European white paper: oropharyngeal dysphagia in head and neck cancer

The state of the art and minimum standards of oropharyngeal dysphagia (OD) care will vary by country across Europe and will depend on the setting of the medical care [acute hospital, rehabilitation unit, community nursing home, speech-and-language pathologist (SLP) first-line practice, etc.], the cultural and religious background of the population, and the vision and resources available to policymakers. Given the need for a consensus across Europe for the treatment of OD in head and neck cancer (HNC), The European Society for Swallowing Disorders (ESSD) initiated an alliance with relevant European professional medical and multidisciplinary societies to write a White Paper on this topic. The purpose of this document is to inform key stakeholders including health professionals from the various disciplines involved in the management of OD associated with HNC about the state of the art with regard to the different aspects of care. The document was written by experts from the ESSD, the Confederation of European Otorhinolaryngology Head and Neck Surgery (CEORL-HNS), the European Head and Neck Society (EHNS), the Union of the European Phoniatricians (UEP), and the European Laryngological Society (ELS). It comprises 24 sections covering all aspects of head and neck oncology in a broad sense including legal and ethical issues. A concept document comprising HNC-related topics acted as a foundation for the mandated contributors to add topics or ideas from their professional perspective. Wherever possible, a section was supported by a systematic literature review and we aimed to provide an up-to-date overview of what we believe should be essential core knowledge for health professionals and what should be the minimum standard of care for OD in the HNC setting.

The treatment of choice for the majority of HNC patients comprises surgery and/or (chemo)radiotherapy [(C)RT]. Conservative transoral surgical procedures can offer a solution in the event of early HNC stages (T1–T2) of the oral cavity, the oropharynx, the hypopharynx, and the larynx. The progressive development of transoral robotic surgery (TORS) and transoral laser (micro)surgery (TOLS) in recent years has ensured that these techniques are used worldwide now as a single modality treatment and that the surgical results in early-stage HNC with regard to the oncological outcome are satisfactory [24‐26]. The benefits of TORS and TOLS for early-stage tumors include a less invasive surgical technique, which means that the period of hospital stay is shorter and the risk of loss of function is considerably lower. It is recommended that these techniques should be carried out in well-selected centers by experienced surgeons [27]. In the case of more advanced tumors, the need for more ‘aggressive’ procedures such as open neck surgery is recognized, often leading to severe upper aerodigestive tract and aesthetic function loss depending on the tumor subsite and the tumor stage. Although the improvement of reconstructive surgical techniques, such as the use of microvascular free flaps for cancers of the oral cavity, oropharynx, hypopharynx, and sometimes larynx, or the insertion of a voice prosthesis after total laryngectomy (TLE) has led to substantial progress in functional and aesthetic results, these surgical procedures often result in speech and swallowing impairment, which should be discussed with the patient prior to surgery [28]. Surgical treatment of advanced-stage HNC is usually followed by postoperative (C)RT. It remains a matter of debate as to whether postoperative RT or CRT nullifies the beneficial functional outcome of reconstructive surgery. There are, however, clear indications that RT dose-reduction on the pharyngeal constrictor muscles may lead to a significant reduction in immediate and late swallowing morbidity [29]. Recent retrospective comparisons between transoral surgery and RT for oropharyngeal squamous cell carcinoma (OPSCC) confirm that the oncological results are similar, with surgical approaches leading to better patient-reported outcomes on functional results, at least in cases not requiring postoperative RT [30‐32].

A meta-analysis performed in 2015 suggests that TORS and TOLS are equivalently efficacious as RT for the treatment of early OPSCC in terms of oncological outcome [30]. In more advanced-stage OPSCC RT plays a pivotal role and in an attempt to optimize oncological results, chemotherapy (CT) or cetuximab must be administered concomitant to RT [33]. In the early stages of disease (T1–T2 N0) the 5-year overall survival following conventional RT or TORS/TOLS as single modality treatment varies between 70 and 80% [34]. In advanced tumor stages, due to local (T3–T4) or regional extension (N1-3) the 5-year overall survival rates vary between 20 and 50%. Malignant salivary gland tumors of any histopathology (T1–T4a) are treated with surgery when possible. Postoperative RT is indicated for advanced-stage disease (T3–T4a), intermediate or high-grade tumors, close or irradical margins, lymph node metastases, bone invasion, perineural and vascular invasion, etc. [35]. Nasal and paranasal sinus carcinomas are usually treated with surgery followed by RT [36]. Due to the rarity and histopathological diversity of malignant paranasal tumors, there is no consensus on the therapeutic approach for these cancers [37].

