, now adults, operated on for adolescent idiopathic scoliosis (AIS) more than 25 years ago with CD instrumentation (CDI). METHODS: Prospective qualitative cross-sectional study with interpretive phenomenological analysis approach of AIS patients operated in a single center with CDI between 1985 and 1995. Patients underwent a semi-structured interview with their original surgeon. Seven agreed themes were open for conversation, and several subthemes emerged related to their experience during their journey in life. Filed notes were recorded and transcribed verbatim. We used the method of content, semantic and pragmatic analysis. RESULTS: We contacted 103 patients, 100 agreed to participate. Mean age was 47.5 ± 3.3, mean follow-up was 30.9 ± 2.7 years. Three fundamental concerns stood out: discomfort with self-image; low back pain with daily activities; and lack of spinal flexibility. 50% were engaged in continuous physical exercise, and only some referred limitations with load-bearing work. Patients commonly described negative memories of the conservative treatment, but positive memories of the surgical process. In general, there was a good adaptation to social life (occupation, social and family relationships). Two-thirds were married, and 65 women had offspring. A frequent concern was the excess of radiographs over the years, and three developed breast cancer. CONCLUSIONS: Factors such as dissatisfaction with self-image, low back pain, and spine stiffness were relevant to patients throughout their journeys. Despite this, the great majority were satisfied with the treatment received, which allowed them to lead an integrated life in society. LEVEL OF EVIDENCE: Level II.

Adolescent idiopathic scoliosis: interdisciplinary creative art practice and nature connections.

Scoliosis is an abnormal lateral curvature of the spine with the large majority of cases classed as idiopathic, meaning there is no known cause. Typically, most cases occur in children and young people affecting approximately three per cent of the adult populace with five out of six cases being female. The BackBone: Interdisciplinary Creative Practices and Body Positive Resilience pilot research study used arts and humanities methods to measure the impact of adolescent idiopathic scoliosis (AIS) on well-being and body perception. The research aimed to contribute to a better understanding of alternative treatments towards improving quality of life in young women diagnosed with AIS. In particular, concentrating on two highlighted priorities from the Scoliosis Priority Setting Partnership: (1) How is quality of life affected by scoliosis and its treatment? How can we measure this in ways that are meaningful to patients? (2) How are the psychological impacts (including on body image) of diagnosis and treatment best managed.Using established medical techniques, art-based workshops, and focus groups with postoperative participants with AIS and their families we gathered both quantitative and qualitative data. The workshops explored the aesthetics of imperfection through material investigations that focus on the body as both an object and how it is experienced using the metaphor of tree images. Drawing parallels between the growth patterns of trees that, for complex and often unknown reasons, have grown unexpectedly we explored questions around ideological notions of perfect growth through art-making in a non-clinical setting. Uniquely, the pilot project sought to draw on insights from four key disciplines (art, medicine, psychology and human geography), thinking across boundaries to evoke different ways of knowing and understanding the complexities of body perception through image-making.

From PHQ-2 to SRS-22: how a depression screening tool relates to SRS scores in patients with adolescent idiopathic scoliosis.

PURPOSE: The aim of our study was to determine the relationship between Patient Health Questionnaire (PHQ) scores-a simple, validated depression screening tool-and Scoliosis Research Society (SRS)-22 questionnaire scores in patients with idiopathic scoliosis (IS). METHODS: IS patients screened for depression with the PHQ-2 who completed the SRS-22 over a 2-year period were reviewed. If PHQ-2 scores were positive (> 3), the more comprehensive PHQ-9 was administered. Median SRS-22 scores between positive and negative PHQ screens were compared. Nonparametric correlation between PHQ and SRS-22 Mental Health (MH) domain was performed. The ability of the MH domain to discriminate between patients with positive versus negative screens and patients with moderate-severe depression risk versus no-mild risk was evaluated with ROC analysis. RESULTS: 521 patients were included. Patients with + PHQ-2 screens had significantly lower total and individual domain SRS scores, especially within the MH domain (4.0 vs. 3.2). For those with moderate-severe depression risk, total and individual domain scores were also significantly lower (MH domain, 4.0 vs. 3.0, p < 0.05). A weak, but significant correlation was observed between the PHQ and MH domain scores (rho = 0.32, p < 0.001). A cut-off of ≥ 3.6 on the MH domain demonstrated sensitivity of 0.75 and specificity of 0.86 for identifying patients at no-mild risk for depression. CONCLUSION: Recognizing mental health conditions is critical to successful IS treatment as psychosocial conditions can negatively affect treatment outcomes. IS patients scoring < 3.6 on the SRS-22 MH domain should be considered for depression screening due to an increased risk of moderate-severe depression.

