Pathways, Perceptions, and the Luck of the Draw: A Qualitative Study of Adolescent Idiopathic Scoliosis Imaging and Referral Services in England

Introduction

Adolescent idiopathic scoliosis (AIS) requires frequent x-rays for management, exposing young patients to cumulative radiation risks. While radiation-sparing imaging modalities exist, access across the National Health Service (NHS) remains uneven and information given to patients is variable. This qualitative study investigated the systemic, geographic, and interpersonal dynamics of AIS imaging in England.

Design

This qualitative study employed in-depth semi-structured interviews with healthcare professionals (HCPs) from NHS paediatric spinal centres, patients aged 13–25 years old with AIS and parents/carers of young people with AIS.

Setting

England.

Participants

A total of 22 HCPs from 13/24 NHS paediatric spinal centres in England, 19 10-25 years with AIS and 11 parents/carers.

Results

Conventional x-ray remains the main imaging modality. Significant geographic inequality exists. The most commonly available radiation-sparing imaging modality available is the EOS system, which uses slot-scanning technology, is available at 7 centres in England, primarily in London imaging networks. Acquisition of EOS systems is currently driven by local charitable funding rather than a centralised strategy, with high capital and installation costs cited as primary barriers. Inconsistent knowledge of imaging within primary care and a lack of specialist expertise in local secondary care services led to diagnostic redundancy, gatekeeping, and low value inconsistent imaging. These systemic delays frequently closed the window for conservative treatments like bracing. A professional balancing act exists between the duty to inform and the desire to minimise patient anxiety. HCPs often use selective communication regarding radiation risks. Conversely, families demonstrate high relational trust with HCPs and low baseline knowledge of cumulative exposure, often viewing frequent imaging as a reassuring marker of clinical progress. In centres with EOS systems, clinicians felt empowered to lead proactive, transparent risk discussions. In standard X-ray settings, dialogue remains reactive and infrequent, leading to a reliance on implied rather than truly informed consent.

Conclusions

AIS imaging in England is variable. Geographic location dictates access to low-dose radiation technology and the quality of informed consent. Systemic inefficiencies and fragmented referral pathways contribute to diagnostic redundancy and delayed specialist care. National standardisation of clinical pathways, information provision and a centralised strategy for low-dose technology procurement are essential to eliminate structural inequalities and ensure equitable, transparent care for all patients.

STRENGHTS AND LIMITATIONS OF THIS STUDY

• Multidisciplinary and multi-perspective Insight: The study captured a comprehensive overview of the AIS landscape by collecting and analysing data from 22 healthcare professionals representative of different roles within the NHS delivering specialised AIS care alongside the lived experiences of 30 patients and parents/carers.

• Rigorous co-design and patient and public involvement (PPI): The methodology was robustly informed by a Patient Advisory Group (PAG) and a PPI co-applicant, ensuring that interview topic guides and recruitment materials were child-friendly, age-appropriate, and focused on outcomes meaningful to the AIS community.

• Adherence to reporting standards: Transparency and methodological rigour were maintained by following the Standards for Reporting Qualitative Research (SRQR) guidelines and employing Braun and Clarke’s [8] established six-phase thematic framework for systematic data analysis

• Digital recruitment bias: Recruitment of patients and carers was primarily conducted via social media platforms, which may have excluded individuals with limited digital literacy or those not engaged with the Scoliosis Support and Research (SSR) network, potentially limiting the diversity of the sample.

• Lack of ethnic diversity: The sample lacked sufficient representation from minority ethnic groups in the patient group; as AIS prevalence and treatment outcomes can vary across different backgrounds, the findings may not fully reflect the specific cultural or systemic barriers faced by these populations.