Abstract
Purpose
Scoliosis is a three-dimensional structural deformity of the spine that leads to restricted spinal motion, weakness in the paraspinal muscles, reduced cardiopulmonary function, and chronic physical and psychological pain. It also impacts patients’ quality of life. According to statistics, as of 2022, the number of Chinese primary and secondary school students with scoliosis has exceeded 5 million, and continues to grow at an annual rate of approximately 300,000 new cases, while the incidence of scoliosis in adults is even higher. Therefore, it is crucial to evaluate health-related quality of life (HR-QoL) in this population. This systematic review examined the frequency of use of HR-QoL outcome measurement instruments among patients with scoliosis in China and synthesized evidence on their measurement properties.
Methods
Stage 1: We searched databases including MEDLINE, EMBASE, Scopus, PubMed, and the Web of Science from inception to December 2023 to identify studies that examined HR-QoL among patients with scoliosis in China. A list of patient reported outcome measures used in clinical HR-QOL measurement for this population was derived from the selected studies. Stage 2: Reporting followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and AMSTAR (Assessing the methodological quality of systematic reviews) Guidelines. First, we used the COSMIN checklist to assess the methodological quality of studies that reported the measurement properties of the patient reported outcome measures used. Second, the COSMIN tool was used to assess the measurement properties of these instruments, and ratings (excellent, good, fair, or poor) were assigned for each measurement property. Finally, the best evidence was synthesized.
Results
In total, 155 studies were included, and 47 instruments were identified. The top five frequently used HR-QoL instruments for patients with scoliosis in China were the C-SRS-22, ODI, VAS, SF-36, and TC-SRS-22r. The measurement properties assessed included internal consistency (12 instruments), reliability (13 instruments), construct validity (9 instruments), ceiling and floor effects (8 instruments), and responsiveness (3 instruments). The C-ISYQOL had the best methodological quality. No studies assessing measurement properties of instruments for adults with scoliosis were found.
Conclusions
Based on limited research evidence, the C-ISYQOL currently demonstrates the best measurement performance among HR-QoL assessment instruments for Chinese scoliosis patients. However, due to potential publication bias resulting from the restriction of literature searches to published works (excluding grey literature), as well as minor impacts that strict adherence to COSMIN guidelines may still exert on measurement evaluations due to their inherent limitations, the number of studies supporting the favorable measurement properties of the C-ISYQOL remains insufficient. Therefore, it cannot currently be recommended as the preferred instrument for clinical measurement. Although the C-SRS-22 is widely used and has good reliability and validity for HR-QoL assessment in adolescent patients with scoliosis, its measurement properties have not been adequately evaluated in adult populations, and it is not currently supported for use in HR-QoL assessment of adults with scoliosis. Further studies assessing the measurement properties of these instruments are urgently needed.
Introduction
Scoliosis can be categorized into two main groups based on study populations: adolescent and adult scoliosis. Adolescent idiopathic scoliosis is the most common form of scoliosis (70%–80%) [1]. It has a prevalence of 0.47%–5.2% in the general adolescent population, and affects 2%–4% of adolescents [2]. The prevalence of scoliosis in people aged ≥40 years is 8.85% [3]. Furthermore, the condition is especially prevalent in people aged >65 years, affecting 32%–68% of the population [4]. Scoliosis has a range of reported and comorbidities and can lead to changes in physical appearance, impaired functional mobility, pain, social and psychological burden, and cardiorespiratory function problems, along with significant deterioration in quality of life [5,6]. In clinical practice, the degree of scoliosis correction and recovery of balance are often the objective basis for evaluating treatment efficacy, but patients’ subjective feelings (e.g., quality of life and life satisfaction) are generally neglected. The World Health Organization defines health-related quality of life (HR-QoL) as “an individual’s perception of his or her position in life in the context of the culture and value system in which he or she lives and in relation to his or her goals, expectations, standards and concerns” [7]. HR-QoL among patients with scoliosis has received increased attention from clinicians. Therefore, an effective HR-QoL instrument is an important indicator for assessing patients’ quality of life and the efficacy of clinical interventions for scoliosis, especially for individuals who choose to undergo surgery [8].
The assessment of HR-QoL for patients with scoliosis in China started relatively late and a unified understanding of assessment instruments is lacking, which limits research on quality of life and reduces the credibility of associated interventions for this population. In 1999, Haher et al. developed the Scoliosis Research Society (SRS) instrument [9], which was later improved by Asher et al. (SRS-22) [10]. This improved tool is now widely used in clinical assessment. The SRS-22 was designed to assess HR-QoL in adolescents with idiopathic scoliosis and subsequently became the outcome measure of choice for adult patients. In 2008, Li et al. translated the English version of the SRS-22 into Chinese and performed cross-cultural adaptation to obtain a simplified Chinese version of the SRS-22 (C-SRS-22) [11]. In addition, a large number of measurement instruments, such as the 36-item Short Form Health Survey (SF-36), ODI, and JOA have been used to assess HR-QoL among patients with scoliosis in China. Some of these instruments have been derived from simplified or traditional language versions because of economic and cultural differences in different regions. However, no previous study characterized the HR-QoL of patients with scoliosis in China in terms of the types of outcome measures used, frequency of use, and quality of measurement characteristics.
The Consensus-based Criteria for the Selection of Instruments for Measuring Health Status (COSMIN) is a quality assessment instrument for assessing methodological quality in studies using standardized measurements [12,13]. In 2010, Mokkink et al. conducted an international Delphi study and proposed the COSMIN Inventory, which comprised 10 domains: internal consistency, reliability, measurement error, content validity, structural validity, hypothesis testing, cross-cultural validity, criterion validity, responsiveness, and overall interpretability. The 2012 COSMIN Inventory assessment tool proved to be credible in 46 systematic evaluations [14].
In this study, we conducted a systematic evaluation of the literature on HR-QoL in Chinese patients with scoliosis. We aimed to examine the selection and frequency of use of HR-QOL measurement instruments for Chinese patients with scoliosis in the English-language literature published to date. We also applied the COSMIN scoring tool to systematically assess the measurement properties of the identified instruments.
Method and materials
Design
This systematic review used the updated COSMIN methodology for systematic reviews of patient reported outcome measures (PROMs). This systematic evaluation followed the newly revised Preferred Reporting Items for Systematic Evaluation and Meta-Analysis (PRISMA) guidelines and the Assessing Methodological Quality in Systematic Evaluation (AMSTAR) guidelines [15,16,17].The protocol for this review was registered in PROSPERO(CRD42024558825).
Search strategy
The search strategy used in this study was developed and refined by multiple authors. The MEDLINE, EMBASE, Scopus, PubMed, and Web of Science databases were searched from inception to December 2023. Key search terms and synonyms were searched separately in MESH using four main filters, which were then combined. These filters were: 1) Construct: quality of life OR health-related quality of life OR QoL OR HRQoL; 2) Target population: scoliosis OR adolescent scoliosis OR adolescent idiopathic scoliosis OR adult scoliosis OR adult idiopathic scoliosis OR adult degenerative scoliosis OR degenerative lumbar scoliosis OR spine deformity; 3) Measurement instrument: questionnaire/performance test/measure/instrument/assessment/index OR objective test/measure/assessment OR observational test/measure/assessment/index OR task performance and analysis; and 4) Measurement properties: instrument development OR psychometrics OR clinimetrics OR validity OR reliability OR responsiveness OR interpretability OR meaningful change. Finally, we searched the reference lists of related articles to identify additional potentially relevant literature.
Eligibility criteria
Retrieved studies initially underwent title and abstract screening to exclude irrelevant studies. The remaining studies were then subject to independent screening by two authors, followed by a full-text review of potentially eligible studies. Any disagreements were resolved through consensus or discussion with an experienced third author. In cases where multiple articles reported the same study results, only the original article was included unless subsequent articles contained new content or results. Studies were included if they were: quantitative studies, including randomized controlled studies and observational studies. Letters, editorials, and conference abstracts were excluded.
Participants
Individuals diagnosed with scoliosis (Cobb angle >10°; age was not limited).
Outcome measures
Any studies assessing HR-QoL and relevant PROMs among patients with scoliosis in China.
Language
Published literature in the English language.
Data extraction
Data were extracted using a standardized form that included the study sample size, average age of the target population, gender, country, language, and scale parameters. A COSMIN-recommended Excel file is available on the COSMIN website for documenting and determining the quality ratings for each study.
Missing data
If data were missing or data for patients with scoliosis were reported along with data for other conditions, we contacted the original authors to obtain the necessary information.