Heath-related quality of life and functional outcomes in patients with congenital or juvenile idiopathic scoliosis after an average follow-up of 25 years: a cohort study.

BACKGROUND CONTEXT: Congenital and juvenile scoliosis are both early-onset deformities that develop before the age of 10. Children are treated to prevent curve progression and problems in adulthood such as back pain and a decreased quality of life but literature on long-term outcomes remains scarce. PURPOSE: To evaluate the health-related quality of life (HRQoL) and potential disability of children with congenital scoliosis (CS) or juvenile idiopathic scoliosis (JIS) after a minimum of 20 years follow-up. STUDY DESIGN: Comparative cohort study. PATIENT SAMPLE: A consecutive cohort of CS and JIS patients were retrospectively identified from a single-center scoliosis database. Patients born between 1968 and 1981 and treated during skeletal growth were eligible for participation. OUTCOME MEASURES: HRQoL (SF-36, SRS-22r, ODI). METHODS: The primary aim was to evaluate the HRQoL of CS and JIS patients using the general SF-36 questionnaire. Both patient cohorts were compared with age-matched national norms. The secondary aim was to analyze the differences between conservatively and surgically treated patients using the scoliosis-specific Scoliosis Research Society-22r questionnaire (SRS-22r) and the Oswestry Disability Index (ODI). T-tests were used for statistical comparison. RESULTS: In total, 114 patients (67% of the eligible patients) completed the questionnaire, with a mean follow-up of 25.5±5.5 years after their final clinical follow-up. Twenty-nine patients with CS were included with a mean age of 44.4±3.8 years (79.3% female), and 85 patients with JIS with a mean age of 43.7±4.2 years (89.4% female). Of the SF-36 domains, only the vitality score (60.6±18.0 for CS and 58.1±17.6 for JIS cohort) and mental health score (70.0±18.4 for CS and 72.1±18.1 for JIS cohort) were significantly lower compared with the general population (68.6±19.3 for vitality, and 76.8±17.4 for mental health). These decreased scores were larger than the determined minimum clinically important difference threshold of 4.37. Surgically treated JIS patients had a significantly lower score on the SRS-22r pain domain than their nonsurgically treated peers (3.6±0.9 vs 4.1±0.7l p=.019). Surgically treated CS patients had a significantly higher score on the SRS-22r mental health domain than their nonsurgically treated peers (4.3±0.5 vs 3.5±1.0; p=.023). No significant differences were found in the other domains. CONCLUSIONS: Except for vitality and mental health domains, congenital and juvenile idiopathic scoliosis patients treated during skeletal growth had similar HRQoL on most SF-36 domains in adulthood compared with national norms. Surgical treated JIS patients experienced more pain compared with brace treated patients, while braced CS patients had a significantly lower mental scores compared with surgical treated patients. These long-term outcomes are essential to inform patients and can guide shared decision-making between clinicians and patients.

Greek Adaptation and Validation of the Bad Sobernheim Stress Questionnaire-Brace and the Bad Sobernheim Stress Questionnaire-Deformity.

