Psychosocial impacts of being nil-by-mouth as an adult: A scoping review.

AIM: To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult. DESIGN: A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR). METHODS: A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions. RESULTS: A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood. CONCLUSION: Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. WHAT IS KNOWN ABOUT THIS TOPIC?: Eating and drinking provides more than nutrition and hydration. A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth). Being nil by mouth (NBM) for short periods such as pre-operative fasting causes distress; however, little is understood about impact on longer-term abstinence from eating and drinking. WHAT THIS PAPER ADDS?: Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies. Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation. Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM.

A review of unplanned admissions in head and neck cancer patients undergoing oncological treatment.

AIM: Non-surgical treatment for head and neck cancer (HNC) often results in severe toxicities, which are detrimental to a patient's health and quality of life. There is limited published UK data on unplanned hospital admissions and reasons associated with admission. We aim to identify frequencies and reasons for unplanned hospital admissions, highlighting those patient groups who are most vulnerable. METHODS: A retrospective study of unplanned hospital admissions of HNC patients receiving non-surgical treatment was completed. An inpatient admission was defined as ≥ 1 night spent in the hospital. To test potential demographic and treatment predictors of inpatient admission, a multiple regression model was constructed using the endpoint measure (unplanned admission), as the dependent variable. RESULTS: A cohort of 216 patients was identified over a 7-month period, and 38 of these patients (17%) required an unplanned admission. Treatment type was the only statistically significant predictor of in-patient admission. The majority of admissions were patients receiving chemoradiotherapy (CRT) (58%) with predominant reasons for admission being nausea and vomiting (25.5%) and decreased oral intake/dehydration (30%). Of the patients admitted, 12 had a prophylactic PEG placed pre-treatment, and 18 of 26 admitted without prophylactic PEG required nasogastric tube feeding during their admission. DISCUSSION: Almost one-fifth of HNC patients over this time period required hospital admission; the majority of which can be attributed to treatment toxicities when receiving CRT. This is concurrent with other studies which review the impact of radiotherapy versus CRT. Increased support and monitoring, particularly focused on nutrition, are required for patients with HNC who receive CRT. KEY MESSAGE: This article describes a retrospective review of a patient undergoing non-surgical treatment for head and neck cancer. These patients frequently require unplanned hospital admission. The results indicate that patients undergoing (chemo)radiotherapy are most vulnerable to deterioration and additional support focused on nutrition for these patients is indicated.

Barriers to and facilitators of physical activity in adults living with and beyond cancer, with special emphasis on head and neck cancer: a systematic review of qualitative and mixed methods studies.

PURPOSE: Physical activity can improve health outcomes for cancer patients; however, only 30% of patients are physically active. This review explored barriers to and facilitators of physical activity promotion and participation in patients living with and beyond cancer. Secondary aims were to (1) explore similarities and differences in barriers and facilitators experienced in head and neck cancer versus other cancers, and (2) identify how many studies considered the influence of socioeconomic characteristics on physical activity behaviour. METHODS: CINAHL Plus, MEDLINE, PsycINFO, Scopus and Cochrane (CDSR) were searched for qualitative and mixed methods evidence. Quality assessment was conducted using the Mixed Methods Appraisal Tool and a Critical Appraisal Skills Programme Tool. Thematic synthesis and frequency of reporting were conducted, and results were structured using the Capability-Opportunity-Motivation-Behaviour model and Theoretical Domains Framework. RESULTS: Thirty qualitative and six mixed methods studies were included. Socioeconomic characteristics were not frequently assessed across the included studies. Barriers included side effects and comorbidities (physical capability; skills) and lack of knowledge (psychological capability; knowledge). Having a dry mouth or throat and choking concerns were reported in head and neck cancer, but not across other cancers. Facilitators included improving education (psychological capability; knowledge) on the benefits and safety of physical activity. CONCLUSION: Educating patients and healthcare professionals on the benefits and safety of physical activity may facilitate promotion, uptakeand adherence. Head and neck cancer patients experienced barriers not cited across other cancers, and research exploring physical activity promotion in this patient group is required to improve physical activity engagement.

Healthcare Professionals' Perceptions of Stabilized Edible Foam with Adults with Severe Dysphagia; an exploratory study: Use of stabilized edible foam with adults with dysphagia: Use of stabilized edible foam with adults with dysphagia.

