Outcome measures for young people with adolescent idiopathic scoliosis: A qualitative exploration of healthcare professionals' perceptions and practices.

BACKGROUND: Limited knowledge exists on current use of patient reported outcome measures (PROMs) and performance measures for adolescents with idiopathic scoliosis (AIS), as well as health care professionals' (HCPs) perceived barriers and facilitators towards their use. This study's objectives were: 1) to explore current practice of HCPs when assessing outcomes for AIS 2) to understand perceived barriers and facilitators of HCPs to use PROMs 3) to understand perceived barriers and facilitators of HCPs to use performance measures. METHODS: A qualitative study recruited a purposive sample of HCPs from a tertiary hospital in the United Kingdom. Mean years of experience managing individuals with AIS was 11.8 years; and included surgeons, physiotherapists and nurses, educated at Bachelor, Masters and Doctoral level. Consent to participate and demographic information were collected in advance of the interviews. In-depth, virtual semi-structured interviews were informed by a topic guide based on current evidence. Interviews of approximately 45 minutes were audio and video recorded and transcribed verbatim alongside written field notes. Data were coded and analysed using inductive thematic analysis, involving researchers with topic and methodological expertise and input from a patient representative. RESULTS: Two themes emerged regarding current practice of using PROMs routine practice and personal evaluations. Four themes emerged as barriers to using PROMs for individuals with AIS: priority and support (e.g., HCPs focus on providing care), practical challenges (e.g., inadequate PROMs), patient-related challenges (e.g., patient preferences) and knowledge, education, and perceived value. Two themes emerged as facilitators: quality existing measure (e.g., sufficient psychometric properties), and priority and support (e.g., research department/culture). Themes for barriers to use performance measures were practicality (e.g., need physical space) and perceived value and knowledge (e.g., PROMs are more important), while the one theme for facilitators was practical consideration (e.g., acceptability). CONCLUSIONS: Although HCPs perceived the value of using outcome measures, current practice indicates limited use for individuals with AIS. The findings revealed different barriers and facilitators to implement PROMs in practice. Adopting performance measure are limited due to lack of knowledge and perceived value alongside the practicality, while considering practical factors can improve the use of these measures in practice.

Predictors of Relevant Changes in Pain and Function for Adolescents With Idiopathic Scoliosis Following Surgery.

STUDY DESIGN: Retrospective analysis of longitudinal data. OBJECTIVE: To evaluate clinically relevant change in surgical outcomes for Adolescents with Idiopathic Scoliosis (AIS), comparing those who achieved smallest detectable change (SDC) in pain and function at 1-year post-surgery with those who did not, and to evaluate the influencing factors. SUMMARY OF BACKGROUND DATA: The SDC is recommended to evaluate the surgical outcomes of AIS. However, little is known about the use of SDC in AIS and its influencing factors. MATERIALS AND METHODS: This was a retrospective analysis of longitudinal data from patients who underwent surgical correction at a tertiary spinal centre from 2009 to 2019. Surgical outcomes were assessed at short-term (6 wk, 6 mo) and long-term (1- and 2-years) post-surgery using the Scoliosis Research Society questionnaire (SRS-22r). The difference between "successful" (≥SDC) and "unsuccessful" (

Barriers and facilitators of physical function, activity, sports and exercise in children and adolescents with spinal pain: a protocol for a systematic review and meta-ethnography.

