Dimensions of health-related quality of life in spinal cord injury: Including economic benefits and disease-related barriers in a grounded theory framework

CONTEXT: Spinal cord injury is a complex and long-term condition that profoundly affects individuals across physical, emotional, social, and economic domains. OBJECTIVE: This study aimed to explore the multidimensional structure of health-related quality of life (HRQoL) in individuals with spinal cord injury (SCI), incorporating patients' perspectives and extending the scope to include economic benefits and disease-related barriers. METHODS: Using a grounded theory approach, we conducted semi-structured in-depth interviews with 32 adult patients receiving care at a public physiotherapy hospital to gain insights into their lived experiences. In some interviews, family members were present and provided contextual or supportive input when patients had physical or communication limitations. Data were analyzed inductively using the constant comparative. RESULTS: We developed a comprehensive conceptual model of extended HRQoL in SCI. The model comprises seven main dimensions, fifteen sub-dimensions, and thirty-two interrelated concepts. The economic burden of the disease emerged as the core category influencing all other dimensions. The identified extended HRQoL dimensions included physical/medical health, functional health, emotional health, social health, economic benefits, and disease-related barriers. In this study, extended HRQoL refers to a holistic framework that integrates traditional health domains with economic support mechanisms and structural barriers that affect daily life and access to care. CONCLUSION: This framework provides a nuanced understanding of the diverse factors influencing HRQoL in SCI populations and underscores the importance of integrating psychosocial, environmental, and economic domains into rehabilitation strategies.