Adolescent idiopathic scoliosis (AIS) is a progressive condition responsible for spinal deformity in all three planes. Spinal deformity and how the rib hump affects the aesthetics, and the functionality of the trunk can be a cause of psychological distress as well. Bracing as a treatment can have a negative impact on QoL, cause pain, affect participation levels in physical activities, and cause isolation and depression. Brace-induced stress may affect the patient's compliance with the treatment which may lead to scoliosis progression. The purpose of this study was to adapt and validate in the Greek language two instruments that can evaluate stress levels induced by bracing treatment and by deformity. The process of cross-cultural adaptation and validation of the Bad Sobernheim Stress Questionnaire-Brace (ΒSSQ-Brace) and the Bad Sobernheim Stress Questionnaire-Deformity (BSSQ-Deformity) followed the International Quality of Life Assessment Project (IQOLA) guidelines. Forty-seven AIS patients with a mean age of 14.4 ± 1.51 years, mean Cobb angle of 30.08 ± 9.25, and mean duration of the bracing treatment at 20.5 ± 12.2 months participated. The mean score for GR-BSSQ Brace was 14.04 ± 6.42, which is interpreted as medium stress, whereas the mean score for GR-BSSQ Deformity was 20.34 ± 3.78, which is interpreted as low stress. GR-BSSQ Brace demonstrated good internal consistency with Cronbach's α = 0.87. GR-BSSQ Deformity demonstrated acceptable internal consistency with Cronbach's α = 0.73. Both GR-BSSQ Brace and GR-BSSQ Deformity exhibited excellent test-retest reliability with ICC values of 0.94 (95% CI 0.89-0.97) and 0.92 (95% CI 0.86-0.95), respectively. BSSQ Brace and BSSQ Deformity questionnaires have been cross-culturally adapted into the Greek language and have been proven to be valid and reliable instruments measuring brace and deformity-induced stress. Both questionnaires can be used for clinical and research purposes in Greek-speaking population.

Psychosocial Effect of Brace Treatment in Adolescent Idiopathic Scoliosis: A Study Using EQ-5D.

STUDY DESIGN: Retrospective cohort study. OBJECTIVE: To evaluate psychosocial effect of brace treatment in adolescent idiopathic scoliosis (AIS) using EuroQoL 5-dimension (EQ-5D) depression and anxiety category. BACKGROUND: AIS is a structural abnormality of the spine often affecting patients during the puberty, a critical period of developing psychosocial problems. Many questionnaires had been adapted to evaluate mental health and health-related quality of life of AIS patients. However, these questionnaires are often time consuming and difficult to obtain. Therefore, a simpler substitute-EQ-5D-was evaluated. METHODS: This is a single-center retrospective cohort analysis of adult idiopathic scoliosis patients aged between 8 and 19, visiting outpatient's clinic. Beck's depression inventory, EQ-5D and EuroQoL visual assessment scale, and Objectified Body Consciousness Scale for Youth were compared between brace group and non-brace group of AIS patients. Furthermore, difference between male and female were evaluated within brace group. RESULTS: None of the questionnaire showed significant difference between brace and non-brace group. However, when male and female patients were compared within brace group, female patients were significantly more susceptible to depression and anxiety based on EQ-5D and body consciousness. Furthermore, depression and anxiety according to both BDI and EQ-5D were significantly correlated to health-related quality of life. CONCLUSION: During brace treatment of female AIS patients, psychosocial status played a significant role in health-related quality of life. EQ-5D is a simple way to monitor the mental health status.

Is higher compliance to brace therapy associated with poorer quality of life and self-image? A 36-months follow-up study.

BACKGROUND: Brace treatment is the most effective tool for avoiding curve progression in moderate adolescent idiopathic scoliosis and high adherence is required to achieve therapeutic success. Despite this, the compliance often is impaired by the concern about the psychological well-being of adolescents. OBJECTIVE: This 36-month follow-up study investigated if the patients most adherent to brace treatment could report a stronger impairment in the quality of life and body image. METHODS: 64 adolescents with idiopathic scoliosis responded to the Scoliosis Research Society-22 revised Patient Questionnaire at 12, 24, and 36 months after prescription of a TLSO rigid brace. Retrospectively, participants who wore a brace for more than 75% of the prescribed time were assigned to the good-compliance group (GC); the others formed the poor-compliance group (PC). RESULTS: At 12 months the GC group showed higher scores in treatment satisfaction and at 36 months they did not differ from the PC group in the overall SRS-22r score. Moreover, they achieved a statistically significant improvement in the scoliosis severity, although they showed lower scores in the self-image domain. CONCLUSION: In our patient's cohort, increased brace adherence does not compromise QoL and provides better treatment outcomes. However, more attention is needed to maintain good self-perception.

