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ICF Core Set for persons following an amputation

Amputation refers to the surgical or spontaneous partial or complete removal of a limb or projecting body part covered by skin. The incidence and prevalence of amputation worldwide is difficult to determine precisely. Peripheral vascular disease, either primary or secondary to diabetes, is the most common cause for amputation in the industrialized countries. Non-industrialized countries generally have a higher incidence due to a higher rate of war, trauma and less developed medical systems etc. Trauma is the most common cause in the non-industrialised countries. The number of international as well as internal disputes and the continued use of landmines as well as the increased use of motorised transportation has resulted in a significant increase in the incidence of traumatic amputations worldwide. The predicted continued high levels of conflict worldwide will result in an increasing prevalence of persons with an amputation, equating to an increase in the number of persons with chronic disabling conditions. A wide range of instruments is used by researchers and clinicians to measure health, psychological and social functioning, well-being and life satisfaction of persons with amputation. However, there is currently no consensus regarding the most appropriate measure or measures in this field, and not all available outcome measures have adequate evidence and statistical estimates of validity and reliability. Furthermore, the outcome measures used were unable to comprehensively capture the full picture of functioning and activity limitations of persons who have undergone an amputation. To tackle this issue, Prof. Friedbert Kohler from Sydney South West Area Health Service/Western Zone and Braeside Hospital (Australia), the ICF Research Branch, World Health Organisation (WHO), the International Society for Prosthetics and Orthotics, and numerous other interested clinicians, initiated the ICF Core Set development project for persons following an amputation.

The project is following the well-established process for developing ICF Core Sets that includes 4 preliminary studies (i.e. systematic literature review, qualitative study, expert survey and empirical, cross-sectional study) concluding in a formal, iterative decision-making and consensus process which integrated the results from the 4 preparatory studies.

  • The systematic literature review of 98 studies is now complete. Click here to access the abstract of the published results: Abstract of Xu et al. 2011.
  • The survey of 107 clinical experts is also complete.
  • The qualitative study involving focus groups of 83 patients (in Australia and China) is now complete.
  • The the last preliminary study, the multicentre cross-sectional empirical study with 55 patients in Australia and Malaysia is now complete.

The publications on the results of the expert survey, qualitative study and empirical study are expected in due time.

For pertinent information on ICF research in the area of amputation, see the special issue of Prosthetics and Orthotics International with guest editor, Prof. Friedbert Kohler.

For more information, feel free to contact the ICF Research Branch (Melissa.selb@paranet.ch) or Friedbert.Kohler@sswahs.nsw.gov.au directly.