HPV-related OPSCC plays a distinct role in HNC and has been recently recognized as a separate entity besides HPV-negative OPSCC resulting in HPV-specific staging concepts introduced in 2018 [7, 38]. This adjustment in staging was necessary because patients with HPV-associated OPSCC have a noticeably better prognosis than HPV-negative OPSCC [7, 39]. However, to date the HPV-status has not resulted in a de-escalation of treatment intensity. The 5-year overall survival rates for HPV-related OPSCC vary between 70% and above 80%, depending on disease stage [40]. Trials using cetuximab instead of cisplatin as de-escalation strategy for HPV-positive OPSCC showed inferior 2-year overall survival rates for cetuximab compared to cisplatin [7, 38]. In addition to the aforementioned treatment modalities, it is important to emphasize the need for a multidisciplinary setting of HNC care. A well-functioning, experienced MDT is essential for optimal planning, management, and delivery of care for HNC patients. The MDT typically comprises otolaryngologists/phoniatricians, plastic and reconstructive surgeons, maxillofacial surgeons, dental oncologists, radiation and medical oncologists, radiologists, SLPs, dietitians, physiotherapists, occupational therapists, and HNC nurse coordinator/clinical nurse specialists [41]. MDTs seek input from other disciplines including dental/maxillofacial prosthodontics/facial prosthetics, social work, pathology, physiotherapy, occupational therapy, psychology/psychiatry, palliative care, and counseling. Cancer care guidelines advocate that HNC services should be provided by the MDT housed in an established, patient-centered head-and-neck oncology center with a dedicated team of health professionals [42]. Protocols should consider the perspectives of MDT members for different tumor types and those in different professions [43]. Expertise in HNC is important with recommended clinical criteria and minimum patient volumes ensuring high standard care amongst different areas of expertise [44, 45]. A MDT approach results in improved patient outcomes and better survival rates [46‐49], with improved care coordination, reduced time to treatment, and adherence to clinical guidelines [50]. It is recognized that delivery of MDT services through a coordinated head and neck clinical pathway (HNCP) maximizes results, increases efficiency in care delivery, reduces costs, shortens the length of hospital stay, and improves overall patient outcomes [51‐55]. Coordination of a HNC MDT may be challenging [54], yet, despite its complexity, we argue that positive clinical, patient, and service outcomes can best be achieved through the implementation of a well-designed HNCP and MDT approach.

The first step in the management of patients at risk for OD is screening. The purpose of screening is to identify patients at risk for aspiration or swallowing problems. Any HNC patient at risk of OD should be screened. HNC patients at risk of OD are usually screened on their initial pretreatment appointment before the onset of oncological treatment. Screening results in a pass or a fail; patients are deemed to be either at risk (screen failed) or are not at risk (screen passed). Patients who fail screening must be referred for further assessment to evaluate the swallow physiology and functioning and, if possible, determine the cause of swallowing problems [89]. Depending on the acuteness and stability of a patient’s health, screening must be repeated to confirm or adjust previous screening outcomes. Patients who passed earlier screening, but are subject to changing health conditions due to for example aging or the effects of oncological treatments may be at risk of developing OD over time. Screening measures must be valid, reliable, and feasible to administer. Recent diagnostic reviews provide overviews of existing screening measures and their diagnostic performance (e.g., sensitivity, specificity, positive predictive value, negative predictive value, and likelihood ratios). Several reviews recommend water swallowing tests using different endpoints (e.g., choking, coughing) [90‐95] to determine whether patients passed or failed screening. Even though these reviews did not specifically target HNC patients, the use of a water swallowing test seems to be the most appropriate choice in the absence of diagnostic reviews involving HNC patients only.

Given that OD is a multi-faceted phenomenon [96, 97], different dimensions of swallowing do not necessarily correlate. As such, a multidimensional approach to the assessment of OD is needed, including medical and patient history taking; conducting instrumental assessments including FEES or VFSS, and administering clinical assessments and patient self-reports [89]. Medical and patient history information will provide information on factors associated with OD, including (but not limited to): respiratory impairment and use of medication; the presentation (or possibly representation) of pneumonia and sudden unexplained weight loss, etc. Clinical assessment comprises a broad range of assessments, including the functional assessment of cognition and communication abilities; the evaluation of the oral, laryngeal, and pharyngeal functioning in terms of physiology, anatomy, and neurology, with a specific focus on cranial nerve function; oral intake; and oral health. The dietary intake and nutritional status can be reviewed by assessments such as the Functional Oral Intake Scale (FOIS) [98] or the Mini Nutritional Assessment (MNA) [99]. Mealtime observations and trial swallows, using different bolus consistencies and volumes, possibly in combination with postural adjustments and swallowing maneuvers, are conducted to evaluate safety and efficacy of swallowing and options for OD treatment [89, 100]. However, instrumental assessment is required, for example, to rule out silent aspiration or retrieve more detailed information about the swallowing act.