Evaluation of measurement properties of tools used in selected studies
The COSMIN scoring tool was used to assess the quality of the measured attributes reported in each study. Each measured attribute was assigned a separate rating (adequate, inadequate, uncertain). Depending on the number of measurement attributes assessed in a study, some studies underwent one quality assessment, whereas others studies underwent multiple quality assessments.
Evaluation of the methodological quality of selected studies
The methodological quality of the included studies was evaluated using the COSMIN checklist, which categorizes studies using four quality levels (poor, fair, good, and excellent). The total score for each property is determined by the lowest score. The results were independently assessed by two authors, and any discrepancies were resolved by discussion with a third experienced author.
Best evidence synthesis: Levels of evidence
In addition to assessing the level of evidence for each of the measured attributes in the instruments used in the selected studies, we integrated the best evidence for three aspects: 1) methodological quality as assessed by the COSMIN tool, 2) assessment of measured attribute results, and 3) the criteria established by Terwee et al. [18]. For all outcome measures, the results for each measured attribute were quantitatively summarized if there was sufficient clinical and methodological homogeneity. If there was a high degree of heterogeneity between studies, a qualitative summary was prepared.
Results
Description of included studies and performance-based measures
In total, 450 relevant papers were retrieved: 101 from MEDLINE, 99 from EMBASE, 94 from Scopus, 117 from PubMed, and 39 from the Web of Science. The research flow chart is shown below (Fig 1).
Fig 1. Study flowchart.
After screening, 155 published English language studies were included in our analysis. The trend for HR-QoL studies conducted in Chinese patients with scoliosis over the last 10 years is shown in Fig 2. A total of 47 instruments were identified, which were divided into five categories: general instruments (13 instruments), scoliosis-specific instruments (22 instruments), Specific body parts instruments (4 instruments), mental health instruments (6 instruments), and pain instruments (2 instruments). Of these, 9 instruments were used in both adult and adolescent patients with scoliosis, 32 instruments were only used for the adolescent population, and 6 instruments were only used for adults (Table 1).
Fig 2. Trend of published English language studies on health-related quality of life among patients with scoliosis in China over the last 10 years.
Table 1. Use and frequency of quality of life instruments for people living with scoliosis in China.
| Instrument | Frequency | Instrument | Frequency |
|---|---|---|---|
| Generic | |||
| SF-36 | 27 | SF-6D | 1 |
| SF-12 | 2 | TC-SF-12 | 1 |
| PEDSQL4.0:Pediatric Quality of Life Inventory | 3 | LSIZ:Life Satisfaction IndexZ | 2 |
| ICF:International Classification of Functioning | 1 | CHQ-PF50:Child Health Questionnaire-Parent Form-50 | 1 |
| C-CHU9D:Child Health Utility 9D | 1 | GCQ:General Comfort Questionnaire | 1 |
| COMI:Core Outcome Measures Index | 1 | PODCI:pediatric outcomes data collection instrument | 1 |
| MBQ:Modifed Baecke Physical Activity Questionnaire | 2 | ||
| Scoliosis Specific | |||
| C-SRS-22 | 78 | TC-SRS-22 | 1 |
| C-SRS-22r | 16 | SRS-20 | 1 |
| SRS-30 | 4 | C-BRQ | 6 |
| TC-EQ-5D-3L | 2 | TC-EQ-5D-5L | 11 |
| TC-EQ-5D-Y-3L | 7 | TC-EQ-5D-Y-5L | 7 |
| C-BSSQ-Brace | 1 | C-BSSQ-Deformity | 1 |
| C-EOSQ-24 | 2 | TC-EOSQ-24 | 1 |
| C-SAQ | 6 | TC-SAQ | 2 |
| C-ISYQOL | 2 | TC-ISYQOL | 1 |
| BIDQ-S:Body Image Disturbance Questionnaire -Scoliosis | 1 | QLPSD:quality of life profile for spine deformities | 2 |
| TAPS:Trunk Appearance Perception Scale | 2 | C-EOSQ-SELF | 1 |
| Specific body parts | |||
| ODI | 52 | JOA | 11 |
| LSDI:The Lumbar Stiffness Disability Index | 3 | RMDQ:Roland-Morris Disability Questionnaire | 5 |
| Psychosocial and mental health | |||
| BDI-II:Beck Depression Inventory-II | 1 | DASS:Depression and Stress Scale | 1 |
| SES:self-esteem scale | 1 | STAI:State Trait Anxiety Inventory | 1 |
| GAD-7:Generalized Anxiexy Disorde-7 | 2 | PHQ-9:Patient Health Questionnaire-9 items | 1 |
| Pain | |||
| VAS | 43 | NPRS | 2 |
Three of the 47 identified instruments were used 40 times or more, and 4 instruments were used more than 20 times. The top five most frequently used instruments were: 1) C-SRS-22, 2) ODI, 3) VAS, 4) SF-36, and 5) C-SRS-22r. These five instruments were used 216 times, accounting for 66.6% of the instrument use. The distribution of instruments used more than 10 times in adults and adolescents with scoliosis is shown in Fig 3.
Fig 3. Frequency of use and population distribution of health-related quality of life instruments used in Chinese scoliosis studies.
The overall assessment content was divided into seven key domains: physical status, perceived appearance, social functioning, psychosocial and mental health, disease status, treatment satisfaction, and economic status. In the 47 identified instruments, physical status was assessed by physical functioning and mobility (e.g., patients’ tolerance of stairs and strenuous exercise). However, scoring criteria varied, with 2 instruments assessing sexuality and 11 instruments considering sleep or rest. 17 instruments assessed patients’ perceptions of their self-appearance, of which 4 were scoliosis appearance-specific instruments. 25 instruments included assessment of social functioning, such as family relationships, work or study, socialization, and recreational activities. 31 instruments assessed psychosocial and mental health, primarily anxiety, depression, stress, and well-being. Disease status evaluation included assessment of pain, surgery, and degree of scoliosis, with 28 instruments assessing pain (including two pain-specific instruments), in addition to 3 instruments that assessed patients’ postoperative situation, and 2 instruments that assessed scoliosis severity (degree of scoliosis expressed by images of the different degrees of deformity versus the patient’s textual representations of their expectations of the appearance). 7 instruments identified financial burden as an important factor that affected patients’ HR-QoL (see Table 2 for details).
Table 2. Assessment content of the generic instruments, scoliosis-specific instruments, and instruments focused on specific body parts.
