Saudi Cultural Missions Theses & Dissertations
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Item Restricted Evaluation of Outcome Measures for Adolescents with Idiopathic Scoliosis Using a Mixed-Method Approach(University of Birmingham, 2023) Alamrani, Samia; Henghan, Nicola; Falla, Deborah; Alison, Rushton; Gardner, AdrianAdolescent idiopathic scoliosis (AIS) is a common spinal deformity among the paediatric population, affecting their physical, mental, and social well-being. Approximately 10% of those affected require interventions, including surgery. Studies on surgical fusion in AIS present conflicting findings of postoperative back pain, functional limitation, and the factors influencing these outcomes. While various Outcome Measures (OMs) are used to evaluate the outcomes of AIS interventions, there is an important gap in the comprehensive evaluation of their measurement properties. The reference standard patient-reported outcome measure (PROM) for individuals with AIS is the Scoliosis Research Society (SRS) questionnaire. However, a qualitative assessment of its appropriateness for this specific population has not been conducted previously. Therefore, this thesis presents five studies to explore the current use of OMs) for individuals with AIS, and to evaluate their measurement properties. In Chapter Two, a retrospective longitudinal cohort study was conducted to analyse functional outcomes in individuals with AIS using the SRS-22r questionnaire. The study compared outcomes between those who achieved the smallest detectable change (SDC) in SRS-22r and those who did not, while also identifying predictors (e.g., age) of achieving these scores. Overall, most of the SRS-22r domains reach or exceed the SDC at 1 year except function and pain scores. Findings suggest a shortcoming in the SRS-22r questionnaire which prompted a subsequent systematic review in Chapter Three. The systematic review aimed to identify current OMs used to evaluate Physical Functioning (PF) in individuals with AIS. Review findings revealed insufficient measurement properties, particularly in terms of content validity, for the identified PROMs based on Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN) guidelines. Furthermore, only one performance-based outcome measure (PBOM) their measurement properties evaluated among individuals with AIS, indicating limited use. Chapters Four and Five aimed to evaluate the content validity of the frequently used questionnaire for this population i.e. the SRS-22r. A qualitative study design was employed in Chapter Four to assess the content validity of the SRS-22r through cognitive debriefings with healthcare professionals (HCPs) and individuals with AIS. The questionnaire's comprehension, comprehensiveness, and relevance to individuals with AIS revealed numerous issues, highlighting the need for a concept elicitation study and refinement of SRS-22r questions and response options. Refinements to some of the SRS-22r questions and response options were proposed by participants. Further testing with another round of cognitive debriefing interviews is still needed to further refine the SRS-22r questionnaire. Chapter Five reports a qualitative study which was conducted to identify the most important concepts related to Health- Related Quality of Life (HRQOL) in individuals with AIS, building upon the findings from Chapter Four. Findings highlighted that the AIS has a broad impact on HRQOL of individuals with AIS, encompassing physical, activity, psychological and social effects. Comparing these themes with the contents of the SRS-22r, a limited matching was found indicating that the SRS-22r is not comprehensive enough to fully assess HRQOL of individuals with AIS. Collectively, these studies provide critical evidence underpinning the rationale to support the development of a new, age- and language-appropriate PROM that accurately captures the experiences of individuals with AIS. In Chapter Six the perspectives of HCPs on the use of PROMs and PBOM among individuals with AIS were explored through qualitative interviews. To address the limited utilisation of these measures in practice; previously identified in the in Chapter Three. Many barriers (e.g., inadequate PROMs), and facilitators (e.g., quality existing measure) were identified for the use of PROMs and PBOMs among individuals with AIS. Overall, this thesis highlights the importance of using population specific and appropriate OMs to evaluate HRQOL in individuals with AIS. It emphasises the need for valid and comprehensive measures being language and age-specific questionnaires, which are more relevant and meaningful to the unique experience of individuals with AIS.15 0