SRS-22r Self-Image After Surgery for Adolescent Idiopathic Scoliosis at 10-year Follow-up.

STUDY DESIGN: Retrospective cohort. OBJECTIVE: To examine SRS-Self Image scores at up to 10 years after surgery for adolescent idiopathic scoliosis (AIS). SUMMARY OF BACKGROUND DATA: Self-image is complex with implications for surgical and patient-reported outcomes after AIS surgery. Surgically modifiable factors that impact self-image are inconsistently reported in the literature with few longer-term reports. We examined the rate and durability of self-image improvement. MATERIALS AND METHODS: An AIS registry was queried for patients with up to 10 years of follow-up after AIS surgery. A mixed effects model estimated change in SRS-22 Self Image from baseline to 6 weeks, 1 year, 2 years, 5 years, and 10 years. All enrolled patients contributed data to the mixed effects models. A sub-analysis of patients with 1-year and 10-year follow-up evaluated worsening/static/improved SRS-22 Self Image scores examined stability of scores over that timeline. Baseline demographic data and 1-year deformity magnitude data were compared between groups using parametric and nonparametric tests as appropriate. RESULTS: Data from 4608 patients contributed data to the longitudinal model; 162 had 1-year and 10-year data. Mean SRS-Self Image improvement at 10-year follow-up was 1.0 (95% CI: 0.9-1.1) point. No significant changes in Self-Image domain scores were estimated from 1-year to 10-year (all P >0.05) postoperative. Forty (25%) patients had SRS-Self Image worsening from 1 year to 10 years, 36 (22%) improved, and 86 (53%) were unchanged. Patients who worsened over 10 years had lower SRS-Self Image at baseline than those unchanged at enrollment (3.3 vs. 3.7, P =0.007). Neither radiographic parameters nor SRS-Mental Health were different at baseline for the enrolled patients. CONCLUSION: Ten years after surgery, 75% of patients reported similar or better SRS-Self Image scores than one year after surgery. Nearly 25% of patients reported worsening self-image at 10 years. Patients who worsened had lower baseline SRS-Self Image scores, without radiographic or mental health differences at baseline or follow-up.

Adolescent idiopathic scoliosis patients treated with bracing, surgery, or observation showed no difference in behavioral and emotional function over a 2-year period.

The purpose of this study was to assess if behavior and emotional function, as measured by the Pearson Behavioral Assessment Survey for Children, Second Edition (BASC-2) in patients and parents, changes with differing treatment protocols in patients with adolescent idiopathic scoliosis (AIS). One previous study showed abnormal BASC-2 scores in a substantial number of patients diagnosed with AIS; however, no study has assessed how these scores change over the course of treatment. AIS patients aged 12 to 21 years completed the BASC-2. The 176-item questionnaire was administered to subjects at enrollment, assessing behavioral and emotional problems across 16 subscales of 5 domains: school problems, internalizing problems, inattention/hyperactivity, emotional symptoms index, and personal adjustment. Parents were given an equivalent assessment survey. Surveys were administered again after 2 years. Subject treatment groups (bracing, surgery, and observation) were established at enrollment. Patients were excluded if they did not complete the BASC-2 at both time points. Forty-six patients met the inclusion criteria, with 13 patients in the surgical, 20 in the bracing, and 13 in the observation treatment groups. At enrollment, 26% (12/46) of subjects with AIS had a clinically significant score in 1 or more subscales, and after 2 years 24% (11/46) of subjects reported a clinically significant score in at least 1 subscale (P = .8). There were no significant differences in scores between enrollment and follow-up in any treatment group. Similar to what was reported in a previous study, only 36% (4/11) of patients had clinically significant scores reported by both patient and parent, conversely 64% (7/11) of parents were unaware of their child's clinically significant behavioral and emotional problems. Common patient-reported subscales for clinically significant and at-risk scores at enrollment included anxiety (24%; 11/46), hyperactivity (24%; 11/46), attention problems (17%; 8/46), and self-esteem (17%; 8/46). At 2-year follow-up, the most commonly reported subscales were anxiety (28%; 13/46), somatization (20%; 9/46), and self-esteem (30%; 14/46). Patients with AIS, whether observed, braced or treated surgically, showed no significant change in behavior and emotional distress over the course of their treatment, or compared with each other at 2-year follow-up.

