Persons with head and neck cancer (HNC) sometimes face drastic functional problems in breathing, eating, speech production and pain. Also disfigurement can lead to changes in self-image, worsened relationship with the partner and increased social isolation. Determining how to measure functioning in every-day life-situations or quality of life has been a challenging task. Previously available measures often posed issues of reliability, validity, conciseness and/or cross-cultural application. In addition, many tools concentrated on selected aspects of the entire problem. For clinical practice and research it having a practical framework that covers the entire spectrum of disabilities and guides all aspects of rehabilitation would be valuable. To tackle this issue, the World Health Organization (WHO) and the ICF Research Branch, with scientific support from the Department of Otorhinolaryngology at Ludwig-Maximilian University (Germany), Merseyside Head and Neck Cancer Centre at University Hospital Aintree (UK), Dept. of Otorhinolaryngology at Leipzig University (Germany), Department of Otolaryngology at University of Minnesota (USA), University of Iowa (USA) and Washington University School of Medicine (USA), initiated a project to develop ICF Core Sets which can serve as minimal standards for the assessment and documentation of functioning and health of persons with HNC in clinical studies, clinical encounters and multi-professional comprehensive assessment.

In the preparatory phase of the project, a systematic literature review, a qualitative study, an expert survey and a multicentre cross-sectional study were conducted:

• A systematic literature review was performed to identify parameters and outcomes reported in studies published from 2000-2006 involving persons with HNC as well as to identify and quantify the concepts contained in those parameters and outcomes using the ICF as a reference.
• A qualitative study i.e. 18 individual interviews with patients with HNC attending the cancer follow-up outpatient clinic at the Dept. of Otorhinolaryngology at Ludwig-Maximilian University was performed to identify the aspects of functioning and health which are important to the participants, and to list those aspects using the ICF as a reference.
• An internet-based expert survey was performed to gather the opinion of an international pool of 103 experts of different health professions (physicians, dentists, psychologists, physical therapists, speech and swallowing therapists, nurses, and social workers) from 27 countries regarding the most relevant and typical areas to be considered in individuals with HNC.
• A multicentre cross-sectional study with 145 patients was performed at 9 study centres in Greece, Poland, Germany and Turkey to assess which aspects of functioning are relevant to patients with HNC from the ICF perspective and to differentiate the different aspects according to frequency and intensity in which they affect the patient.

An international ICF consensus conference took place at the Swiss Paraplegic Research, from 22-24 November 2007. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with HNC. Twenty-one HNC experts from 7 health professions (otorhinolaryngologists, maxillofacial surgeons, medical/radiation oncologists, psychologists, physiotherapists, nurses, and social workers) and from 12 countries decided which ICF categories are to be included in the ICF Core Sets for HNC following a multi-stage, iterative decision-making and consensus process which integrated the results from the 4 preparatory studies.

112 ICF categories were selected for inclusion in the Comprehensive ICF Core for HNC. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment to set rehabilitation goals and to evaluate progress. Out of the 112 Comprehensive ICF Core Set categories, 19 ICF categories were selected as candidate categories for the Brief ICF Core for HNC. The Brief ICF Core Set can be used as the minimal standard to assess and report on functioning and health in persons with HNC. Currently, an interdisciplinary set of guidelines is being developed for the aftercare of patients with HNC using these ICF Core Sets.

The project has been funded by the Deutsche Krebshilfe e.V.

For more information, feel free to contact the ICF Research Branch (uta.tschiesner@med.lmu.de).

• Comprehensive ICF Core Set for head and neck cancer (download PDF)
• Brief ICF Core Set for head and neck cancer (download PDF)