Patient self-evaluation of functional health status (FHS) and HRQOL are conducted by means of self-administered questionnaires. FHS refers to the influence of a given disease or OD on particular functional aspects – for example – an individual's ability to perform normal daily activities such as eating required to meet basic needs, fulfill usual roles, and to maintain health, and well-being [101]. HRQOL, conversely, is the unique personal perception of someone’s health, taking into account social, functional, and psychological aspects [102]. Many questionnaires, however, combine FHS and HRQOL without making a distinction between the two constructs. Commonly used HRQOL questionnaires in oral health (e.g., 5-item Oral Health Impact Profile or OHIP-5) [103] are not specifically developed for patients with HNC, with the exception of the oral health supplementary questionnaire module by the European Organization for Research and Treatment of Cancer Quality (EORTC QOL-OH15) [104]. It is recommended that the EORTC QOL OH-15, which focuses on oral health, should be administered in conjunction with the HRQOL questionnaire EORTC QLQ-C30. This EORTC QLQ-C30 focuses on general quality of life (QOL) in HNC patients [105]. Still, very few questionnaires specifically target OD-related QOL in HNC patients. Examples include the MD Anderson Dysphagia Inventory (MDADI) [106] and the QLQ-H&N35, which has a 4-item subscale on swallowing [107].

Table 1 provides examples of commonly used screening and clinical assessments in HNC patients with OD. However, when selecting measures, only those with robust psychometric properties should be selected, otherwise patient data cannot be interpreted as valid and reliable and no clinical inferences should be made [108, 109]. Recent psychometric reviews on measures in OD have indicated their psychometric status as either poor or lacking data on validity, reliability, and responsiveness in, for example, measures on FHS, HRQOL or visuoperceptual evaluation of FEES and VFSS [110‐112]. Item Response Theory (IRT) has been introduced as a contemporary methodology to interrogate the psychometric quality of measures and should be used in combination with Classical Test Theory (CTT) [109, 113, 114]. Although procedures and interpretation of CTT are relatively straight forward compared with IRT, CTT has some limitations. The CTT framework evaluates the performance of the measure as a whole and is specific to the sample population the measure was tested with. By contrast, in IRT the unit of analysis is the item and results are not bound by the test population [114, 115]. In recent years, IRT has been used to evaluate and critique measures commonly used in OD which calls for the development of new measures or the refinement of existing measures [116‐119]. Future research should focus on comprehensively evaluating all psychometric properties for existing measures and developing new measures validated in patients with HNC using contemporary standards for instrument development, such as COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) [120].

This section deals primarily with airway-related problems due to OD. Other consequences of OD are discussed in separate sections. The topic of positive short- and long-term outcomes for upper aerodigestive tract function associated with low complication rates is one of increasing importance [178, 179].

