ICF Core Set for head and neck cancer: do the categories discriminate among clinically relevant subgroups of patients?

The multidisciplinary assessment of functioning in patients with head and neck cancer (HNC) according to the ICF Core Set for Head and Neck Cancer (ICF-HNC) was developed in an international and multi-disciplinary approach. The ICF-HNC is an application of the ICF that was adopted by the World Health Organization. The objective of this study was to test whether categories of the ICF-HNC can discriminate among clinically relevant differences in patients. This was a cross-sectional multicentre study in which 267 patients with HNC from 11 different countries participated. All categories were tested within a cumulative logit model to identify which ICF-categories show differences in tumour location, staging, treatment modalities and time since treatment. In the comprehensive ICF-HNC, 84 of the tested categories (76%) reflect differences in at least one of the given parameters. In the Brief ICF Core Sets for HNC (ICF-HNC), all 19 categories (100%) reflect differences. Two categories (social relationships and economic self-sufficiency) showed significant differences among all tested criteria. Most categories of the ICF-HNC are sensitive to clinically relevant differences in the study population. Especially, the ICF component 'activities and participation' holds categories with high discriminative ability for clinically relevant differences. These aspects should be carefully included into rehabilitation plans for HNC

Health professional perspective on disability in head and neck cancer

Objectives. To evaluate problems after head and neck cancer (HNC) from the multidisciplinary team perspective; to classify the results using the International Classification of Functioning, Disability, and Health (ICF); and to compare the results with a patient perspective.Design. Internet-based survey.Participants. There were 103 participants from 27 countries: 50 physicians (otolaryngologists, maxillofacial specialists, and radiation and medical oncologists) and 53 nonphysicians (dentists, psychologists, physiotherapists, speech swallowing therapists, nurses, and social workers).Interventions. Health professionals involved in the treatment of HNC were asked about relevant problems. The survey was Internet based and included 5 questions, 1 for each of the ICF components: Body Functions, Body Structures, Activities and Participation, and contextual Environmental and Personal factors. Answers were translated into ICF categories by 2 independent researchers, and frequencies were calculated. The results were compared with the outcomes of patient interviews based on similar questions.Results. A total of 3643 different answers translated into the ICF using 160 different second-level ICF categories. Less than 1% of answers were not covered by the ICF. There was high consistency in the ratings of food ingestion, pain, and the relevance of the immediate family. In general, health professionals tended to emphasize aspects of anatomical defects and body image, whereas areas of speech and exercise tolerance functions were more often named by patients.Conclusions. The ICF seems to be a comprehensive tool for classifying problems after HNC from the multidisciplinary health professional perspective. There are important differences between the health professional and patient perspectives. We should be aware of this during cancer follow-up sessions and in the creation of rehabilitation plans

Development of ICF core sets for head and neck cancer

Background: Based on the International Classification of Functioning (ICF)-Disability and Health, participants from different professional and cultural backgrounds were invited to achieve consensus on a first version of ICF Core Set for head and neck cancer (HNC). It was designed to set standards for the assessment of functioning in HNC.Methods: The ICF was adopted by the World Health Organization (WHO) in 2001 and was used as the frame of reference. Preselection of potential ICF categories was based on 4 different preparatory studies: patient interviews, health professional surveys, literature review, and multicenter study applying ICF-nomenclature. After training on the ICF, the results of preparatory studies were presented to 21 invited participants to vote in a formal consensus process on both the Brief and Comprehensive ICF Core Set for HNC. Participants came from all 6 WHO world regions, covering 12 different countries. Professional backgrounds included otorhinolaryngologists, maxillofacial surgeons, medical/radiation oncologists, psychologists, physiotherapists, nurses, and social workers.Results: The Comprehensive ICF Core Set for HNC included 112 categories (8% of entire ICF) and the Brief ICF Core Set for HNC included 19 categories (1% of ICF).Conclusion: A first version of ICF Core Sets for HNC was defined. Further validation is in process

Assessment of functional outcomes in head and neck cancer

The goals of the present publication are (a) to identify standardised methods and tools applied in clinical trials and cohort studies to assess key functional aspects in HNC, using the Brief ICF Core Set for head and neck cancer (ICF-HNC) as a reference and (b) to propose a set of sound standardised methods and tools suitable to assess functional problems in HNC. This work contributed to the development of practical ICF-HNC based guidelines targeting the standardised measurement of functional outcomes in HNC follow-up and clinical research in Germany. A systematic review of randomised and clinical controlled trials, and observational studies in HNC were carried out to identify standardised methods and tools. Suitable methods and tools were then selected based on pre-defined criteria. 210 assessment methods and tools were identified in 136 studies: 146 patients reported outcomes (PRO) and 64 tools rated by health professionals. Altogether 59 tools were considered suitable to be included in guidelines: four side effects classifications, two performance status scales, 31 PROs, 10 assessment criteria for clinical examinations, seven assessment methods and tools for the evaluation of technical, equipment-based procedures and five technical, equipment-based procedures. It was possible to identify and select sound and standardised assessment methods and tools for almost all functioning areas defined in the ICF-HNC. Since no tool sufficiently covers support provision by immediate family and by health professionals as well as economic self-sufficiency, we recommend a corresponding update of existing tools

Graphical modeling can be used to illustrate associations between variables describing functioning in head and neck cancer patients