Comparable satisfaction and clinical outcomes after surgery for adolescent idiopathic scoliosis in the adult (AISA) between the US and Japan.

BACKGROUND: The impact of ethnicity on the surgery outcomes of adolescent idiopathic scoliosis in the adult (AISA) is poorly understood. This study aimed to compare the surgery outcomes for AISA between the United States (US) and Japan (JP). METHODS: 171 surgically treated AISA (20-40y) were consecutively collected from 2 separate multicenter databases. Patients were propensity-score matched for age, gender, curve type, levels fused, and 2y postop spinal alignment. Demographic and radiographic parameters were compared between the US and JP at baseline and 2y post-op. RESULTS: A total of 108 patients were matched by propensity score (age; US vs. JP: 29 ± 6 vs. 29 ± 7y, females: 76 vs. 76%, curve type [Schwab-SRS TypeT; TypeD; TypeL; TypeN]: 35; 35; 30; 0 vs. 37; 33; 30; 0%)] levels fused: 10 ± 4 vs. 10 ± 4, 2y thoracic curve:17 ± 13 vs. 17 ± 12°, 2y CSVL: 10 ± 8 vs. 11 ± 9 mm). Similar clinical improvement was achieved between US and JP (function; 4.2 ± 0.9 vs 4.3 ± 0.6, p = 0.60, pain; 3.8 ± 0.9 vs 4.1 ± 0.8, p = 0.13, satisfaction; 4.3 ± 0.9 vs 4.2 ± 0.7, p = 0.61, total; 4.0 ± 0.8 vs 4.1 ± 0.5, p = 0.60). The correlation analyzes indicated that postoperative SRS-22 subdomains correlated differently with satisfaction (all subdomains moderately correlated with satisfaction in the US while only pain and mental health correlated moderately with satisfaction in JP ([function: r = 0.61 vs 0.29, pain: r = . 72 vs 0.54, self-image: r = 0.72 vs 0.37, mental health: r = 0.64 vs 0.55]). CONCLUSIONS: Surgery for AISA was similarly effective in the US and JP. Satisfaction for spinal surgery among patients in different countries may not be different unless the procedure limits an individual's unique lifestyle that the patient expected to resume.

Why Don't Adolescents Wear Their Brace? A Prospective Study Investigating Psychosocial Characteristics That Predict Scoliosis Brace Wear.

