Purpose To develop a European White Paper document on oropharyngeal dysphagia (OD) in head and neck cancer (HNC). There are wide variations in the management of OD associated with HNC across Europe. Methods Experts in the management of specific aspects of OD in HNC across Europe were delegated by their professional medical and multidisciplinary societies to contribute to this document. Evidence is based on systematic reviews, consensus-based position statements, and expert opinion. Results Twenty-four sections on HNC-specific OD topics. Conclusion This European White Paper summarizes current best practice on management of OD in HNC, providing recommendations to support patients and health professionals. The body of literature and its level of evidence on diagnostics and treatment for OD in HNC remain poor. This is in the context of an expected increase in the prevalence of OD due to HNC in the near future. Contributing factors to increased prevalence include aging of our European population (including HNC patients) and an increase in human papillomavirus (HPV) related cancer, despite the introduction of HPV vaccination in various countries. We recommend timely implementation of OD screening in HNC patients while emphasizing the need for robust scientific research on the treatment of OD in HNC. Meanwhile, its management remains a challenge for European professional associations and policymakers.

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Background Dysphagia (swallowing difficulty) is one of the most common and debilitating sequelae of head and neck cancer (HNC). Patient-reported outcome measures (PROMs) are a fundamental component of dysphagia outcomes evaluation, as they inform treatment consequences that cannot be captured by objective clinician measures. Many PROMs for dysphagia in HNC are available, but their validity is unclear. As a consequence, the selection of the most appropriate PROM for dysphagia in HNC is complex and often based on the clinician’s personal preferences, rather than on valid psychometric properties. This protocol describes a systematic review aiming at (1) identifying PROMs specific to dysphagia symptoms, swallowing functional status, swallowing-related health status, and swallowing-related quality of life in HNC, (2) mapping them to our conceptual framework of dysphagia-related PROs, and (3) appraising their psychometric properties using the Consensus Based Standards for the Selection of Health Measurement Instrument (COSMIN) methodology. Methods Six electronic databases will be searched from inception to December 2020 for all primary studies in any language and design detailing PROM development, reliability, validity, feasibility, interpretability, and/or cross-cultural adaptation. Eligibility criteria will target PROMs for patients with HNC (≥ 90% of the study sample) with ≥ 20% of their items pertaining to swallowing. Two independent raters will screen abstract and full texts and a third rater will resolve discrepancies. Data will be extracted on study, sample and PROM characteristics, and results of psychometric testing. PROMs will be mapped to our conceptual framework. The methodological quality of included PROMs and their psychometric properties will be appraised using the COSMIN risk of bias checklist and evidence will be summarized using a modified Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. Discussion This systematic review will provide a summary of existing dysphagia-related PROMs for people with HNC and a comprehensive account of their psychometric properties. We will provide recommendations on PROMs selection which will aid healthcare professionals to the most appropriate PROM based on its validity, reliability, feasibility, interpretability and suitability for clinical and research settings. Further recommendations will be made on areas of measurement property requiring further testing. Systematic review registration PROSPERO registration ID: CRD42021237877

Feeding and swallowing disorders are prevalent in adults with Intellectual Disability (ID) and can potentially lead to discomfort, malnutrition, dehydration, aspiration, and choking. Most common interventions include: diet modification, compensatory strategies, swallowing therapy, and non-oral feeding. Despite their common use, the research evidence for these interventions is lacking. The current study aimed to systematically review the evidence for the safety and the effectiveness of interventions for feeding and swallowing disorders in adults with ID. Seven electronic databases, conference proceedings, and reference lists of relevant studies were reviewed from online availability to March 2019, with no language restrictions. Eligibility criteria encompassed experimental or non-experimental study design, adults (> 18 years) with ID and feeding and/or swallowing disorders (any etiology and severity) and any intervention for feeding and/or swallowing disorders. Methodological quality was assessed by two independent reviewers using the Downs and Black checklist. Four articles met the inclusion criteria. All included studies considered enteral feeding as an intervention strategy and had a retrospective observational design. Overall, included studies reported positive change in nutritional status and a high incidence of adverse events following enteral feeding initiation. Risk of bias was high with variability in methodological quality. The safety and effectiveness of interventions for feeding and swallowing in adults with ID is unclear. This review highlights the lack of evidence-based practice in this area. Directions for further research are provided. Before enteral feeding initiation, risks and benefits should be appropriately balanced on an individual basis, and caregivers should be involved in the decision-making process.