| Physical condition | appearance | Social function | Mental health | Disease | Treatment satisfaction | Economic | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Instrument | General state of health | Body function/motor function | Sex | Sleep/rest | / | Family relationship | Social interaction | Work/study | recreation | Depression/anxiety/stress | happiness | Degree of scoliosis | Pain | operation | / | / |
| C-SRS-22/TC-SRS-22 | – | + | – | – | + | – | + | + | + | + | + | – | + | – | + | + |
| SRS-20 | – | + | – | – | + | – | – | – | – | + | + | – | + | – | + | – |
| SRS-30 | + | + | – | – | + | – | + | + | + | + | + | – | + | + | + | + |
| C-SRS-22r | – | + | – | – | + | – | + | + | + | + | + | – | + | – | + | + |
| ODI | – | + | + | + | – | – | + | – | + | – | – | – | + | – | – | – |
| JOA | – | + | – | + | – | – | – | + | – | – | – | – | + | – | – | – |
| SF-36 | + | + | – | – | – | – | + | + | – | + | + | – | + | – | – | – |
| C-SF-12/TC-SF-12 | + | + | – | – | – | – | + | + | – | + | + | – | – | – | – | – |
| SF-6D | + | + | – | – | – | – | + | + | – | + | – | – | + | – | – | – |
| C-EOSQ-24/TC-EOSQ-24 | + | + | – | – | – | – | – | – | – | + | – | – | + | – | + | + |
| C-EOSQ-SELF | + | + | – | + | + | + | + | + | + | + | + | – | + | – | – | – |
| CHQ-PF50 | + | + | – | – | – | + | – | – | – | + | + | – | + | – | – | – |
| ICF | + | + | – | + | + | + | + | + | + | + | + | – | + | – | + | + |
| LSIZ | – | – | – | + | – | – | – | + | – | + | + | – | – | – | – | – |
| TC-EQ-5D(3L/5L) | + | + | – | – | – | – | – | – | – | + | – | – | + | – | – | – |
| TC-EQ-5D-Y(3L/5L) | + | + | – | – | – | – | – | – | – | + | – | – | + | – | – | – |
| C-SAQ/TC-ASQ | – | – | – | – | + | – | – | – | – | – | – | + | – | + | – | – |
| LSDI | – | + | + | – | – | – | – | – | – | – | – | – | – | – | – | – |
| RMDQ | – | + | – | + | – | – | – | – | – | + | – | – | + | – | – | – |
| PEDSQL4.0 | – | + | – | – | – | – | + | + | + | + | – | – | – | – | – | – |
| C-BSSQ-Brace | – | – | – | – | + | – | + | – | + | + | – | – | – | – | – | – |
| C-BSSQ-Deformity | – | – | – | – | – | – | + | – | + | + | + | – | – | – | – | – |
| C-BIDQ-S | – | + | – | – | + | – | + | + | + | + | + | – | + | – | + | – |
| COMI | + | + | – | – | – | – | + | + | + | – | – | – | + | – | – | – |
| C-ISYQOL/TC-ISYQOL | + | + | – | – | + | – | – | – | – | + | + | – | + | – | – | – |
| C-QLPSD | – | + | – | + | + | – | + | – | + | + | – | – | + | – | – | – |
| C-BRQ | + | + | – | + | + | + | + | + | + | + | + | – | + | – | + | – |
| C-CHU9D | – | + | – | + | – | – | – | + | – | + | – | – | + | – | – | – |
| TAPS | – | – | – | – | + | – | – | – | – | – | – | – | – | – | – | – |
| GCQ | + | + | – | + | – | + | + | – | – | + | + | – | + | – | – | – |
| MBQ | + | + | – | + | – | – | – | + | + | – | – | – | – | – | – | – |
| PODCI | + | + | – | – | + | – | – | – | + | – | + | – | + | – | + | – |
Measurement properties
Internal consistency
Twenty studies assessed the internal consistency of 12 instruments (see Table 3 for details). Five of these studies reported the internal consistency of the C-SRS-22 [11,19–22], one study gave sufficient evidence (Cronbach’s α = 0.70–0.88), and the remaining four studies did not find statistically significant internal consistency (Cronbach’s α = 0.44–0.89). The internal consistency of the C-ISYQOL and TC-ISYQOL were assessed by one study each, with sufficient evidence (Cronbach’s α = 0.75–0.90) [23,24]. One study used Spearman’s correlation analyses to assess the internal consistency of the C-SAQ [25], and therefore the evidence was unable to be assessed using the COSMIN methodology. One study reported sufficient evidence of internal consistency for the C-BIDQ-S (Cronbach’s α > 0.80) [26]. The internal consistency of the C-EOSQ-SELF [27]was assessed by one study, but the exact values for each subscale were not reported, meaning the adequacy of the evidence could not be assessed. Two studies provided sufficient evidence of internal consistency for the C-QLPSD (Cronbach’s α = 0.75–0.917) [28,29]. The adequacy of internal consistency evidence for C-CHU9D [30] could not be evaluated as precise values were not provided in the study conclusions. The results of the studies evaluating internal consistency for the remaining instruments showed insufficient or conflicting evidence.
Table 3. Measurement properties of performance-based measures: Internal consistency.
| Instrument | References | Patients | Measurement | Results | Quality | COSMIN |
|---|---|---|---|---|---|---|
| C-SRS-22 | Li M, Wang CF,et al. [11] | 87 | Cronbach’s α | Function/activity subscale(0.81), pain subscale(0.88),Self-image subscale(0.76),Mental health subscale(0.79),Satisfaction subscale (0.65) | – | Fair |
| Cheung KM, Senkoylu A, et al. [19] | 50 | Cronbach’s α | Function/activity、pain and Mental health subscale(0.80–0.89), Self-image and Satisfaction subscale (0.50–0.79) | – | Fair | |
| Zhao L, Zhang Y, et al. [20] | 86 | Cronbach’s α | Function/activity subscale(0.70), pain subscale(0.80),Mental health subscale(0.88),Self-image subscale (0.80),Satisfaction subscale(0.81) | + | Fair | |
| Xie J J, Liu Z D [21] | 38 | Cronbach’s α | Function/activity、pain、Mental health、Self-image subscale all exceeded 0.70,0.44 for Satisfaction subscale | – | Fair | |
| Qiu G, Qiu Y, et al. [22] | 333 | Cronbach’s α | Function/activity subscale(0.57), pain subscale(0.73),Self-image subscale (0.71),Mental health subscale(0.79),Satisfaction subscale (0.50) | – | Excellent | |
| C-ISYQOL | Liu S, Liang J, et al. [23] | 138 | Cronbach’s α | 0.75 for Untreated group,0.88 for Treatment group | + | Excellent |
| TC-ISYQOL | Cheng AY, Jim PK, et al. [24] | 133 | Cronbach’s α | Spinal health subscale(0.89),brace subscale(0.79),Cronbach α of 0.89 and 0.90 for participants who answered 20 items and 13 items | + | Fair |
| C-SAQ | Wei X, Zhu X, et al. [25] | 92 | Spearman | intradomain correlations ranging from r = 0.526 to r = 0.808 (P, 0.0001) | / | Fair |
| C-BIDQ-S | Bao H, Yan P, et al. [26] | 100 | Cronbach’s α | exceeded 0.80 in all subscales | + | Excellent |
| C-EOSQ-SELF | Yang H, Liu L, et al. [27] | 101 | Cronbach’s α and McDonald ω | Cronbach α = 0.942,McDonald ω= 0.940 for all subscales | / | Excellent |
| C-QLPSD | Hou X, Liu S, et al. [28] | 172 | Cronbach’s α | Cronbach α of all subscales (0.803–0.888),0.917 for whole instrument | + | Fair |
| Hu M, Cai Z, et al. [29] | 129 | Cronbach’s α | Cronbach’s α exceed than 0.75 in all subscales,0.914 for whole instrument | + | Fair | |
| C-CHU9D | Yang P, ChenG, et al. [30] | 1912 | Cronbach’s α | 0.77 for whole instrument | / | Fair |
| C-BrQ | Liu S, Zhou G, et al. [31] | 70 | Cronbach’s α | General health perception subscales (0.399),physical function subscales (0.689),Emotional subscales (0.611),Self-esteem and aesthetics subscales(0.791),Vitality subscales (0.646),School activity subscales (0.667),Bodily pain subscales (0.871),Social functioning subscales (0.672) | – | Fair |
| Yi H, Chen H, et al. [32] | 79 | Cronbach’s α | General health perception subscales (0.739),physical function subscales (0.793), Emotional subscales (0.668),Self-esteem and aesthetics subscales (0.812),Vitality subscales (0.677),School activity subscales (0.659),Bodily pain subscales (0.850),Social functioning subscales (0.705) | – | Fair | |
| Zhang X, Wang D, et al. [39] | 208 | Cronbach’s α | General health perception、Emotional subscales、Vitality、School activity、Bodily pain and Social functioning subscales(0.70–0.79), physical function、Self-esteem and aesthetics subscales (0.83–0.85) | + | Fair | |
| TC-SAQ | Guo J, Lau AH, et al. [33] | 112 | Cronbach’s α | General subscale(0.665),shoulder subscale(0.421),Remaining subscale (0.785–0.940) | – | Fair |
| C-EOSQ-24 | Gao R, Sun B, et al. [34] | 38 | Cronbach’s α | Cronbach’s α exceed than 0.7 in 7 of the 11subscales | – | Excellent |
| Li Z, Yue Y, et al. [41] | 63 | Cronbach’s α | 0.950 for 24 subscales,0.927for 11 subscales | + | Good | |
| TC-EOSQ-24 | Cheung JPY, Cheung PWH, et al. [40] | 100 | Cronbach’s α | Quality of life, family burden and satisfaction subscale(0.829–0.919), all subdomains(0.589–0.930) | – | Fair |
Rating of each measurement property quality using the COSMIN criteria where “+” is positive, “?” is indeterminate, and “−” is negative.
Reliability
Twenty-one studies assessed the reliability of 13 instruments (see Table 4 for details). Five studies showed fairly high reliability (intraclass correlation coefficient [ICC] = 0.74–0.96) for the C-SRS-22 [11,19–22]. There was sufficient evidence of retest reliability for the C-ISYQOL and TC-ISYQOL (one study each) [23,24]. Accurate ICC values for each subscale of the C-SAQ [25] were not reported, and therefore reliability was not rated. Evidence for the retest reliability of the C-QLPSD (ICC = 0.722–0.896, 0.784–0.919) and C-BrQ (ICC = 0.807–0.967, 0.809–0.923) was sufficient [28,29,31,32]. There was good evidence of retest reliability for the C-EOSQ-SELF (ICC = 0.818–0.924) [27], TC-SAQ (ICC > 0.798) [33] and C-EOSQ-24 (ICC = 0.681–0.945) [34] (one study each). None of the studies showed good evidence of retest reliability for the TC-EQ-5D-5L or TC-EQ-5D-Y-5L/3L [35–37]. ICC values for COMI [38] subscales were unreported, precluding reliability assessment.