INTRODUCTION: Spinal pain is one of the leading causes of disability, with the incidence of adolescent back pain estimated at 20%. Multiple barriers influence exercise participation in adolescents. However, there remains a lack of literature surrounding patients' choice to exercise, perceived barriers and facilitators of exercise, and their relationship to participant demographics. The aim of this systematic review with meta-ethnography will be to identify the barriers and facilitators of exercise participation among adolescents with thoracic or lower back pain (LBP). The secondary aim will be to identify any trends in barriers and facilitators of exercise between different demographic groups within children or adolescents under 18 years. METHODS AND ANALYSIS: The seven-phase process identified by Noblit and Hare's meta-ethnography approach will be used. A comprehensive electronic search of databases (AMED, CINAHLplus, EMBASE, MEDLINE, SCOPUS, Nursing & Allied Health, PubMed, PsycINFO, SPORTDiscus, Social Science Database) will be completed during April 2022. Grey literature using reference lists, websites and search engines will also be searched in accordance with Peer Review of Electronic Search Strategies (PRESS) guidelines. Inclusion criteria include: (A) qualitative studies, (B) participants under 18 years experiencing thoracic or LBP, (C) identification of barriers and facilitators of exercise participation in exercise, sports or physical activity and (D) primary research. This systematic review with meta-ethnography review aims to generate theories of behaviours and interpret significance across multiple studies. This process aims to develop future physiotherapeutic behavioural interventions, inform service provision and identify possible future research questions. ETHICS AND DISSEMINATION: No ethical approval was required due to the nature of using previously published work to form a systematic review paper. This systematic review and meta-ethnography will be disseminated through both conference presentations and journal publications. No funding was received for this review. PROSPERO REGISTRATION NUMBER: CRD42022314796.

Content validity of the Scoliosis Research Society questionnaire (SRS-22r): A qualitative concept elicitation study.

INTRODUCTION: Scoliosis Research Society-22 revised (SRS-22r) is the common questionnaire used to evaluate health related quality of life (HRQOL) for young people with adolescent idiopathic scoliosis (AIS). The aim of this study is to evaluate its content validity for this population. METHODS: In-depth semi-structured interviews were conducted with a purposive sample of young people with AIS (Cobb angle ≥25˚, aged 10-18 years). Concept elicitation was used to evaluate the influence of AIS on participants' HRQOL. Participant information sheets and consent/assent forms were age relevant. Topic guide was informed by the SRS-22r and existing evidence. Interviews were audio and video recorded, transcribed verbatim, coded, and analysed using thematic analysis. Derived themes/codes were compared with SRS-22r contents (domains/items). RESULTS: Eleven participants (mean age 14.9 years [SD = 1.8]; 8 female) were recruited. The mean curve size was 47.5° [SD = 18°] and participants had been managed via different approaches. Four main themes emerged with associated subthemes: 1) Physical effects related to physical symptoms (back hurt, stiffness) and body asymmetry (uneven shoulders), 2) Activity-related effects showed impact on mobility (sitting for long periods), self-care (dressing), and school activities (focus during lessons), 3) Psychological effects revealed emotional (feel worried), mental (sleep quality), and body image effects (hide back from others), 4) Social effects (participation in school and leisure activities), and school, friends and mental health support. A weak association was found between items of the SRS-22r and the identified codes. CONCLUSION: The SRS-22r does not adequately capture important concepts that relate to HRQOL of adolescents with AIS. These findings support revision of the SRS-22r, or the development of a new patient reported outcome measure to evaluate HRQOL of adolescents with AIS.

Factors Influencing Participation in Physical Activity, Sports, and Exercise in Children and Adolescents with Spinal Pain or Spinal Conditions: A Systematic Review and Meta-Ethnography.

BACKGROUND: Physical activity is an effective treatment for paediatric spinal pain. However, participation rates remain low and review evidence is needed to establish why. This review identifies factors influencing participation in sports, exercise, and physical activity in those aged 18 or under with spinal pain or spinal conditions. Trends or differences between discrete sub-populations are identified. METHODS: A meta-ethnographic review was undertaken. Qualitative papers were identified and appraised using the JBI checklist. Thematic trends were mapped onto the biopsychosocial model and subthemes identified. Uniqueness was calculated and the confidence in the evidence was evaluated using the GRADE-CERQual tool. RESULTS: Data were gathered from nine qualitative papers (384 participants). Three themes were identified: (1) biological: physical challenges and bladder and bowel care; (2) psychological: perceptions of differences to peers, struggle, anger, sadness, adjustment, and acceptance; and (3) sociological: influence of friends, social acceptance, negative attitudes from others, and the influence of their disability on family routine. CONCLUSIONS: Sociological factors were most influential on exercise participation alongside related psychological and biological factors. Adolescents over 14 years offered greater critical insight compared to the younger children. Results are best applied to neuromuscular conditions with further robust evidence required in paediatric musculoskeletal spinal pain.

