Stakeholder perspectives on brain tumour care across rural-urban boundaries: a reflexive thematic analysis
Aryaman Sharma1, Kaytlin Andrews1, Elizabeth Calvert2
1Department of Medicine, Queen's University, Kingston, Ontario, Canada.
Objectives:
To explore stakeholder perspectives on care coordination barriers and facilitators in regionalised neuro-oncology delivery, using brain tumours as a model for examining complex care pathways serving mixed rural-urban populations.
Design:
Reflexive thematic analysis of semistructured interviews from stakeholders across the neuro-oncology care pathway was used to identify themes of care system strengths, barriers to effective service delivery and priorities for system improvement.
Setting:
Regionalised Canadian health system serving one of Ontario's largest catchment areas, characterised by predominantly rural populations and substantial geographic distances to tertiary care.
Participants:
36 stakeholders purposively sampled to represent diverse roles across the care pathway, including family caregivers (n=6), healthcare providers from multiple specialties and care settings (n=28) and Indigenous community advisors (n=2).
Results:
Thematic analysis identified seven themes organised within two broad domains: care system strengths and barriers to care continuity. Care system strengths included three themes: responsive palliative care integration, provider dedication and compassionate commitment, and intra-institutional coordination infrastructure. Barriers to care continuity included four themes: insufficient pathway standardisation across settings; inadequate educational infrastructure for patients, families and providers; absent cross-institutional coordination infrastructure and limited regional clinical trial access. Participants described relatively coordinated processes within the tertiary centre, while communication and follow-up were more fragmented at interfaces with referring hospitals and community services, with participants describing patients becoming 'lost in transitions'.
Conclusions:
Findings reveal how regionalised cancer systems can achieve localised coordination while experiencing fragmentation at interfaces between organisations. Participants described relatively coordinated processes within the tertiary centre, alongside more fragmented communication and follow-up across interfaces with referring hospitals and community services. These stakeholder perspectives highlight potential directions for service redesign, including standardised pathways, shared information systems and clearer cross-site accountability structures, which warrant future evaluation alongside consideration of resource allocation and local feasibility. Brain tumours, requiring rapid multidisciplinary coordination, expose these interface failures with clarity, offering transferable insights for improving integrated cancer care in regionalised health systems serving geographically dispersed populations.
