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Development
of ICF Core Sets for Head and Neck Cancer (HNC)
This project has been developed in collaboration between the
Department of Otorhinoloryngology at the University of Munich,
Germany and the ICF Research Branch of the WHO Collaborating
Center for the Family of International Classifications at
the German Institute of Medical Documentation and Information
(DIMDI) at the University of Munich, Germany. The Core Set
development project is funded by Deutsche Krebshilfe e.V.,
a German well-known non-profit organization against cancer.
Most malignant tumors of the upper aero-digestive-tract are
located in the oral cavity, the oro- and hypopharynx and the
larynx. Symptoms depend on the localization and size of the
tumor: Hoarseness and other speech deficiencies, inspiratory
dyspnoe, decreased mouth opening, trouble with food intake
including social eating and even a complete incompatibility
of swallowing, as well as localized pain, paresthesia and
paretic muscle function. Extensive bleeding may occur due
to erosion of the great arteries in the anterior neck region.
Indolent nodules arise at the head and neck due to primary
tumor growth or nodal metastasis.
Upper aerodigestive tract malignancies are an important contributor
to the burden of cancer. Those who survive frequently have
altered appearances and/or disabilities associated with treatment.
Speech and swallowing (as assessed by the patient) and pain
are probably the most important factors determining general
well-being 12-24 months after cancer therapy.
Patients with and without tumor recurrence both show a great
need for rehabilitation. Although the underlying tumor may
not be completely cured, rehabilitation can reduce symptoms,
disability and possibly health care costs- making rehabilitation
successful for both the individual and society.
Rehabilitation
itself is an interdisciplinary management of a patient's functioning
and health. With these patients it requires close cooperation
and communication between various health care professionals,
e.g. ENT-surgeons, maxillofacial-surgeons, radiotherapists,
oncologists, psychologists, nurses, speech and swallowing
rehabilitation therapists and social workers.
Aim of this ICF Core Set development project is the selection
of two sets of ICF categories (known as a "brief"
and a "comprehensive" Core Set) out of the entire
ICF classification to facilitate and improve communication
between health care professionals, researchers and patients.
The project for cancer of the upper aero-digestive tract follows
a similar format as the other ICF Core Set development studies:
Phase 1 includes a systematic review of existing instruments
published in English literature (part A), individual interviews
with patients (part B), an e-mail-based survey with world-wide
recognized experts (part C) and an ICF checklist study (part
D). Phase 2 is a consensus conference which integrates information
from phase 1 studies and is scheduled for October 2007. The
conference will be followed by a validation project in phase
3.
The development of ICF Core Sets is designed to be an inclusive
and open process. We, therefore, invite both clinical experts
and patients to actively participate.
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