BACKGROUND: Improving the quality of life for individuals with severe dysphagia is a priority when considering new areas of dysphagia management, especially if this increases opportunities to participate in social activities associated with eating and drinking. Edible foam is widely researched and available in the food industry; however, the use of edible foam within the field of dysphagia remains unexplored. Despite no research published on effectiveness and safety, a commercial product currently on the market is widely distributed across both Europe and the UK, including 28 NHS Trusts, suggesting that it is increasingly being used in clinical practice. AIMS: To explore the perceptions and experiences of healthcare professionals on the use of stabilized edible foam (SEF) with adults with severe dysphagia in order to inform areas for future research in this novel dysphagia intervention. METHODS & PROCEDURES: Healthcare professionals were recruited using purposeful sampling and snowballing technique. A total of 56 healthcare professionals were initially approached, of which 10 completed the semi-structured interviews. Interview questions were developed from a topic guide and a pilot questionnaire. OUTCOMES & RESULTS: Thematic analysis was used to identify three themes: potential impact, consideration of risk and perceived experiences. Overarching each of these themes was the element of the unknown. CONCLUSIONS & IMPLICATIONS: Use of SEF with adults with dysphagia is in its infancy. Whilst results indicate that some clinicians are embracing this novel approach, others express concerns. Therefore, further research is needed, particularly in relation of direct experience of individuals and contra-indications. WHAT THIS PAPER ADDS: What is already known on the subject The use of SEF with individuals with swallowing problems is a relatively novel area of dysphagia intervention in the UK. There are currently no published studies on its effectiveness and safety profile. What this paper adds to existing knowledge This study provides valuable preliminary work into the area of SEF and adults with severe dysphagia, capturing the experience and perceptions of healthcare professions who have an awareness of SEF. What are the potential or actual clinical implications of this work? Increasing clinicians and researcher's awareness of this novel area of dysphagia management.

Screening for silent aspiration in hyperacute stroke: A feasibility study of clinical swallowing examination and cough reflex testing.

BACKGROUND: Silent aspiration (SA) is common post-stroke and associated with increased risk of pneumonia, length of stay and healthcare costs. Clinical swallow examinations (CSEs) are unreliable measures of SA. There is no consensus on the clinical components that best detect SA. Cough reflex testing (CRT) is an alternative/adjunct whose SA detection accuracy also lacks consensus. AIMS: To investigate the feasibility of CSE versus CRT against gold standard flexible endoscopic evaluation of swallowing (FEES) for SA identification and to estimate its prevalence in a hyperacute stroke setting. METHODS & PROCEDURES: A single-arm preliminary, prospective, feasibility study of patients less than 72 h post-stroke, over a 31-day period on a hyperacute stroke unit: the Royal Victoria Infirmary, Newcastle-upon-Tyne, UK. Ethical approval for the study was obtained. The study tested the feasibility and acceptability of introducing CRT and developing a standardized CSE. Consent/assent was obtained for all participants. Patients unfit for study were excluded. OUTCOMES & RESULTS: A total of 62% of patients less than 72 h post-stroke (n = 61) were eligible. A total of 75% of those approached (n = 30) consented. A total of 23 patients completed all tests. The principal barrier was anxiety regarding FEES. Mean test time for CRT = 6 min; CSE = 8 min; FEES = 17 min. Patients rated CRT and FEES on average as moderately uncomfortable. A total of 30% (n = 7) of participants who received FEES presented with SA. CONCLUSIONS & IMPLICATIONS: CRT, CSE and FEES are feasible in 58% of hyperacute stroke patients in this setting. FEES anxiety is the main recruitment barrier and is not always well tolerated. Results support further work to establish optimum methods and differential sensitivity/specificity of CRT and CSE in hyperacute stroke for SA identification. WHAT THIS PAPER ADDS: What is already known on this subject SA significantly increases the risk of pneumonia in the early days post-stroke. CSEs are unreliable for identification of SA risk in this population. CRT is gaining popularity as a potential tool to identify stroke patients at risk of SA, though there are questions regarding the efficacy of the clinical protocol currently being used in the UK. What this study adds to existing knowledge This study demonstrates that it is practical and feasible to carry out a larger scale study in this setting to compare CSE and CRT including a consideration of an approach combining both methods for clinical identification of SA versus FEES. Preliminary findings suggest that CSE may have higher levels of sensitivity than CRT for SA identification. What are the potential or actual clinical implications of this work? The results of this study suggest that further work is needed to establish the optimum methods and differential sensitivity/specificity of clinical tools for SA detection in hyperacute stroke.