Table 4. Measurement properties of performance-based measures: Reliability.
| Instrument | References | Patients | Interval | Design | Measurement | Results | Quality | COSMIN |
|---|---|---|---|---|---|---|---|---|
| C-SRS-22 | Li M, Wang CF,et al. [11] | 63 | 8-26 days | Test-retest analysis | ICCs | Function/activity subscale (0.74),pain subscale(0.78), Mental health subscale (0.81),Self-image subscale (0.86),Satisfaction subscale (0.84) | + | Good |
| Cheung KM, Senkoylu A,et al. [19] | 86 | 2-15 days | Test-retest analysis | ICCs | Function/activity subscale (0.83),pain subscale(0.76), Mental health subscale (0.84),Self-image subscale (0.79),Satisfaction subscale (0.82) | + | Good | |
| Zhao L, Zhang Y,et al. [20] | 30 | 21-28 days | Test-retest analysis | ICCs | Function/activity subscale (0.85),pain subscale(0.96), Mental health subscale (0.95),Self-image subscale (0.96),Satisfaction subscale (0.91) | + | Fair | |
| Xie J J, Liu Z D [21] | 38 | 8-18 days | Test-retest analysis | ICCs | Function/activity subscale (0.74),pain subscale(0.78), Mental health subscale (0.81),Self-image subscale (0.86),Satisfaction subscale (0.84) | + | Fair | |
| Qiu G, Qiu Y, et al. [22] | 84 | 8-21 days | Test-retest analysis | ICCs | Function/activity subscale (0.78),pain subscale(0.70), Mental health subscale (0.82),Self-image subscale (0.85),Satisfaction subscale (0.75) | + | Good | |
| C-ISYQOL | Liu S, Liang J, et al. [23] | 70 | 14 days | Test-retest analysis | ICCs | Untreated group(0.72), Brace treatment group (0.80) | + | Good |
| TC-ISYQOL | Cheng AY, Jim PK, et al. [24] | 133 | 14 days | Test-retest analysis | ICCs | All subscales(0.95–0.96) | + | Fair |
| C-SAQ | Wei X, Zhu X, et al. [25] | 92 | 4-7days | Test-retest analysis | ICCs | 0.933for whole instrument | / | Fair |
| C-EOSQ-SELF | Yang H, Liu L, et al. [27] | 101 | 14 days | Test-retest analysis | ICCs | All subscales(0.818–0.924) | + | Fair |
| C-QLPSD | Hou X, Liu S, et al. [28] | 69 | 14 days | Test-retest analysis | ICCs | All subscales(0.722–0.896) | + | Good |
| Hu M, Cai Z, et al. [29] | 129 | 7-14 days | Test-retest analysis | ICCs | All subscales(0.784–0.919) | + | Good | |
| C-BrQ | Liu S, Zhou G, et al. [31] | 70 | 14 days | Test-retest analysis | ICCs | All subscales(0.807–0.967) | + | Good |
| Yi H, Chen H, et al. [32] | 72 | 7-12 days | Test-retest analysis | ICCs | All subscales(0.809–0.923) | + | Good | |
| TC-SAQ | Guo J, Lau AH, et al. [33] | 112 | 14 days | Test-retest analysis | ICCs | ICCs exceed than 0.798 in all subscales | + | Excellent |
| C-EOSQ-24 | Gao R, Sun B, et al. [34] | 38 | 14 days | Test-retest analysis | ICCs | 0.681 for fatigue and energy levels subscale, ICCs exceed than 0.790 in other subscales | + | Fair |
| TC- EQ-5D-5L | Cheung PWH, Wong CKH, et al. [35] | 106 | 15-36 days | Test-retest analysis | ICCs | Weighted Kappa Less than 0.70 in all subscales | _ | Fair |
| TC- EQ-5D-Y-5L | Lin J, Wong CKH, et al. [36] | 129 | 118 days | Test-retest analysis | ICCs, GAC, PA | ICCs Less than 0.40 in EQ-VAS subscale | / | Good |
| Wong CKH, Cheung PWH, et al. [37] | 110 | 90 days | Test- retest analysis | Gwet | / | / | Poor | |
| TC- EQ-5D-Y-3L | Lin J, Wong CKH, et al. [36] | 129 | 118 days | Test-retest analysis | ICCs, GAC, PA | ICCs Less than 0.40 in EQ-VAS subscale | / | Good |
| Wong CKH, Cheung PWH, et al. [37] | 110 | 90 days | Test-retest analysis | Gwet | / | / | Poor | |
| COMI | Qiao J, Zhu F, et al. [38] | 120 | 30 days | Test-retest analysis | ICCs | 0.91for whole instrument,Pain subscale of back and legs(0.81–0.86) | / | Good |
ICC, intraclass correlation coefficient. Rating of each measurement property quality using the COSMIN criteria where “+” is positive, “?” is indeterminate, and “−” is negative.
Validity
Thirteen studies assessed the construct validity of nine instruments (see Table 5 for details). The structural validity of the C-SRS-22 was poor, with only one of the five studies rating the measurement properties as good [11,19–22]. The remaining eight instruments had good construct validity, but each was only supported by one study [23,24,29,33,35,38–40]. There were no studies assessing criterion validity,cross-cultural validity, or hypothesis testing.
Table 5. Measurement properties of performance-based measures: structural validity.
| Instrument | References | Patients | Design | Result | Correlation | Quality | COSMIN |
|---|---|---|---|---|---|---|---|
| C-SRS-22 | Li M, Wang CF et al. [11] | 63 | Pearson’s correlation | Function/activity subscale (0.38–0.76),pain subscale (0.30–0.81),Mental health subscale(0.32–0.85),Self-image subscale(0.17–0.51), Satisfaction subscale(0.16-0.32) |
SF-36 | _ | Fair |
| Cheung KM, Senkoylu A,et al. [19] | 50 | Pearson’s correlation | Function/activity subscale (0.59–0.77),pain subscale (0.54–0.72),Mental health subscale(0.57–0.67),Self-image subscale(0.50–0.62), Satisfaction subscale(0.25-0.49) |
SF-36 | _ | Fair | |
| Zhao L, Zhang Y, et al. [20] | 86 | CFA | Function/activity subscale (0.416–0.819),pain subscale (0.707–0.794),Mental health subscale(0.616–0.813),Self-image subscale(0.762–0.892),Satisfaction subscale (0.917) | / | + | Fair | |
| Xie J J, Liu Z D [21] | 38 | Pearson’s correlation | Function/activity subscale (0.328–0.576),pain subscale (0.166–0.665),Mental health subscale(0.011–0.553),Self-image subscale(0.018–0.553),Satisfaction subscale(0.164−0.367) | SF-36 | _ | Fair | |
| Qiu G, Qiu Y, et al. [22] | 333 | Pearson’s correlation | Function/activity subscale (0.42–0.70),pain subscale (0.30–0.52),Mental health subscale(0.36–0.62),Self-image subscale(0.22–0.63), Satisfaction subscale(0.16-0.32) | SF-36 | _ | Fair | |
| C-ISYQOL | Liu S, Liang J, et al. [23] | 138 | Pearson’s correlation | r = 0.59–0.72 | C-SRS-22 | + | Fair |
| TC-ISYQOL | Cheng AY, Jim PK, et al. [24] | 133 | Rasch | total variance = 45.9%, eigenvalue = 17 | / | + | Good |
| C-QLPSD | Hu M, Cai Z, et al. [29] | 129 | Pearson’s correlation | r(C-SRS-22)=−0.924, r(SF-36)=−0.871 | SF-36 C-SRS-22 | + | Fair |
| TC-SAQ | Guo J, Lau AH, et al. [33] | 101 | Pearson’s correlation | r = 0.820–0.954 | E-SAQ | + | Fair |
| TC-EQ-5D-5L | Cheung PWH, Wong CKH, et al. [35] | 227 | Spearman’s correlation | Function/activity subscale (0.72),pain subscale(0.59), Mental health subscale (0.57),Self- image subscale (0.51),Satisfaction subscale (−0.14) | C-SRS-22r | + | Excellent |
| COMI | Qiao J, Zhu F, et al. [38] | 120 | Spearman’s correlation | r(VAS)=0.89, r(SF-36)=−0.59–0.84, r(ODI)=0.45–0.72, r(RMQ)=0.31–0.62 | ODI、RMQ VAS、SF-36 | + | Fair |
| C-BrQ | Zhang X, Wang D, et al. [39] | 208 | Pearson’s correlation | r = 0.51–0.83 | C-SRS-22 | + | Fair |
| TC-EOSQ-24 | Cheung JPY, Cheung PWH, et al. [40] | 100 | Pearson’s correlation | Quality of life subscale (0.312–0.716),Family burden subscale (0.349−0.725),Satisfaction subscale(0.306–0.702) | C-CHQ-PF D-50 | + | Fair |
CFA, confirmatory factor analysis. Rating of each measurement property quality using the COSMIN criteria where “+” is positive, “?” is indeterminate, and “−” is negative.