Both surgical and non-surgical treatment of HNC can result in transient or permanent OD as described in "Pathophysiology and mechanisms of oropharyngeal dysphagia" section [178]. OD puts the patient not only at risk for aspiration pneumonia, malnutrition, dehydration, and choking, which all increase morbidity but also for reduced QOL [180]. Incidence, diagnosis, and management of malnutrition and dehydration are described in further detail in "Cancer cachexia in head and neck cancer" and "Treatment of cancer cachexia" sections. Aspiration pneumonia is recognized as pneumonia secondary to the entrance of food particles, saliva, or gastric acid into the lower respiratory tract [181]. Definitions for aspiration pneumonia vary according to the literature. Kawai and colleagues defined aspiration pneumonia as the presence of wet cough, sputum, and fever in addition to coarse crackles in the chest, elevated inflammatory serum markers and image findings (X-ray or computed tomography scan of the chest) [181]. The incidence of aspiration pneumonia within a year after (C)RT differs, ranging from 5.4 to 23% [182‐184]. Variation in incidence may be due to a higher risk of aspiration pneumonia following CRT or cetuximab with concurrent RT than following RT as a single modality treatment [185]. Malnutrition with hypoalbuminemia is described as a predictive factor for aspiration pneumonia after (C)RT as hypoalbuminemia negatively affects the immune system [185]. Further predictive factors for aspiration pneumonia following (C)RT are poor oral hygiene (OH), use of sleeping pills, coexistence of other malignancies, and habitual alcohol consumption [181]. Szczesniak and colleagues reported that approximately 52% of the patients who received RT and 69% who received (C)RT suffered from long-term OD after treatment, and aspiration pneumonia accounted for 19% of non-cancer-related deaths [186]. Therefore, clinicians should assess the risk of aspiration pneumonia to identify patients for whom efforts to prevent aspiration pneumonia should be intensified [181]. Screening for aspiration with a clinical swallowing test for HNC [e.g. Mann Assessment of Swallowing Ability-Cancer (MASA-C)] and subsequently verifying positive screening results with a FEES or VFSS assessment, should be performed if aspiration is suspected ("Screening and clinical assessment of oropharyngeal dysphagia in head and neck cancer", "Videofluoroscopic swallow study", and "Fiberoptic endoscopic evaluation of swallowing " sections) [187‐189]. The body of literature on comparative incidence and duration of aspiration following conventional HNC surgery, TOLS or TORS remains limited at present [178]. This is the subject of ongoing clinical trials. Aspiration should be anticipated and avoided as far as possible by using airway protective swallow maneuvers under the guidance of specialized SLPs, general patient education, bolus modification ("Bolus consistency modification" section), and sometimes tracheostomy for bronchopulmonary suction ("Tracheostomy and oropharyngeal dysphagia in head and neck cancer" and "Surgical treatment of oropharyngeal dysphagia in head and neck cancer" sections) [151, 181].

Cancer cachexia is defined by Fearon and colleagues is “A multifactorial syndrome characterized by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment” p. 490 [190]. The pathophysiology is characterized by disturbances in the whole body and cellular energy metabolism, muscle protein turnover regulation, and impaired muscle regeneration [190, 191]. Next to these metabolic disturbances patients often suffer from a reduced oral food intake and appetite [190, 192]. Within the HNC population, the incidence of cachexia varies from 6.1 to 66%, depending on the time in relation to treatment and cachexia is more pronounced in locally advanced tumors [193‐195]. Multiple studies have shown that cachexia is related to decreased therapy tolerance, higher treatment toxicity, and above all worse overall survival and progression-free survival [193‐197]. OD is one of the factors leading to a reduced oral food intake in HNC patients [198]. Furthermore, catabolic processes causing muscle atrophy [199] might not only affect peripheral skeletal muscles but also swallowing muscles. The muscle wasting component in HNC patients’ OD is still underexplored, but OD due to sarcopenia (sarcopenic OD) in the elderly population has been reported [200‐203]. Additionally, in cancer patients, an association has been found between skeletal muscle mass and severe OD [204, 205]. Feng and colleagues showed that the cross-sectional area of the geniohyoid muscle, as surrogate for swallowing muscle volume, was significantly lower in aspirating elderly men compared to non-aspirators [206]. These studies support the hypothesis that metabolic derangements in cancer cachexia not only affect overall skeletal muscle mass but also affect swallowing muscle mass in particular, leading to OD. Recently, diagnostic criteria for sarcopenic OD were proposed, but remain difficult to apply in HNC patients [207]. The authors described that a definite diagnosis of sarcopenic OD can only be obtained if imaging is consistent with a loss of swallowing muscle mass [207]. Unfortunately, imaging of swallowing muscles remains challenging. Only a few studies have managed to determine swallowing muscle volume through magnetic resonance imaging (MRI), computed tomography scan, and ultrasound [208‐210]. Swallowing muscle function can be assessed more readily through, among others, tongue-pressure tests [211]. Besides evaluating swallowing muscle function, Maeda and colleagues found other potential clinical predictors for the development of sarcopenic OD. The combination of performance status, ambulatory status, nutritional status, and low amount of oral intake can be used to screen patients at risk of developing sarcopenic OD following hospital admission [212]. Since the presence of cancer cachexia greatly influences treatment toxicity and patient-reported outcomes, screening for muscle wasting in HNC patients is recommended [213‐215]. Body mass index (BMI) measurement cannot reveal a low muscle mass, in particular not when hidden by relative or absolute fat mass abundance. Ideally, a rapid screening method for body composition, such as bioelectrical impedance analysis (BIA) would be suitable for this purpose. It has been shown that measurements of the fat-free mass index using BIA have a prognostic value [198]. In addition, dual-energy X-ray absorptiometry (DEXA) is minimally invasive and enables adequate information on body composition. For study purposes, the use of cross-sectional muscle area on computed tomography scans provides insight in skeletal muscle mass and quality [216]. Future studies are needed to further establish the relationship between skeletal muscle wasting and swallowing muscle wasting in the HNC population. The treatment of cancer cachexia is considered further in "Treatment of cancer cachexia" section.