BACKGROUND: Although bracing for adolescent idiopathic scoliosis can prevent curve progression and reduce the risk for future surgery, children frequently do not wear their braces as prescribed. The purpose of this study is to investigate how a broad array of psychosocial characteristics predict future compliance with scoliosis brace wear. METHODS: This was a single institution, prospective cohort study. All adolescents prescribed a first-time brace for adolescent idiopathic scoliosis were eligible. Patients and their parents completed a separate series of questionnaires that assessed baseline psychosocial characteristics across 6 domains: (1) brace-specific attitudes; (2) body image and self-esteem; (3) school performance and social relationships; (4) psychological health; (5) family functioning; and (6) demographics and scoliosis-specific details (242 total questions across 12 validated questionnaires). Objective brace compliance was collected using temperature-sensitive monitors. Defining compliance as percentage of brace prescription completed, comparative analyses were performed to identify baseline psychosocial characteristics that were associated with future wear. A composite measure (Bracing Fidelity Follow-Up Scale [BFFS]) of the 12 most predictive individual questions across all domains (both parent and adolescent) was constructed to help assess which adolescents were at highest risk of failure to wear their brace. Total BFFS score for each parent-adolescent dyad who completed all the included surveys was then determined by awarding one point for each factor that positively influenced future brace wear (maximum 12 points), and a correlation was calculated between total score and percent adherence to prescribed brace wear. RESULTS: A total of 41 patients were included. On average, patients with high self-esteem, above average peer relationships and poor brace-specific attitudes had lower brace compliance, although patients with increased loneliness and parental religiousness had higher compliance. Body image, socioeconomic status, family dynamics, and school performance had no significant relationship with brace use. Total score on the Bracing Fidelity Follow-Up Scale (BFFS) was significantly associated with improved brace wear (r=0.687, P <0.001). Those with a score of 6 or above (n=15/33 [45%], median compliance 96%) were more reliable users (15/15 with compliance >75%), and those with a score of 5 or less (n=18/33 [55%], median compliance 50%) had less consistent brace wear (9/18 with compliance <50%). CONCLUSION: This prospective study identifies numerous baseline psychosocial factors that are associated with future compliance with scoliosis brace wear. Although in need of further validation before widespread clinical application, the novel BFF scale offers a potential opportunity to partially discriminate between compliant and noncompliant scoliosis brace users such that supportive resources (eg, supportive counseling, peer-support groups, additional provider-based education, etc.) can be targeted to those patients most likely to benefit. LEVEL OF EVIDENCE: II.

Development and Validation of a Health-Related Quality-of-Life Measure in Older Children and Adolescents with Early-Onset Scoliosis: Early-Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF).

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.

Development of a model of interprofessional support interventions to enhance brace adherence in adolescents with idiopathic scoliosis: a qualitative study.

PURPOSE: Brace treatment for adolescent idiopathic scoliosis is recognized as effective if the brace is worn as prescribed (20 to 23 hrs/day). Because of its negative biopsychosocial impact on adolescent patients' quality of life, brace adherence is a common problem (average bracewear of 12 hrs/day). The purpose of this paper is to develop an interprofessional support intervention model to enhance brace adherence in adolescents with scoliosis. METHODS: We enrolled 9 health professionals working with braced patients to participate in individual interviews. Interview guides were built following the Information-Motivation-Strategy Model (DiMatteo et al., Health Psychol Rev 6:74-91, 2012) and the Interprofessional Care Competency Framework (Education UoTCfI, Toronto Acad Health Sci Network, 2017). Thematic analysis was performed to identify the most relevant concepts for designing the intervention model. A panel of 5 clinical experts was recruited to review and validate the intervention model. RESULTS: Participants suggested educational, motivational, functional, psychological and interprofessional teamwork strategies to improve the support provided to patients and parents and potentially increase brace adherence. Using the emerging themes and their relationships, we designed an Interprofessional Adherence Support (IPAS) intervention model that identifies the actors, activities, structure and intended impacts of the intervention. According to the expert panel, the IPAS model is highly relevant to respond to the brace adherence problem and has potential for implementation in practice. CONCLUSION: We designed an interprofessional support intervention model based on professional perspectives in response to the brace adherence problem in adolescents with scoliosis. Plans for implementation of the IPAS model at our scoliosis clinic are under development and considered essential for improving brace treatment outcomes.

Clinical Outcomes of Corrective Fusion Surgery From the Thoracic Spine to the Pelvis for Adult Spinal Deformity at 1, 2, and 5 years Postoperatively.