Floor and ceiling effects
A total of 14 studies assessed the floor and ceiling effects of nine instruments (see Table 6 for details). All C-SRS-22 subscales had varying degrees of ceiling effects [20,22], with these effects ranging from 2.3% to 67.5%. Similar high ceiling effects were observed for the C-BrQ [31,32,39], TC-EQ-5D-Y-3L/5L [36,37,42], TC-EOSQ-24 [40] and C-EOSQ-24 [41]. Floor effects were observed in four of the five C-QLPSD subscales (20.0%–45.7%) [28–29].
Table 6. Measurement properties of performance-based measures: responsiveness, floor, and ceiling effects.
| Responsiveness | Floor and ceiling effects | ||||||||
|---|---|---|---|---|---|---|---|---|---|
| Instrument | References | Patient | Measurement | Result | Quality | COSMIN | Type | Result | Quality |
| C-SRS-22 | Zhao L, Zhang Y, et al. [20] | 86 | / | / | / | / | floor/ ceiling | 2.3%−15.1%/2.3%−7.0% | + |
| Qiu G, Qiu Y, et al. [22] | 333 | / | / | / | / | floor/ ceiling | 14.0%−67.5%/1.2%−5.9% | _ | |
| C-EOSQ-SELF | Yang H, Liu L, et al. [27] | 101 | / | / | / | / | floor/ ceiling | 0%−52.48%/0%−7.92% | _ |
| C-QLPSD | Hou X, Liu S, et al. [28] | 172 | / | / | / | / | floor/ ceiling | 0%−28.6%/20%−45.7% | _ |
| Hu M, Cai Z, et al. [29] | 129 | / | / | / | / | floor/ ceiling | 0%−4.65%/0%−0.78% | + | |
| C-BrQ | Liu S, Zhou G, et al. [31] | 70 | / | / | / | / | floor/ ceiling | 0%−45.7%/0%−10% | _ |
| Yi H, Chen H, et al. [32] | 79 | / | / | / | / | floor/ ceiling | 2.5%−39.2%/0%−12.7% | _ | |
| Zhang X, Wang D, et al. [39] | 217 | / | / | / | / | floor/ ceiling | 0.76%−40.76%/0% | _ | |
| TC-EQ-5D-5L | Cheung PWH, Wong CKH, et al. [35] | 176 | SES、SRM | health worsened subgroup: SES(−0.71),SRM(−0.40);unchanged group:SES (−0.06),SRM(−0.05); health improved subgroup:SES(0.25), SRM(0.23) | + | Fair | / | / | / |
| TC-EQ-5D-Y-3L/5L | Lin J, Wong CKH, et al. [36] | 130 | / | / | / | / | ceiling | Y-5L:62.8%−97.7%; Y-3L:62.0%-96.9% | _ |
| Wong CKH, Cheung PWH, et al. [37] | 129 | ROC Curve- analysis | AUC = 0.70,95% CI (0.43–0.97) | + | Fair | floor/ ceiling | floor:0%, Ceiling of Y-5L: 58.6%, ceiling of Y-3L:61.2% | _ | |
| Pei W, Yue S, et al. [42] | 262 | / | / | / | / | ceiling | Ceiling of Y-5L:40.3%, ceiling of Y-3L:44.1% | _ | |
| COMI | Qiao J, Zhu F, et al. [38] | 120 | / | / | / | / | floor/ ceiling | 0%−24.2%/5.8%−28.3% | + |
| TC-EOSQ-24 | Cheung JPY, Cheung PWH, et al. [40] | 100 | / | / | / | / | floor/ ceiling | 0%−71.0%/0%−26.0% | _ |
| C-EOSQ-24 | Li Z, Yue Y, et al. [41] | 63 | / | / | / | / | floor/ ceiling | 0%−88.9%/0%−3.2% | _ |
Rating of each measurement property’s quality using the COSMIN criteria, where “+” is positive, “?” is indeterminate, and “−” is negative.
Responsiveness
Responsiveness was assessed in two studies using SES, SRM (TC-EQ-5D-5L), and receiver operating curve analysis (TC-EQ-5D-Y-5L/3L) (see Table 6 for details). The TC-EQ-5D-5L was responsive to detecting negative changes in the deteriorating health subgroup and mildly responsive in the improving health subgroup, despite a mean score of 0.92 at baseline and a non-significant mean change in the unchanged group [35]. The TC-EQ-5D-Y-3L/5L responded to both “worsening” and “improving” health changes. and to “no change” in health status or treatment modalities. The mean change in the TC-EQ-5D-Y-3L/5L from baseline to a 3-month follow-up was not significant, with an area under the curve of 0.70 and a 95% confidence interval of 0.43–0.97 [37].
Methodological evaluation of measurement properties
Based on the COSMIN criteria, one study focused on the C-ISYQOL showed the best results [23], with the methodological quality of the measurement properties ranging from excellent to fair. One study focused on the TC-ISYQOL and two studies on the C-QLPSD showed a good or fair methodological quality of measurement properties [24,28,29]. The methodological quality of the measurement properties of the C-SRS-22 ranged from excellent to fair [11,19–22].
Best evidence synthesis
The overall level of evidence for the 18 instruments is summarized in Table 7. In terms of internal consistency, the quality of evidence was strong for the C-ISYQOL and C-BIDQ-S. In terms of reliability, the TC-SAQ had a strong level, whereas the C-SRS-22, C-ISYQOL, C-BrQ, and C-QLPSD had a moderate level. The TC-EQ-5D-5L had good performance both in terms of construct validity and responsiveness.
Table 7. Summary of measurement properties.
| Instrument | Internal consistency | Reliability | construct validity | Responsiveness |
|---|---|---|---|---|
| C-SRS-22 | + | ++ | + | / |
| C-ISYQOL | +++ | ++ | + | / |
| TC-ISYQOL | + | + | + | / |
| C-SAQ | / | / | / | / |
| TC-SAQ | _ | +++ | + | / |
| C-BSSQ-Brace | / | / | / | / |
| C-BSSQ-Deformity | / | / | / | / |
| C-BIDQ-S | +++ | / | / | / |
| TC-EOSQ-24 | _ | / | + | / |
| C-EOSQ-24 | +/- | + | / | / |
| C-EOSQ-SELF | / | + | / | / |
| C-BrQ | +/- | ++ | + | / |
| C-QLPSD | ++ | ++ | + | / |
| C-CHU9D | / | / | / | / |
| TC-EQ-5D-5L | / | _ | +++ | + |
| TC-EQ-5D-Y-5L | / | / | / | + |
| TC-EQ-5D-Y-3L | / | / | / | + |
| COMI | / | / | + | / |
| C-EOSQ-SELF | / | + | / | / |
Note: +++ Consistent positive evaluation results in multiple studies of “good” methodological quality, or in one study of “excellent” methodological quality; ++ Consistently positive ratings across multiple studies of “fair” methodological quality or one study of “good” methodological quality; + positive results were obtained in a study of “fair” methodological quality; + /- conflicting results;? only studies with “poor” methodological quality; − a study with “fair” methodological quality was negative.
Discussion
The impact of scoliosis on patients’ HR-QoL is significant. Currently, there is no high-level evidence to support any treatment that can prevent adolescent scoliosis from progressing into adulthood or improve patients’ long-term HR-QoL. Scoliosis in adolescents is likely to progress with age, and treatment aims to reverse, prevent, or limit further progression to prevent or reduce symptoms. Braces are the most common conservative treatment for patients with mild-to-moderate malformations, and surgical intervention is required when the Cobb angle exceeds 40° [43]. In addition to affecting normal physiological activities and appearance, there is a significant correlation between adolescent scoliosis and mental health problems such as depression and anxiety [44].