Beneficence, non-maleficence, justice, and autonomy are interdependent principles that govern present day clinical ethics in most countries [449]. Health professionals apply these basic principles in daily care when confronted with conflicts of values. The principles by themselves are insufficient but constitute a framework that helps us to use a rational method in reaching decisions. More often than not, resolution of ethical conflicts will occur after an interprofessional discussion involving the patient, next of kin, and legal representatives or designated persons with power of attorney. In the context of OD treatment, health professionals will face two types of situations, each with its potential ethical conflicts. In the acute situation, the clinical problem, its complexity and prognosis will be the primary drivers when considering an intervention such as artificial nutrition and hydration (ANH) typically of short duration [450]. In the context of advanced or terminal illness, patient comfort, palliation, and non-maleficence will more strongly influence clinical decision-making. Proportionality of the intervention, inconvenience and discomfort for the patient, patient preference, and the existence of advanced directives will influence the outcome. In this situation, ethical conflicts may occur and an extensive body of literature on this topic already exists as indicated by Druml and colleagues [451]. Given nutrition’s vital nature, even proposals for simple interventions to treat OD might be met with moral objections from a patient, influenced by cultural or religious factors. The abstention of ANH can elicit intense discussions between patients, but even more so between families and medical teams. Starting abstention and stopping ANH are decisions with an important ethical dimension. The Catholic Church has agreed that the abstention of ANH is not defined as euthanasia, and has recognized that in some circumstances, its medical futility can be taken into account [452]. Within the Protestant Church many divergent opinions on the subject exist. The Jewish religion distinguishes between active and passive proceedings and might permit the withholding of ANH but forbids its withdrawing. For conservative and orthodox Jews nutrition is a basic need and not a treatment. The Islam religion considers food and hydration as basic needs too and not as medical treatment but with patient or proxy consent, it can be withdrawn or withheld [451]. It is now commonly accepted that ANH is a medical intervention, with all consequences involved and therefore also needs informed consent. In the past, health professionals would intervene with whatever treatment they considered best for the patient. Fortunately, present daycare takes into perspective the personal preferences of the patient. Therefore, health professionals must obtain the patient’s (or the patient’s legal representative’s) free and informed consent on OD treatment before it commences. Only in emergencies, in non-communicative patients, and in the absence of representation by next of kin should the medical team make decisions in the best interests of the patient. Admittedly, physicians sometimes face conflicts of interest when a patient’s or family’s decision does not seem to align with the current guidelines or evidence-based medicine. This situation can occur when cultural, religious or even superstition influences the decision. The rising problem is that of language barriers and hospitals should be prepared to have interpreters on hand to help physicians and MDT members communicate with patients and relatives in many different languages. Pictorial aids could facilitate obtaining consent in children or illiterate patients. Experienced SLPs play a role in facilitating communication and should be involved at this point. Obtaining informed consent means that the health professionals must have clearly informed the patient about the characteristics of the intended intervention. Not only how information is presented is important in influencing decision-making, but also the time needed by the patient to reflect on choices. When medical conditions permit, such as in elective surgery, the information should be presented as early as possible. The future need for TF depends on the extent of the disease, type of HNC treatment, and wishes of the individual patient as described in "Treatment of cancer cachexia" section. The information that should be offered relates to the following aspects of the intervention: its purpose, nature, degree of urgency, duration, frequency, contra-indications, side effects, relevant risks, necessary aftercare, financial consequences, possible consequences of a refusal to consent, and the possible alternatives. In the majority of the European countries a legal cascade of representatives, usually a spouse or next of kin, are able to make the final decision in the absence of advance directives. More and more people now have written “advance directives”, in which they specify the type of medical care they would want to receive in a particular condition and certainly when he or she would no longer be able, due to incapacity, to make such decisions, and stipulate who should make those decisions for them. In this “living will” people can be granted a durable power of attorney. Health professionals should realize that OD is not merely the impossibility to ingest food through the mouth to the stomach. Eating is not merely the oral ingestion of food, followed by several physiological processes that result in the production of vital energy. Due to its existential nature, being unable to eat or drink has a profound impact on the patient (see "Psychosocial impact" section). Therefore, OD is accompanied by a significant loss of HRQOL. Caregivers often feel morally obliged to start TF, because failing to do so would be ‘starving’ the patient. This train of thought is understandable, however, sometimes the patient benefit of TF is not always clear and the health professional should review the benefit in the short, middle, and long term, as well as possible complications, the current HRQOL, and how it can be improved by TF. A myth that should be dispelled is that the patient who does not want TF is not a candidate for swallowing intervention. Even in case of refusal of TF, swallowing evaluation and intervention should identify strategies to promote the safest means of oral intake.