STUDY DESIGN: Retrospective cohort study. OBJECTIVE: To investigate whether patient-reported outcomes (PROs) were consistent at 2 and 5 years after corrective fusion surgery from the thoracic spine to the pelvis in patients with adult spinal deformity (ASD) and to analyze whether revision surgery affected long-term outcomes. SUMMARY OF BACKGROUND DATA: PROs up to 2 years after corrective surgeries for ASD have been well-studied, but there are few reports of mid- to long-term results. METHODS: We retrospectively analyzed patients with ASD who underwent corrective fusion surgery from the thoracic spine to the pelvis between 2010 and 2015. We investigated radiographic parameters and PROs (Scoliosis Research Society 22r [SRS-22r], Oswestry Disability Index [ODI]) preoperatively and at 1, 2, and 5 years postoperatively, and the correlations between PROs at these time points. We also compared changes in PROs at 5 years in patients who underwent revision surgery and those who did not. RESULTS: A total of 131 patients who underwent corrective fusion surgery from the thoracic spine to the pelvis were analyzed. The PROs at 1 and 5 years after surgery showed significant correlations in all SRS-22r domains (function [r  = 0.620], pain [r  = 0.577], self-image [r  = 0.563], mental health [r  = 0.589], subtotal [r  = 0.663], and ODI [r  = 0.654]). The PROs at 2 and 5 years after surgery showed significantly strong correlations in all domains (function [r  = 0.715], pain [r  = 0.678], self-image [r  = 0.653], mental health [r  = 0.675], subtotal [r  = 0.741], and ODI [r  = 0.746]). There were no significant differences in the change in PROs at 5 years in any domain in patients who underwent revision surgery (all P  > 0.05). CONCLUSION: One-year postoperative PROs improved significantly. Two-year PROs correlated strongly with 5-year postoperative PROs, indicating that 2-year PROs can predict longer term outcomes. The need for revision surgery did not influence the mid- to long-term clinical outcomes of corrective fusion surgery for ASD.Level of Evidence: 3.

Relevant impact of surgery on quality of life for adolescent idiopathic scoliosis : a registry-based two-year follow-up cohort study.

AIMS: To determine the value of scoliosis surgery, it is necessary to evaluate outcomes in domains that matter to patients. Since randomized trials on adolescent idiopathic scoliosis (AIS) are scarce, prospective cohort studies with comparable outcome measures are important. To enhance comparison, a core set of patient-related outcome measures is available. The aim of this study was to evaluate the outcomes of AIS fusion surgery at two-year follow-up using the core outcomes set. METHODS: AIS patients were systematically enrolled in an institutional registry. In all, 144 AIS patients aged ≤ 25 years undergoing primary surgery (median age 15 years (interquartile range 14 to 17) were included. Patient-reported (condition-specific and health-related quality of life (QoL); functional status; back and leg pain intensity) and clinician-reported outcomes (complications, revision surgery) were recorded. Changes in patient-reported outcome measures (PROMs) were analyzed using Friedman's analysis of variance. Clinical relevancy was determined using minimally important changes (Scoliosis Research Society (SRS)-22r), cut-off values for relevant effect on functioning (pain scores) and a patient-acceptable symptom state (PASS; Oswestry Disability Index). RESULTS: At baseline, 65 out of 144 patients (45%) reported numerical rating scale (NRS) back pain scores > 5. All PROMs significantly improved at two-year follow-up. Mean improvements in SRS-22r function (+ 1.2 (SD 0.6)), pain (+ 0.6 (SD 0.8)), and self-image (+ 1.1 (SD 0.7)) domain scores, and the SRS-22r total score (+ 0.5 (SD 0.5)), were clinically relevant. At two-year follow-up, 14 out of 144 patients (10%) reported NRS back pain > 5. Surgical site infections did not occur. Only one patient (0.7%) underwent revision surgery. CONCLUSION: Relevant improvement in functioning, condition-specific and health-related QoL, self-image, and a relevant decrease in pain is shown at two-year follow-up after fusion surgery for AIS, with few adverse events. Contrary to the general perception that AIS is a largely asymptomatic condition, nearly half of patients report significant preoperative back pain, which reduced to 10% at two-year follow-up. Cite this article: Bone Joint J 2022;104-B(2):265-273.