Treatment priorities and regret in older adults with head and neck cancer: A systematic review.

BACKGROUND: The majority of head and neck cancer (HNC) diagnoses are seen in people aged 70 and older; these numbers are set to increase. Greater understanding of treatment needs of older patients with HNC is essential. These older patients often have co-existing health conditions, are prone to frailty and may not prioritise survival when considering treatment options. This systematic review examines the current research with regard to priorities and factors influencing treatment regret in older people with HNC. METHODS: Studies were eligible for inclusion if they (i) reported data from patients with a mean age of 65 years or older who had a confirmed diagnosis of HNC and had been treated using surgery, chemotherapy and/or radiotherapy with either palliative or curative intent, (ii) considered patient's priorities or preferences or examined treatment regret as one of the primary outcomes of the study (iii) were published in English. RESULTS: Pilot search identified n = 7222 articles; however, following screening, only four papers met the inclusion criteria. Narrative synthesis was indicated to analyse quantitative and qualitative evidence in parallel, as meta-analyses were not possible. DISCUSSION: There is a paucity in the literature examining older adults with HNC. There is an indication that older adults prioritise maintaining independence when making treatment decisions and treatment regret is seen in those with high levels of depression with level of frailty also a contributing factor. Clinicians should consider patient's social circumstances, premorbid status and priorities in maintaining independence and managing symptoms when making treatment decisions in this cohort.

Associations between markers of social functioning and depression and quality of life in survivors of head and neck cancer: Findings from the Head and Neck Cancer 5000 study.

OBJECTIVE: To investigate associations between markers of social functioning (trouble with social eating and social contact), depression and health-related quality of life (QOL) among head and neck cancer survivors. METHODS: This cross-sectional analysis included individuals with oral cavity, oropharynx, larynx, salivary gland and thyroid cancers from Head and Neck 5000 alive at 12 months. Trouble with social eating and social contact were measured using items from EORTC QLQ-H&N35 and QOL using EORTC QLQ-C30; responses were converted into a score of 0-100, with a higher score equalling more trouble or better QOL. A HADS subscale score of ≥8 was considered significant depression. Associations between tertiles of trouble with social eating and social contact and depression and QoL were assessed using multivariable logistic and linear regression (with robust errors), respectively. RESULTS: Of 2561 survivors, 23% reported significant depression. The median QOL score was 75.0 (interquartile range 58.3-83.3). For trouble with social eating, after confounder adjustment, those in the intermediate and highest tertiles had higher odds of depression (intermediate: OR = 4.5, 95% CI 3.19-6.45; high: OR = 21.8, 15.17-31.18) and lower QOL (intermediate:ß = -8.7, 95% CI -10.35 to -7.14; high: ß = -24.8, -26.91 to -22.77). Results were similar for trouble with social contact. CONCLUSION: We found strong clinically important associations between markers of social functioning and depression and QOL. More effective interventions addressing social eating and contact are required. These may help survivors regain their independence, reduce levels of isolation and loneliness, and depression, and improve QOL outcomes generally.

Nutritional prehabilitation in head and neck cancer: a systematic review.

PURPOSE: Prehabilitation affords an opportunity to support the management of malnutrition that is strongly associated with head and neck cancer. The purpose of this systematic review was to identify the components of nutritional prehabilitation interventions and their effects on nutritional and health outcomes in head and neck cancer patients. METHODS: A comprehensive search was completed within Medline (including PubMed), CINHAL, Cochrane database, EMBASE, PRoQUEST, clinical trials registries, and grey literature to identify studies involving a nutritional intervention pre-treatment in head and neck cancer patients receiving any form of curative therapy. Nutritional intervention was defined as a specified period pre-treatment and outcome measures had to include assessment of nutritional status or body composition. Quality of included studies was assessed using Cochrane risk of bias 2. RESULTS: From 557 identified studies, two met the inclusion criteria. Due to the low number of studies, a meta-analysis was not indicated. Both studies conducted a nutritional intervention using an "enriched formula" in malnourished patients prior to surgery. Neither study reported the intervention was effective for reducing weight loss, physical function, surgical complications, or length of stay versus the comparison. CONCLUSION: There is limited nutritional prehabilitation research within head and neck cancer. An "enriched formula" provided in the prehabilitation period appears no more advantageous than routine standard nutritional formula in mitigating against the weight loss experienced in malnourished head and neck patient. Due to the malnutrition risks on diagnosis and the negative impact of poor nutritional status on clinical and functional outcomes, robust nutritional prehabilitation research is required to inform clinical practice.