Adult scoliosis differs from adolescent scoliosis in that the main reason for seeking medical treatment is not appearance deformity, but rather the pain and dysfunction caused by the condition. Treatment for these patients focuses on addressing pain and dysfunction to improve their quality of life. Non-surgical treatments (e.g., physical therapy, hot compresses, stretching, and aerobic exercise) are initially considered first-line treatment, particularly for those with mild baseline disease (as scored using the SRS-22) [45]. HR-QoL is an important indicator for assessing treatment outcomes among patients that opt for surgery. In the last decade there has been a dramatic shift in the philosophy of both doctors and patients regarding the treatment of adult scoliosis, with an increase in the number of individuals opting for surgical treatment; however, surgical complications occur at a rate of up to 40% and affect nearly 70% of patients [46,47]. Such complications result in significant deterioration in health-related quality of survival. Recent studies have shown that 27%–38% of adult patients with scoliosis have comorbid mental health disorders (e.g., concomitant depression, sleep, anxiety, and stress disorders), and are more likely to experience surgical complications and revision for at least 2 years after surgery [48,49].
The current status of HR-QoL instruments used to evaluate patients with scoliosis in China is not clearly defined because many different instruments are available for this purpose. In this study, we identified commonly used HR-QoL instruments and the frequency of use of these tools in Chinese patients with scoliosis based on published English literature. We also evaluated the measurement properties of these instruments using the COSMIN approach. In total, 47 instruments were identified, among which the C-SRS-22, ODI, VAS, SF-36, and C-SRS-22r were most frequently used. However, most instruments had limited frequency and application range or insufficient quality of evidence of good measurement properties. For example, although the C-ISYQOL had good measurement properties based on one high-quality study, this may not be sufficient to recommend it as a preferred instrument for clinical measurement because of a lack of supporting evidence. Furthermore, as research on the C-ISYQOL increases, its measurement properties may be downgraded in further studies. The widely used SF-36 lacks specificity for patients with scoliosis and takes too long to evaluate because of repeated questions. Currently, the SRS strongly recommends using the SRS-22 and SRS-22r globally for evaluating HR-QoL among patients with scoliosis. The measurement properties of the SRS-22 have been evaluated in Spain, Italy, Turkey, and other countries and regions, and the results showed that it has good reliability and validity for evaluating HR-QoL in patients with scoliosis. The results of this study also showed that the C-SRS-22 had good properties in the measurement of HR-QoL in Chinese adolescent patients with scoliosis.
It is worth noting that the measurement properties of the abovementioned instruments were all examined in adolescent populations, and no studies were found that assessed measurement instruments in adult patients with scoliosis. This was consistent with international findings. For example, Archer [50] conducted a systematic review of the literature published in English that assessed HR-QoL in adult scoliosis, but did not include any studies published in Chinese and conducted in China showed that there was insufficient evidence for the measurement properties of any HR-QoL outcome measures in adult scoliosis. The HR-QoL outcome domains in adult patients with scoliosis using the C-SRS-22 may differ compared with those in adolescent scoliosis. There was also a lack of assessment of the content validity of C-SRS-22 in adult scoliosis, which is the most important measurement property for determining the suitability of a measurement instrument for clinical application. Further studies are urgently needed to assess the measurement properties of HR-QoL instruments in adult scoliosis populations.
The findings of this systematic review indicate that the current clinical assessment instruments for HR-QoL in Chinese scoliosis patients present a landscape dominated by generic instruments, with delayed development of disease-specific measures. The C-SRS-22, ODI, VAS, SF-36, and JOA scores constitute the primary evaluation system in clinical research. This situation reflects two underlying issues: First, the localization process of scoliosis-specific assessment instruments in Chinese lags significantly. Apart from the SRS-22, internationally recognized instruments such as the Quality of Life Profile for Spine Deformities (QLPSD) and Brace Questionnaire have not yet established validated Chinese versions. Second, there is an overemphasis on pain and functional disability dimensions, with predominant use of ODI and VAS combinations, potentially underestimating patients’ specific needs in multidimensional health domains such as social participation and psychological well-being. Additionally, the validation populations for these instruments’ measurement properties demonstrate significant age bias, which starkly contrasts with China’s epidemiological trend of continuously rising prevalence of adult degenerative scoliosis (ADS).
Based on the differentiated evaluation needs of clinical treatment approaches, conservative treatment emphasizes process monitoring and requires high-sensitivity measurement instruments, while surgical treatment prioritizes outcome evaluation and demands multidimensional and specific scales. For adult spinal deformity management, it is essential to integrate degeneration-related indicators. Current strategies for selecting assessment instruments, tailored to treatment modalities, can be established as follows:
-
a
Conservative Treatment (Bracing/Rehabilitation) Recommended Combination: It is recommended to adopt an evaluation model combining the C-ISYQOL with dynamic VAS scores. This study found that, under the COSMIN criteria, the C-ISYQOL demonstrates superior overall measurement properties—including internal consistency, reliability, and structural validity—compared to the C-SRS-22. Its unique dimensions, such as “Treatment Compliance Distress” (Item 15) and “Dynamic Body Image Perception” (Items 7–9), effectively capture critical turning points during brace therapy. Additionally, dynamic VAS scoring is recommended every 3 months as a sensitivity supplement.
-
b
Surgical Treatment (Fusion/Non-fusion) Recommended Combination: A three-tiered assessment system combining the C-SRS-22, ODI scores, and SF-36 scores is proposed. The SRS-22 questionnaire is endorsed by international scoliosis research consortia (e.g., SRS, ESSG) as the standard postoperative follow-up instrument, with no other scoliosis-specific scale currently addressing the postoperative evaluation needs of both adolescent and adult populations. The ODI should focus on pain-related dysfunction during the critical recovery period (6 weeks to 3 months postoperatively) [51], while the SF-36 serves as a long-term follow-up supplement (≥1 year), particularly for evaluating the impact of adjacent segment degeneration on overall health.
-
c
Adult Spinal Deformity Management Strategy: There is an urgent need to develop composite scales integrating degeneration-specific metrics. Existing instruments exhibit significant “dimensional gaps” in assessing HRQoL in adult scoliosis patients. For instance, the C-SRS-22 lacks specificity for degenerative spinal symptoms (e.g., radicular pain, neurological deficits, spinal stenosis) and prioritizes daily activities (e.g., dressing, lifting) over critical adult-specific concerns such as gait stability, fall risk, prolonged standing/walking capacity, and comorbidities (e.g., osteoporosis, arthritis). While the ODI overemphasizes low back pain, the Core Outcome Measures Index (COMI)—validated for lumbar degenerative conditions and adopted by EuroSpine’s Spine Tango registry—is recommended as a transitional short-term solution [52].
In addition, further research should explicitly address the mental health of adolescents and adults with scoliosis, including epidemiological studies, systematic evaluations based on big data, and use of specific measurement instruments. Psychosocial interviews and randomized clinical trials should be conducted to assess the effectiveness of psychoeducational and psychotherapeutic interventions for patients suffering psychological distress because of scoliosis. Psychological interventions should form an integral part of the overall treatment program for patients with scoliosis to meet the growing need for psychosocial support for these patients and reduce the social burden of developing mental health problems.
The strength of this systematic evaluation was that it was the first study to assess the methodological quality of and psychometric evidence for HR-QoL measurement instruments in Chinese patients with scoliosis based on the COSMIN criteria, which provides useful evidence for selecting appropriate HR-QoL clinical measurement instruments for Chinese patients with scoliosis. However, the results of this systematic evaluation were limited by the fact that only published literature was searched. Data from unpublished studies were not included in the analyses, although the number of excluded studies was much smaller than the included studies. However, a small amount of missing data could lead to potential publication bias and undermine the validity of the findings. In addition, methodological flaws in the COSMIN methodology may have had a slight effect on the results.
Conclusion
The C-SRS-22, ODI, VAS, SF-36, and C-SRS-22r are the most commonly used HR-QoL measurement instruments for Chinese patients with scoliosis in the English language literature published to date. Of these, only the C-SRS-22 has been fully evaluated in terms of its measurement properties. Although the C-SRS-22 is a scoliosis-specific HR-QoL instrument, its measurement properties have not been validated in an adult scoliosis population. Among the studies included for COSMIN methodological assessment, the measurement properties of the C-ISYQOL showed the best results, but its generalized use cannot currently be fully supported because only one high-quality study was available. From the perspective of methodological quality, it is difficult to identify a suitable instrument, and further multicenter studies are needed to develop a HR-QoL instrument suitable for Chinese patients with scoliosis based on the Chinese national and cultural context.