People treated for HNC are usually given information about how eating and drinking may be affected, but it is difficult for health professionals to adequately convey the reality of what it feels like to be a “patient with OD”. Recently, Checklin and colleagues published a study on HNC patients’ perspectives on OD care experience [453]. They emphasize that patients’ perspectives are valuable to increase insight into how patients experience their ‘rehabilitative journey’. Swallowing is something that we take for granted as human beings until it is impaired through illness. The subsequent impact is not only on our ability to obtain nutrition, but also on socializing, relationships, confidence, and attitude to “beat cancer”. Importantly, “survivorship is not survivorship without QOL”. Patient support groups have been defined in the literature as “a group of people with common experiences and concerns who provide emotional and moral support for one another,” and may also have a role in patient education, improving public awareness, and fundraising [454]. As a primary function, a support group is a forum where newly diagnosed patients, or indeed patients at any stage along their journey may seek the help and support of someone with the shared experience. This extends to families and caregivers who should also form part of this support network. It is important to recognize that support is not unidirectional, and that “veteran” members of a support group also benefit from the process. Support groups may meet face-to-face, via telephone support lines or have online forums, all options showing a positive impact on QOL for patients who are involved and engaged in giving and receiving support [455, 456]. Health professionals should be familiar with the support groups within their local geographic area as well as the most suitable online forums. All patients with HNC should be offered the opportunity and provided with details to contact a support group at the time of diagnosis. Depending on individual hospital practice, many support groups offer for one of their members to meet with patients prior to treatment, a model often used prior to TLE but potentially useful for other types of surgery too. The Swallows Head & Neck Cancer Charity (https://​www.​theswallows.​org.​uk) is one example that offers support and information to both patients and caregivers in many forms; including a 24/7 telephone support line, regular face-to-face monthly meeting groups, and an online social media presence providing topical information relevant to HNC patients. The Swallows Charity aims to function as an “umbrella” organization helping to set up local groups throughout the UK and Europe. Thus far, the Charity has eight support groups based around England and Ireland. The Charity is looking to expand its groups in Spain, Italy, and across Europe during 2020. The Charity Patient/Carers Book is in its 2nd edition and distributed in the UK [457] and Australia [458] and its 1st edition was launched in Spain [459]. What is important is that health professionals are able to signpost patients to these options. Collaboration between health professionals and patient support organizations facilitates the best care and optimal QOL for patients.

This European White Paper summarizes current evidence-based literature on OD in HNC and provides recommendations to support patients and health professionals. Experts from the ESSD, the CEORL-HNS, the EHNS, the UEP, and the ELS described the state of the art of various diagnostic examinations and treatments for OD or OD-related issues in HNC. The body of literature and its level of evidence on diagnostics and treatment remains poor. For some sections of this paper, it was very difficult to come up with a recommendation based on scientific evidence. Therefore, in these sections we provide expert opinion to help health professionals, caregivers, and patients with multiple challenges due to OD in HNC. Despite the fact that the scientific evidence is very limited, it remains challenging to obtain research funding in the European Union for studies on OD in HNC. Possible reasons are that there is increased competition from subjects or conditions with a much higher prevalence than HNC, for example, stroke. Research grants also tend to focus more on the treatment of cancer itself than on the functional impairments or consequences of HNC or its treatment. Yet, it is important to note that survival for this population has not increased spectacularly in recent decades and approximately 50% of the HNC patients in the long term die as a result of the disease. The question, therefore, arises as to whether grant funding agencies should pay more attention to HRQOL in the context of OD in HNC.

We anticipate an increase in the prevalence of OD due to HNC in the near future. Amongst other factors, further aging of our European population (including HNC patients) and an increase in the prevalence of HPV-related cancer, although the HPV vaccination was introduced in various countries, will contribute to this increase in HNC-related OD prevalence. We conclude with a call for further implementation of OD screening in HNC patients and emphasize that the need for scientific research on OD treatment remains a key challenge for European professional associations and policy makers.