Oropharyngeal swallowing physiology and safety in patients with Idiopathic Pulmonary Fibrosis: a consecutive descriptive case series.

INTRODUCTION: Dysphagia occurs in multiple respiratory pathophysiologies, increasing the risk of pulmonary complications secondary to aspiration. Reflux associated aspiration and a dysregulated lung microbiome is implicated in Idiopathic Pulmonary Fibrosis (IPF), but swallowing dysfunction has not been described. We aimed to explore oropharyngeal swallowing in IPF patients, without known swallowing dysfunction. METHODS: Fourteen consecutive outpatients with a secure diagnosis of IPF were recruited and the 10-item Eating Assessment Tool (Eat 10) used to assess patient perception of swallowing difficulty. Oropharyngeal swallowing was assessed in ten patients using Videofluoroscopy Swallow Studies (VFSS). The studies were rated using validated scales: Penetration-Aspiration Scale (PAS); standardised Modified Barium Swallow Impairment Profile (MBSImP). RESULTS: EAT-10 scores indicated frank swallowing difficulty in 4/14 patients. Videofluoroscopy Studies showed that 3/10 patients had airway penetration, and one aspirated liquid without a cough response. Median MBSImp for oral impairment was 5, range [3-7] and pharyngeal impairment 4, range [1-14] indicating, overall mild alteration to swallowing physiology. CONCLUSION: We conclude that people with IPF can show a range of swallowing dysfunction, including aspiration into an unprotected airway. To our knowledge, this is the first report on swallowing physiology and safety in IPF. We believe a proportion of this group may be at risk of aspiration. Further work is indicated to fully explore swallowing in this vulnerable group.

Psychometric Properties of the MDADI-A Preliminary Study of Whether Less is Truly More?

The MD Anderson Dysphagia Inventory (MDADI) is a 20-item dysphagia-specific QOL questionnaire with four subscales: global, emotional, functional, and physical. It is widely used in clinical practice and in research; however, its psychometric properties have been under-researched. We aim to evaluate the organisation of the MDADI subscales and identify any redundant items. The MDADI is a routinely collected outcome measure at two centres in northeast England. Questionnaires completed at three months following treatment were extracted from these existing databases. Factor analysis was carried out with the aim of reducing redundancy among the set of questionnaire items. Cases with missing values were excluded. A total of 196 complete patient questionnaires were used in factor analysis. A one-factor model accounted for around 50% of the total variance in item responses. The top five endorsed items (abbreviated by the questionnaire item keywords: Excluded, Irritate, Esteem, Social, and Why) in this one factor appeared in three (emotional, functional, and physical) of the four supposed MDADI subscales, i.e. global, emotional, functional, and physical. Our results suggest an overlap of three MDADI subscales across the top five endorsed items. The content of the top five questions all appear related to the psychosocial aspects of swallowing. This implies some redundancy of the items in the original subscales of the questionnaire. Using the most endorsed items, it appears feasible to abbreviate the 20-item MDADI questionnaire to a 5-item "MiniDADI" questionnaire, which is likely to have greater utility in routine clinical practice outside of research settings.

Patient experience of the acute post-surgical period following total laryngectomy during the COVID-19 era.

