Understanding Physical Functioning in Patients with Sarcoma After Amputation: Using an International Classification of Functioning, Disability and Health (ICF) Approach

Annals of Surgical Oncology, vol. 33, pp. 6867–6880

Abstract

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.

Authors 13

1. Tom I. Bootsma corresponding

   Erasmus MC · The Netherlands Cancer Institute

   Affiliation as printed

   Department of Medical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands. t.bootsma@erasmusmc.nl

   Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands. t.bootsma@erasmusmc.nl

2. Dide den Hollander

   Radboud University Medical Center · The Netherlands Cancer Institute

   Affiliation as printed

   Department of Medical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands

   Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands

3. Milou J. P. Reuvers

   Erasmus MC · The Netherlands Cancer Institute

   Affiliation as printed

   Department of Medical Oncology, Erasmus University Medical Center, Rotterdam, The Netherlands

   Department of Medical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands

4. Ingrid M.E. Desar

   Radboud University Medical Center

   Affiliation as printed

   Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands

5. Roger Wilson
   Affiliation as printed

   Sarcoma Patient Advocacy Global Network, Wölfersheim, Germany

6. Michiel A. J. van de Sande Aachen Department of Orthopaedic Surgery

   Leiden University Medical Center

   Affiliation as printed

   Department of Orthopaedic Surgery, Leiden University Medical Center, Leiden, The Netherlands

7. Winan J. van Houdt

   The Netherlands Cancer Institute

   Affiliation as printed

   Department of Surgical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands

8. Ingrid C.M. van der Geest

   Radboud University Medical Center

   Affiliation as printed

   Department of Orthopaedic Surgery, Radboud University Medical Center, Nijmegen, The Netherlands

9. Bart H. W. B. Schreuder

   Radboud University Medical Center

   Affiliation as printed

   Department of Orthopaedic Surgery, Radboud University Medical Center, Nijmegen, The Netherlands

10. Suzanne E. J. Kaal

    Radboud University Medical Center

    Affiliation as printed

    Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands

11. Johannes J. Bonenkamp

    Radboud University Nijmegen · Radboud University Medical Center

    Affiliation as printed

    Department of Surgery, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands

12. Winette T. A van der Graaf

    Erasmus MC · The Netherlands Cancer Institute

    Affiliation as printed

    Department of Medical Oncology, Erasmus University Medical Center, Rotterdam, The Netherlands

    Department of Medical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands

13. Olga Husson

    Erasmus MC · The Netherlands Cancer Institute

    Affiliation as printed

    Department of Medical Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, The Netherlands

    Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands

    Department of Surgical Oncology, Erasmus University Medical Center, Rotterdam, The Netherlands