Objective: To examine the associations between variables of functioning measured by the International Classification of Functioning, Disability and Health (ICF) in head and neck cancer (HNC) patients by means of graphical modeling.Study design and setting: Graphical modeling was used on a data set of a cross-sectional multicentric study of 145 patients with HNC. Functioning was qualified using the extended ICF checklist. Multiple imputation was used to handle missing data. The least absolute shrinkage and selection operator for generalized linear models was used to identify conditional associations between the ICF categories. Bootstrap aggregating was used to enhance the accuracy and validity of model selection.Results: The resulting graph shows largely meaningful associations between the ICF categories. One central point could be visualized consisting of a circular path of d330 Speaking, d350 Conversation, b510 Ingestion functions, s320 Structure of mouth, and b310 Voice functions. Another important structure in the graph were the bow-shaped associations beginning with d335 Producing nonverbal messages to b130 Energy and drive functions.Conclusion: Graphical modeling can be used to describe associations between different areas of functioning in HNC patients. They found associations can be the basis for improved rehabilitation and gives a deeper understanding of functioning in HNC patients

Assessment of functioning in patients with head and neck cancer according to the International Classification of Functioning, Disability, and Health (ICF): a multicenter study

Objectives: To assess the level of functioning in patients with head and neck cancer (HNC) using the International Classification of Functioning, Disability, and Health (ICF).Methods: Multicenter study at nine different study centers in four European countries. Data collection included structured interviews according to the extended ICF checklist with 145 HNC patients and completion of the European Organization for Research and Treatment of Cancer-Quality of Life Questionnaires (EORTC-QLQ). The generic ICF checklist was extended by additional HNC-specific categories identified in six HNC-specific questionnaires: EORTC, University of Washington Quality of Life (UW-QOL), Functional Assessment of Cancer Therapy scale (FACT), Performance Status Scale for Head and Neck cancer patients (PSS-HN), Head and Neck Quality of Life instrument (HN-QOL), and Voice Handicap Index (VHI). The ICF qualifier system was applied on a scale from 0 (not impaired) to 4 (completely impaired), as well as "ns, na" (not specified, not applicable) and "c" (impaired due to comorbidity). ICF categories impaired due to HNC (1-4) in > or = 10% of patients were reported.Results: One hundred fifteen (80%) of 144 categories of the extended ICF checklist were identified to be at least mildly impaired or restricted in > or = 10% of patients. The four areas that were relevant to most of the patients were "immediate family" (91%), "friends" (86%), "health services and policies" (85%) and "health professionals" (85%), all belonging to the ICF component of environmental factors. The most often identified categories were "ingestion" (75%) for body functions and "speaking" (76%) for activities and participation. The summary score of all answers correlated well with the overall level of health and quality of life as assessed in the EORTC questionnaires (0.59, 0.61, respectively).Conclusions: The ICF identifies problems in functioning in patients with HNC comprehensively. The results emphasize the importance of contextual environmental factors. In particular, environmental factors referring to interpersonal support should be more strongly included in rehabilitation plans for HNC

Priorities of head and neck cancer patients: a patient survey based on the brief ICF core set for HNC

The International Classification of Functioning, Disability and Health Core Set for Head and Neck Cancer (ICF-HNC) covers the typical spectrum of problems in functioning experienced by patients with head and neck cancer (HNC). The major goal of the present work was to evaluate patients' priorities using the brief ICF-HNC as a starting point. A priorities assessment checklist consisting of 15 statements was created based on the 14 validated categories of the brief ICF-HNC. In a cross-sectional study, patients were requested to select up to 5 items that were especially important to them. The checklist was sent by mail to 465 patients at different time points of cancer follow-up and handed out to 56 patients with recent HNC diagnosis. Altogether 300 (64.51 %) patients returned the checklist. The top priority of our sample was "I want to survive the cancer", followed by "I want that all the expenses for cancer treatment, cancer care and any additional follow-up treatments be covered by my health insurance or by the welfare system", "I want to be able to continue performing all daily life tasks well", "I want to have trusting relationships with my doctors, nurses and therapists" and "I want to be able to speak clearly". Although survival was, as expected, the top priority for patients enrolled in the study, we show that the weight given to survival and further symptoms or daily life activities meaningfully changes when the biopsychosocial perspective proposed in the ICF is adopte

Evaluating sequelae after head and neck cancer from the patient perspective with the help of the International Classification of Functioning, Disability and Health

Functioning is recognized increasingly as an important study outcome with head and neck cancer (HNC). The International Classification of Functioning, Disability and Health, as adopted by the World Health Organization in 2001, is based on a comprehensive bio-psycho-social view. The objective of this study was to evaluate functioning from the patient perspective and to classify the results using the comprehensive view of the ICF. Patients with HNC were interviewed on their problems in daily life using qualitative methodology. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. All individual interviews were digitally recorded and transcribed verbatim. Interview texts were divided into meaning units and the concepts contained in the meaning units were linked to the ICF according to established linking rules. The transcribed data were analyzed and linked by a second health professional and the degree of consensus was calculated using kappa statistics. Concordance of identified ICF categories among different tumor locations was also measured with kappa statistics. Until saturation was reached, 18 patients were interviewed: seven patients with oral cancer, five with hypopharyngeal cancer and six with laryngeal cancer. Thousand four hundred and sixty-two (1,462) different concepts were translated into the ICF using 104 different, second-level ICF categories. These ICF categories are presented in detail. From the patient perspective, the ICF components (a) Body functions, (b) Activities and participation and (c) contextual Environmental factors are equally represented, while (d) Body structures show by far the least number of categories. The concordance between different tumor locations rages between 0.53 and 0.58 (confidence interval 0.42-0.70). The degree of consensus in the linking process was 0.58 (confidence interval 0.45-0.73). The ICF classification can display problems with functioning following HNC sufficiently. For patients with HNC Body functions, Activities and participation in every-day life and contextual Environmental factors are equally relevant. Therefore, rehabilitation of these patients must not confine itself to anatomical and (patho-) physiologic changes, but should move towards a more comprehensive view including the individual patient's demands on daily life and the given individual contextual circumstances