Content validity of Scoliosis Research Society questionnaire-22 revised (SRS-22r) for adolescents with idiopathic scoliosis: protocol for a qualitative study exploring patient's and practitioner's perspectives.

INTRODUCTION: Content validity is the most important measurement property for any patient-reported outcome measure (PROM). It being the extent that the PROM measures important concepts that are relevant to the population of interest. Adolescent with idiopathic scoliosis (AIS) is the most common spinal deformity in paediatric populations, with the Scoliosis Research Society questionnaire-22 revised (SRS-22r) a commonly used PROMof quality of life. In the absence of existing evidence, a content validity study for SRS-22r is needed to confirm its suitability for AIS. Thus, this study aims to investigate the content validity of SRS-22r for AIS. A secondary aim is to explore healthcare professional (HCP) perspectives of the barriers and facilitators to using outcome measures in AIS. METHODS AND ANALYSIS: Qualitative study reported according to COnsolidated criteria for Reporting Qualitative Studies. A purposive sample of AIS (n=10-15, Cobb angle >25°, aged 10-18 years) will be recruited for online semi-structured interviews. A convenience sample (n=10-12) of HCP with clinical and/or research experience in AIS will be recruited for a focus group discussion. Topic guides and age-relevant documents are informed by existing evidence and developed using a framework of concept elicitation and cognitive debriefing. Audio-recordings will be transcribed verbatim, coded, analysed and synthesised using interpretive phenomenology analysis. Themes that generated from the analysis will be used as codes that will then be mapped to the SRS-22r contents. ETHICS AND DISSEMINATION: The Health Research Authority and Health and Care Research Wales approval have been granted (IRAS 289888). Study findings will be disseminated through publications in peer-reviewed journals and conference presentations.

Physical Functioning in Adolescents with Idiopathic Scoliosis: A Systematic Review of Outcome Measures and Their Measurement Properties.

STUDY DESIGN: A systematic review. OBJECTIVE: To summarize evidence on measurement properties of Outcome Measures (OM) used to assess physical functioning in adolescents with idiopathic scoliosis (AIS). SUMMARY OF BACKGROUND DATA: The AIS is a common spine deformity in those aged 10 to 18 years old. Associated health problems (e.g., back pain) significantly impact the quality of life (QoL). One important domain in QoL is physical functioning, which can be measured with patient-reported outcome measures (PROM), performance-based outcome measures (PBOM), and body structure and function OM. Adequate measurement properties of OM are important for precision in research and practice. METHODS: A two-staged search strategy was performed on electronic databases up to December 2019. Search one revealed a list of OM was used for physical functioning assessment in AIS. Search two identified studies that evaluated the measurement properties of OM in AIS; using the list identified in search one. Two independent reviewers determined study eligibility, risk of bias assessment (COnsensus-based Standards for the selection of health Measurement INstruments [COSMIN] checklist), and performed data extraction. The level of evidence was established using a modified GRADE approach. RESULTS: Search one yielded: 28 PROM, 20 PBOM, and 10 body structure and function OM. Search two revealed: 16 measurement properties studies for PROM, one for PBOM, and three for body structure and function measures. Construct validity, reliability, and responsiveness of most PROM has been established in AIS, but not content validity or internal consistency (moderate evidence). Construct validity was sufficient for the Timed Up and Go test and body structure and function measures (very low to low evidence). CONCLUSION: Currently, physical functioning is evaluated with a variety of measures in AIS. The majority of measurement properties studies evaluated PROM with a paucity of information on measurement properties of PBOM and body structure and function OM. Based on COSMIN methodology, none of the OM identified in this review can be recommended with confidence in individuals with AIS.Level of Evidence: 2.