Provenance and peer review: Not commissioned, externally peer-reviewed.
Supporting information
(PDF)
Data Availability
All relevant data are available in the manuscript and its supporting information files. The first part of this study, titled "Selection and Frequency of Use of Health-Related Quality of Life Measurement Scales for Scoliosis Patients in China," has its detailed raw data archived in the public repository Dryad Digital Repository: https://doi.org/10.5061/dryad.qrfj6q5sk. The second part of this study, "Measurement Properties of Health-Related Quality of Life Scales for Scoliosis Patients in China," includes all raw data directly within the manuscript.
Funding Statement
The study was supported by Construction of High-level Key Disciplines of Traditional Chinese Medicine by the State Administration of Traditional Chinese Medicine (Orthopedics and Traumatology of Traditional Chinese Medicine; ZYYZDXK-2023059); Shanghai Municipal Commission of Science and Technology (21S21900500); Shanghai Traditional Chinese Medicine Inheritance and Innovation Team of Shanghai Municipal Health Commission (2021LPTD-008); Second Round of the Three-Year Action Plan to Promote Clinical Skills and Clinical Innovation in Municipal Hospitals (2023–2025) (SHDC2024CRI045); Construction of Demonstration Pilot Project on Traditional Chinese Medicine Inheritance and Innovation Development in Pudong New Area, Shanghai (Construction of High-level Research Hospital of Traditional Chinese Medicine YC-2023-0901); The fifth batch of Dragon Medicine Practitioners of Longhua Hospital Affiliated to Shanghai University of Traditional Chinese Medicine (KC2022006), and the third round of the Academic Honor System Distinguished Professor Program at Shanghai University of Traditional Chinese Medicine. There was no additional external funding received for this study. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
References
- 1.Weinstein SL, Dolan LA, Cheng JCY, Danielsson A, Morcuende JA. Adolescent idiopathic scoliosis. Lancet. 2008;371(9623):1527–37. doi: 10.1016/S0140-6736(08)60658-3 [DOI] [PubMed] [Google Scholar]
- 2.Konieczny MR, Senyurt H, Krauspe R. Epidemiology of adolescent idiopathic scoliosis. J Child Orthop. 2013;7(1):3–9. doi: 10.1007/s11832-012-0457-4 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Kebaish KM, Neubauer PR, Voros GD, Khoshnevisan MA, Skolasky RL. Scoliosis in adults aged forty years and older: prevalence and relationship to age, race, and gender. Spine (Phila Pa 1976). 2011;36(9):731–6. doi: 10.1097/BRS.0b013e3181e9f120 [DOI] [PubMed] [Google Scholar]
- 4.Schwab F, Dubey A, Gamez L. Adult scoliosis: prevalence, SF-36, and nutritional parameters in an elderly volunteer population. Spine. 2005;30:1082–5. [DOI] [PubMed] [Google Scholar]
- 5.Kuznia AL, Hernandez AK, Lee LU. Adolescent idiopathic scoliosis: common questions and answers. Am Fam Physician. 2020;101(1):19–23. [PubMed] [Google Scholar]
- 6.Diebo BG, Shah NV, Boachie-Adjei O, Zhu F, Rothenfluh DA, Paulino CB, et al. Adult spinal deformity. Lancet. 2019;394(10193):160–72. doi: 10.1016/S0140-6736(19)31125-0 [DOI] [PubMed] [Google Scholar]
- 7.World Health Organisation. World Health Organisation quality of life. 2012. [Google Scholar]
- 8.Bagó J, Climent JM, Pérez-Grueso FJ, Pellisé F. Outcome instruments to assess scoliosis surgery. Eur Spine J. 2013;22(Suppl 2):S195-202. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Haher TR, Gorup JM, Shin TM, Homel P, Merola AA, Grogan DP, et al. Results of the Scoliosis Research Society instrument for evaluation of surgical outcome in adolescent idiopathic scoliosis. A multicenter study of 244 patients. Spine (Phila Pa 1976). 1999;24(14):1435–40. doi: 10.1097/00007632-199907150-00008 [DOI] [PubMed] [Google Scholar]
- 10.Asher M, Min Lai S, Burton D, Manna B. The reliability and concurrent validity of the Sc coliosis Research Society-22 patient questionnaire for idiopathic scoliosis. Spine (Phila Pa 1976). 2003;28:63–9. [DOI] [PubMed] [Google Scholar]
- 11.Li M, Wang CF, Gu SX, He SS, Zhu XD, Zhao YC, et al. Adapted simplified Chinese (mainland) version of Scoliosis Research Society-22 questionnaire. Spine. 2009;34(12):1321–4. [DOI] [PubMed] [Google Scholar]
- 12.Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539–49. doi: 10.1007/s11136-010-9606-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Mokkink LB, Terwee CB, Stratford PW, Alonso J, Patrick DL, Riphagen I, et al. Evaluation of the methodological quality of systematic reviews of health status measurement instruments. Qual Life Res. 2009;18(3):313–33. [DOI] [PubMed] [Google Scholar]
- 14.Terwee CB, Mokkink LB, Knol DL, Ostelo RW, Bouter LM, de Vet HC. Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res. 2012;21(4):651–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Int J Surg. 2021;88:105906. doi: 10.1016/j.ijsu.2021.105906 [DOI] [PubMed] [Google Scholar]
- 16.Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Shea BJ, Reeves BC, Wells G, Thuku M, Hamel C, Moran J, et al. AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. BMJ. 2017;358:j4008. doi: 10.1136/bmj.j4008 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42. doi: 10.1016/j.jclinepi.2006.03.012 [DOI] [PubMed] [Google Scholar]
- 19.Cheung KM, Senkoylu A, Alanay A, Genc Y, Lau S, Luk KD. Reliability and concurrent validity of the adapted Chinese version of Scoliosis Research Society-22 (SRS-22) questionnaire. Spine. 2007;32(10):1141–5. [DOI] [PubMed] [Google Scholar]
- 20.Zhao L, Zhang Y, Sun X, Du Q, Shang L. The Scoliosis Research Society-22 questionnaire adapted for adolescent idiopathic scoliosis patients in China: reliability and validity analysis. J Child Orthop. 2007;1(6):351–5. doi: 10.1007/s11832-007-0061-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Xie JJ, Liu ZD. Reliability and validity of simplified Chinese version of the Scoliosis Research Society-22 (SRS-22) questionnaire. J Clin Rehab Tissue Eng Res. 2009;13(26):5153–6. [Google Scholar]
- 22.Qiu G, Qiu Y, Zhu Z, Liu Z, Song Y, Hai Y, et al. Re-evaluation of reliability and validity of simplified Chinese version of SRS-22 patient questionnaire: a multicenter study of 333 cases. Spine. 2011;36(8):E545-50. [DOI] [PubMed] [Google Scholar]
- 23.Liu S, Liang J, Xu N, Mai S, Wang Q, Zeng L, et al. Reliability and validity of simplified Chinese version of the Italian spine youth quality of life questionnaire in adolescents with idiopathic scoliosis. BMC Musculoskelet Disord. 2021;22(1):568. doi: 10.1186/s12891-021-04462-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Cheng AY, Jim PK, Kwan NW, Chan SWW, Cheung JPY, Cheung PWH, et al. Cross-Cultural adaptation and psychometric properties of the traditional Chinese version of the Italian Spine Youth Quality of Life (ISYQOL) questionnaire. Healthcare. 2023;11(19):2683. doi: 10.3390/healthcare11192683 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Wei X, Zhu X, Bai Y, Wu D, Chen J, Wang C, et al. Development of the simplified chinese version of the spinal appearance questionnaire: cross-cultural adaptation and psychometric properties evaluation. Spine. 2012;37(17):1497–504. [DOI] [PubMed] [Google Scholar]
- 26.Bao H, Yan P, Lonner B, Qiu Y, Ren Y, Zhu Z, et al. Validation of the simplified chinese version of the body image disturbance questionnaire-scoliosis. Spine (Phila Pa 1976). 2015;40(21):E1155-60. doi: 10.1097/BRS.0000000000001140 [DOI] [PubMed] [Google Scholar]
