Vol.:(0123456789) 1 3 Dysphagia https://doi.org/10.1007/s00455-019-10005-0 ORIGINAL ARTICLE What Are We Really Measuring? A Content Comparison of Swallowing Outcome Measures for Head and Neck Cancer Based on the International Classification of Functioning, Disability and Health (ICF) Rebecca Louise Nund 1,2  · Bena Brown 1,2,3  · Elizabeth Celeste Ward 1,2  · Julia Maclean 4,5  · Justin Roe 6,7,8  · Joanne M. Patterson 9,10  · Rosemary Martino 11,12,13 Received: 5 February 2019 / Accepted: 23 March 2019 © Springer Science+Business Media, LLC, part of Springer Nature 2019 Abstract A combination of outcome measures are required to provide important information on the physiological profile and associ- ated impact of dysphagia in head and neck cancer (HNC). Choosing the most appropriate tool can be a difficult and time- consuming process. The aim of this study was to identify and then compare the content of tools commonly used to assess swallowing post HNC care using the International Classification of Functioning Disability and Health (ICF) as a reference. A literature audit of 11 databases was conducted for relevant articles published between January 2004 and June 2017 and total of 502 papers met the inclusionary criteria. These papers were audited and 27 tools were identified which met the study criteria. The meaningful concepts contained in each tool were mapped to the ICF. Within the 27 tools, 898 meaning- ful concepts were identified and matched to 60 ICF categories. The most frequently matched ICF categories related to body functions, while comparatively few concepts matched to activity and participation and environmental factors. This study has identified that a large number of tools are currently being used in HNC research to measure swallowing outcomes. The sheer number of tools available to explore dysphagia post HNC highlights the lack of a uniform approach to outcome measurement which limits the potential to compare and combine research studies in order to strengthen treatment evidence. There is a need to develop an international consensus for a core outcome set of swallowing related measures, that capture the holistic impact of dysphagia, for HNC. Keywords Deglutition · Deglutition disorders · Head and neck cancer · ICF · Outcome measures Introduction The physiological profile of dysphagia associated with head and neck cancer (HNC) is well established in the literature [1]. Dysphagia is a multifactorial condition that can have serious medical, psychosocial and existential effects on the everyday lives of HNC survivors [1–4]. As a result, meas- uring dysphagia-related outcomes throughout the patient journey is a mainstay of both research and clinical practice in HNC [5–7]. An array of validated and reliable tools have been developed to measure dysphagia and its impact. How- ever, different tools may fit different purposes and often more than one tool is required to measure the multifactorial and complex nature of dysphagia in HNC. Numerous tools have been developed to address swal- lowing outcomes [8–10], and therefore, selecting the most appropriate tool or group of tools specifically for HNC care can be an arduous and time-consuming process. Further- more, systematic reviews of the tools currently used to meas- ure and monitor dysphagia (without any specific popula- tion focus) have noted that many have low levels of validity and reliability [8–10]. Whilst selecting measures based on their psychometric properties is a critical consideration, the selection of the most appropriate tools for a particular clini- cal or research context is heavily influenced by the content Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00455-019-10005-0) contains supplementary material, which is available to authorized users. * Rebecca Louise Nund r.nund@uq.edu.au Extended author information available on the last page of the article