Outcome measures evaluating physical functioning and their measurement properties in adolescent idiopathic scoliosis: a protocol for a systematic review.

INTRODUCTION: Physical functioning (PF) is the ability to carry out the physical activity of daily living. It is an important outcome that provides a meaningful evaluation of individuals' life. PF can be assessed using patient-reported outcome measures, performance-based outcome measures or body structure and function measure. Measures need to be valid, reliable and responsive to change to evaluate the effects of an intervention. Adolescent idiopathic scoliosis (AIS) is the most common deformity among the paediatric population and impacts on individuals' lives. This systematic review will appraise evidence on the measurement properties of PF tools in individuals with AIS. METHODS/ANALYSIS: A protocol for systematic review and meta-analysis informed by Cochrane guidelines is reported in line with Preferred Reporting Items for Systematic Reviews and Meta-Analysis-P. MEDLINE, PsycINFO, EMBASE, CINAHL, SPORTdiscus, Web of Science and PubMed will be searched in two stages, from inception until December 2019. Search 1 will inventory all studies that assessed PF in participants with AIS, without any limitations. The search terms will be scoliosis, adolescent and PF-related terms. Search 2 will include studies which investigated instrument measurement properties in the same population for measures identified in search one. Two reviewers will independently perform study selection, data extraction, risk of bias and overall quality assessment. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias and a modified Grading of Recommendations, Assessment, Development and Evaluation (GRADE) guidelines will be used. A meta-analysis will be conducted if possible, or the evidence will be synthesised and summarised per measurement property per outcome measure per measurement type. ETHICS AND DISSEMINATION: This review will provide recommendations for practice and future research, considering psychometric properties of outcome measures of PF in AIS. The results of this study will be disseminated through a peer-reviewed publication and conference presentation. PROSPERO REGISTRATION NUMBER: CRD42019142335.

Cross-Cultural Adaptation and Validation of the Back Beliefs Questionnaire to the Arabic Language.

STUDY DESIGN: Translation, cross-cultural adaptation, and psychometric testing. OBJECTIVE: To translate the Back Beliefs Questionnaire (BBQ) into Arabic and investigate its psychometric properties in an Arabic-speaking sample of individuals with low back pain (LBP). SUMMARY OF BACKGROUND DATA: Back pain beliefs are associated with pain chronicity and disability in people with LBP. The BBQ is a recognized and frequently used tool for measuring these beliefs. To date the BBQ has not been translated into Arabic. METHODS: The English version of the BBQ was translated and culturally adapted into Arabic (BBQ-Ar) according to published guidelines. The BBQ-Ar was then tested in a sample of 115 Arabic-speaking individuals with LBP. Reliability was evaluated through internal consistency (Cronbach α) and test-retest reliability (intraclass correlation coefficient), the latter in a subgroup of 25. Construct validity was assessed using exploratory factor analysis and by examining the correlation between the BBQ-Ar, the Oswestry Disability Index and a Numerical Pain Rating Scale. RESULTS: Internal consistency of the BBQ-Ar was good (Cronbach α = 0.77). Test-retest reliability was good (intraclass correlation coefficient [2,1] = 0.88). Exploratory factor analysis revealed a three-factor structure, explaining 46% of total variance, with the first factor alone explaining 24%. Eight of the nine scoring items were loaded on the first factor thus forming a unidimensional scale. A significant negative correlation was found between Oswestry Disability Index and BBQ-Ar scores (r = -0.307; P < 0.01), whereas no significant correlation was found between BBQ-Ar and Pain Rating Scale scores. No floor or celling effects were observed. CONCLUSION: The BBQ-Ar is a valid and reliable tool that can be used to assess back pain beliefs in Arabic-speaking individuals. LEVEL OF EVIDENCE: N/A.