BACKGROUND: Physical functioning (PF) is significantly affected following amputation for extremity/pelvic sarcomas. Commonly used health-related quality of life (HRQoL) measures such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) (C30) and the Toronto Extremity Salvage Score (TESS) have not been validated in this population. This study examines the challenges of measuring PF in patients with extremity/pelvic sarcoma after amputation. It explores how these patients interpret the TESS and C30, particularly regarding prosthesis and assistive device use. PF is considered within the International Classification of Functioning, Disability and Health (ICF) framework.
PATIENTS AND METHODS: We conducted semistructured interviews with 20 patients who had undergone amputation for extremity/pelvic sarcoma, recruited from three Dutch sarcoma centers. Interviews explored patients' experiences of PF using the C30 and TESS. Thematic analysis was conducted, with data organized into key themes and subthemes within the ICF framework.
RESULTS: Amputation impacts five interrelated ICF domains: body functions and structures, activity and participation, and environmental factors. Within body functions and structures, patients reported challenges related to sensory functions and pain, movement functions, and genital and reproductive health. In the domain of activity and participation, limitations were noted in general tasks and demands, mobility, self-care, domestic life, and community, social, and civic life. Environmental factors such as products and technology and social support also played a role.
CONCLUSIONS: A tailored measurement strategy is needed for patients with sarcoma post-amputation. Importantly, neither the C30 nor the TESS explicitly accounts for these contextual factors, which can lead to inconsistent or inaccurate scoring of physical functioning in this population.
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