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

Abstract

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 adopted.

Assessment of functional outcomes in patients with head and neck cancer according to the International Classification of Functioning, Disability and Health Core Sets from the perspective of the multi‐professional team: Results of 4 Delphi surveys

“…Second, recommendations on how to interpret and use information gathered by selected instruments are largely missing so far: cutoff values that guide clinical decision‐making are, for instance, lacking. These findings deeply support the need of developing practical guidelines to propose a standardized set of assessment tools to functional outcomes in head and neck cancer follow‐up, the ultimate goal of our multistep effort to eventually define such recommendations, as reported in this and other publications …”

“…It has been already shown that patients with head and neck cancer perceive activities and participation as well as environmental factors as equally important as body functions, for instance . Moreover, in a recent study, it is shown that priorities of patients with head and neck cancer go far beyond body functions and structures and encompass coverage of treatment expenses, ability to performing daily tasks, and having a trusting relationships with health professionals, among others . Bearing this in mind, it is strongly recommended that more weight is given to the specific assessment of activities and participation as well as environmental factors by the head and neck cancer team.…”

Distress, concerns and unmet needs in survivors of head and neck cancer: a cross-sectional survey

“…), and the high priority HNC survivors place on minimising the financial burden of cancer (Tschiesner et al . ).…”

Shoulder Pain, Functional Status, and Health-Related Quality of Life after Head and Neck Cancer Surgery

“…In ICF, body functions are the physiological and psychological functions of body systems, and impairments are deviations or losses in body functions [38]. Both patient self-reporting and provider-reported impairments of body functions were documented in previous HNC studies using ICF [34, 35, 39]. In our study, functional status, which is impaired body functions, consisted of impaired shoulder function (ICF Code: b710 impaired mobility of joint functions), breathing impairment (ICF Code: b440 imparted respiration functions), eating impairment (ICF Code: b510 impaired ingestion functions), speaking impairment (ICF Codes: b310 impaired voice functions and b320 impaired articulation functions), and impaired body image (ICF Code: b180 impaired experience of self and time functions) [31].…”