- 27.Yang H, Liu L, Hai Y, Kang N. Reliability and validity of the Chinese version of the early-onset scoliosis self-report questionnaire in children aged 8 to 18 years with early-onset scoliosis. Transl Pediatr. 2023;12(7):1336–51. doi: 10.21037/tp-22-659 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Hou X, Liu S, Zhou G, Wang Q, Zeng L, Du C, et al. Chinese validation of the quality of life profile for spinal deformities (QLPSD). J Clin Neurosci. 2023;113:7–12. doi: 10.1016/j.jocn.2023.04.014 [DOI] [PubMed] [Google Scholar]
- 29.Hu M, Cai Z, Yang Y, Hong X, Zhang Z, Wang C, et al. Reliability and validity of the adapted Chinese version of the quality of life profile for spine deformities in adolescents with idiopathic scoliosis. Global Spine J. 2024;14(4):1269–76. doi: 10.1177/21925682221139462 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Yang P, Chen G, Wang P, Zhang K, Deng F, Yang H, Zhuang G. Psychometric evaluation of the Chinese version of the Child Health Utility 9D (CHU9D-CHN): a school-based study in China. Qual Life Res. 2018;27(7):1921–31. [DOI] [PubMed] [Google Scholar]
- 31.Liu S, Zhou G, Xu N, Mai S, Wang Q, Zeng L, et al. Translation and validation of the Chinese version of Brace Questionnaire (BrQ). Transl Pediatr. 2021;10(3):598–603. doi: 10.21037/tp-20-377 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Yi H, Chen H, Wang X, Xia H. Cross-cultural adaptation and validation of the chinese version of the brace questionnaire. Front Pediatr. 2022;9:763811. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Guo J, Lau AHY, Chau J, Ng BKW, Lee KM, Qiu Y, et al. A validation study on the traditional Chinese version of spinal appearance questionnaire for adolescent idiopathic scoliosis. Eur Spine J. 2016;25(10):3186–93. doi: 10.1007/s00586-016-4590-5 [DOI] [PubMed] [Google Scholar]
- 34.Gao R, Sun B, Zhang X, Guo D, Fan J, Yao Z, et al. Reliability and validity of the simplified Chinese early-onset scoliosis quality of life 24-item questionnaire. Spine. 2021;46(2):E114–7. [DOI] [PubMed] [Google Scholar]
- 35.Cheung PWH, Wong CKH, Lau ST, Cheung JPY. Responsiveness of the EuroQoL 5-dimension (EQ-5D) in adolescent idiopathic scoliosis. Eur Spine J. 2018;27(2):278–85. doi: 10.1007/s00586-017-5330-1 [DOI] [PubMed] [Google Scholar]
- 36.Lin J, Wong CKH, Cheung JPY, Cheung PWH, Luo N. Psychometric performance of proxy-reported EQ-5D youth version 5-level (EQ-5D-Y-5L) in comparison with three-level (EQ-5D-Y-3L) in children and adolescents with scoliosis. Eur J Health Econ. 2022;23(8):1383–95. [DOI] [PubMed] [Google Scholar]
- 37.Wong CKH, Cheung PWH, Luo N, Lin J, Cheung JPY. Responsiveness of EQ-5D youth version 5-level (EQ-5D-5L-Y) and 3-level (EQ-5D-3L-Y) in patients with idiopathic scoliosis. Spine. 2019;44(21):1507–14. [DOI] [PubMed] [Google Scholar]
- 38.Qiao J, Zhu F, Zhu Z, Xu L, Wang B, Yu Y, et al. Validation of the simplified Chinese version of the Core Outcome Measures Index (COMI). Eur Spine J. 2013;22(12):2821–6. doi: 10.1007/s00586-013-2761-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 39.Zhang X, Wang D, Yao M, Wan R, Liao B. Reliability and validity of Chinese version of brace questionnaire for adolescent idiopathic scoliosis: a cross-sectional study. Medicine (Baltimore). 2021;100(33):e26965. doi: 10.1097/MD.0000000000026965 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Cheung JPY, Cheung PWH, Wong CKH, Samartzis D, Luk KD, Lam CLK, et al. Psychometric validation of the traditional Chinese version of the early onset scoliosis-24 item questionnaire (EOSQ-24). Spine (Phila Pa 1976). 2016;41(24):E1460–9. [DOI] [PubMed] [Google Scholar]
- 41.Li Z, Yue Y, Matsumoto H, Vitale MG, Roye DP Jr, Song X, et al. Reliability and validity of the simplified Chinese version of the Early Onset Scoliosis-24-Item Questionnaire (EOSQ-24). Transl Pediatr. 2020;9(4):513–21. doi: 10.21037/tp-19-177 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Pei W, Yue S, Zhi-Hao Y, Ruo-Yu Z, Bin W, Nan L. Testing measurement properties of two EQ-5D youth versions and KIDSCREEN-10 in China. Eur J Health Econ. 2021;22(7):1083–93. doi: 10.1007/s10198-021-01307-y [DOI] [PubMed] [Google Scholar]
- 43.Negrini S, Aulisa AG, Aulisa L, Circo AB, de Mauroy JC, Durmala J, et al. SOSORT guidelines: orthopaedic and rehabilitation treatment of idiopathic scoliosis during growth. Scoliosis. 2012;7(1):3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44.Lee SB, Chae HW, Kwon JW, Sung S, Lee HM, Moon SH, et al. Is there an association between psychiatric disorders and adolescent idiopathic scoliosis? A large-database study. Clin Orthop Relat Res. 2021;479(8):1805–12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Slobodyanyuk K, Poorman CE, Smith JS, Protopsaltis TS, Hostin R, Bess S, et al. Clinical improvement through nonoperative treatment of adult spinal deformity: who is likely to benefit?. Neurosurg Focus. 2014;36(5):E2. doi: 10.3171/2014.3.FOCUS1426 [DOI] [PubMed] [Google Scholar]
- 46.Smith JS, Shaffrey CI, Glassman SD, Berven SH, Schwab FJ, Hamill CL, et al. Risk-benefit assessment of surgery for adult scoliosis: an analysis based on patient age. Spine (Phila Pa 1976). 2011;36(10):817–24. doi: 10.1097/BRS.0b013e3181e21783 [DOI] [PubMed] [Google Scholar]
- 47.Smith JS, Klineberg E, Lafage V, Shaffrey CI, Schwab F, Lafage R, et al. Prospective multicenter assessment of perioperative and minimum 2-year postoperative complication rates associated with adult spinal deformity surgery. J Neurosurg Spine. 2016;25(1):1–14. doi: 10.3171/2015.11.SPINE151036 [DOI] [PubMed] [Google Scholar]
- 48.Diebo BG, Cherkalin D, Jalai CM, Shah NV, Poorman GW, Beyer GA, et al. Comparing psychological burden of orthopaedic diseases against medical conditions: investigation on hospital course of hip, knee, and spine surgery patients. J Orthop. 2018;15(2):297–301. doi: 10.1016/j.jor.2018.02.010 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 49.Diebo BG, Lavian JD, Murray DP, Liu S, Shah NV, Beyer GA, et al. The impact of comorbid mental health disorders on complications following adult spinal deformity surgery with minimum 2-year surveillance. Spine (Phila Pa 1976). 2018;43(17):1176–83. doi: 10.1097/BRS.0000000000002583 [DOI] [PubMed] [Google Scholar]
- 50.Archer JE, Baird C, Gardner A, Rushton AB, Heneghan NR. Evaluating measures of quality of life in adult scoliosis: a systematic review and narrative synthesis. Spine Deform. 2022;10(5):991–1002. [DOI] [PubMed] [Google Scholar]
- 51.Smeets R, Köke A, Lin C-W, Ferreira M, Demoulin C. Measures of function in low back pain/disorders: Low Back Pain Rating Scale (LBPRS), Oswestry Disability Index (ODI), Progressive Isoinertial Lifting Evaluation (PILE), Quebec Back Pain Disability Scale (QBPDS), and Roland-Morris Disability Questionnaire (RDQ). Arthritis Care Res (Hoboken). 2011;63 Suppl 11:S158–73. doi: 10.1002/acr.20542 [DOI] [PubMed] [Google Scholar]
- 52.Neukamp M, Perler G, Pigott T, Munting E, Aebi M, Roder C. Spine tango annual report 2012. Eur Spine J. 2013;22(Suppl 5):767–86. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
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Data Availability Statement
All relevant data are available in the manuscript and its supporting information files. The first part of this study, titled "Selection and Frequency of Use of Health-Related Quality of Life Measurement Scales for Scoliosis Patients in China," has its detailed raw data archived in the public repository Dryad Digital Repository: https://doi.org/10.5061/dryad.qrfj6q5sk. The second part of this study, "Measurement Properties of Health-Related Quality of Life Scales for Scoliosis Patients in China," includes all raw data directly within the manuscript.