BACKGROUND: Total laryngectomy (TL) results in permanent functional changes requiring rapid development of complex new skills. A significant portion of this learning happens in the acute post-surgical stage. There is increasing interest in enhanced recovery after surgery (ERAS) protocols in TL; however, implementation has been difficult. COVID-19 has placed significant pressures on acute services, requiring rapid service changes for TL patients. AIMS: To understand the acute patient experience of having a TL both before and during COVID-19. METHODS & PROCEDURES: Semi-structured interviews using a pre-designed topic guide were conducted with 10 people who had undergone a TL within the last 2 years. Participants were recruited by their speech and language therapists using purposive sampling. Braun and Clarke's iterative approach to data collection and thematic analysis was used to generate key themes from the data. OUTCOMES & RESULTS: Thematic analysis identified four main themes: (1) pre-operative information-giving: 'it was just words'; (2) decision-making influences: 'I just wanted them to get it all out and get it over with'; (3) coping with adjustment to the new normal: 'this is part of me now'; and (4) the importance of relationship-building: 'when you've had something like this, you need some care and understanding'. CONCLUSIONS & IMPLICATIONS: The need for an individualized approach to TL intervention which incorporates medical and psycho-social approaches from pre-treatment to acute discharge is vital. ERAS models should be reviewed to shift beyond the medical model alone. Rapid service changes due to COVID-19 did not contribute any major changes to the acute patient-reported experience. WHAT THIS PAPER ADDS: What is already known on the subject We know that ERAS protocols have the potential to improve patient outcomes following TL. However, the research does not consider anything other than the early oral feeding debate and it has therefore been difficult to implement ERAS protocols in current service models. COVID19 required head and neck cancer services to make quick changes to surgical pathways, with the potential that some ERAS protocols had been adopted inadvertently. In order to understand the impact of this, we need to understand the patient experience following TL both before and during COVID19. What this paper adds to existing knowledge This paper used qualitative interviews to understand the acute patient experience following TL both during and before COVID19. Findings from these interviews highlighted that people were on the most part, well prepared for the functional changes they would experience after surgery. However, people felt there were gaps in service delivery at the pre-treatment and early discharge home period. Overall, the gaps identified were from a more psycho-social need suggesting that future ERAS models of care should consider both medical and psycho-social principles to enhance patient experience and outcome. What are the potential or actual clinical implications of this work? Pre-treatment services provided to people who have a TL could be reviewed to help maximize long-term adjustment to life. Areas which could be reviewed include the method and mode of information delivery. Further work needs to be done in partnership with community services to improve the immediate discharge home experience.

Shielding, hospital admission and mortality among 1216 people with total laryngectomy in the UK during the COVID-19 pandemic: A cross-sectional survey from the first national lockdown.

BACKGROUND: People with a total laryngectomy (PTL) rely on a permanent opening in their neck (stoma) to breathe. This altered anatomy may increase susceptibility to contracting and transmitting SARS-CoV-2. AIMS: To report on (1) the frequency and characteristics of PTL who tested positive for COVID-19, (2) the receipt of advice regarding shielding and patient self-reports of shielding, (3) hospital admissions and length of stay, and (4) mortality rates in this group during the first UK national lockdown. METHODS & PROCEDURES: This is a cross-sectional survey and case note review. National Health Service (NHS) centres providing care to PTL were invited to participate via the Royal College of Speech and Language Therapists' (RCSLT) Head & Neck Clinical Excellence Networks and through social media. PTL were reviewed by their speech and language therapist either in person or via telehealth between 30 March and 30 September 2020. Data were collected within the time frame covered by the Control of Patient Information (COPI) notice issued for COVID-19 and included information on COVID-19 testing, shielding, hospital admissions, length of stay and deaths. Information was submitted to the lead NHS site using a custom designed data-capture worksheet. Analysis was performed using descriptive statistics, including proportions and frequency counts. Pearson's Chi squared tests were used to compare categorical data using a 5% significance level. OUTCOMES & RESULTS: Data were obtained from 1216 PTL from 26 centres across the UK. A total of 81% were male; mean age was 70 years (28-97 years). Of the total group, 12% received a COVID-19 test. A total of 24 (2% of total sample) tested positive for COVID-19. Almost one-third of PTL (32%) received a government letter or were advised to shield by a healthcare professional. During the data collection time frame, 12% had a hospital admission (n = 151) with a median length of stay of 1 day (1-133 days), interquartile range (IQR) = 17 days. A total of 20 of these admissions (13%) had tested positive for COVID-19 with a median length of stay of 26 days, IQR = 49 days. The overall mortality was 4% (41 patients), with eight deaths occurring within 28 days of testing positive for COVID-19. CONCLUSIONS & IMPLICATIONS: This study highlighted the lack of routine national data for neck-breathers with which to compare the current findings. Greater testing in the community is necessary to understand the prevalence of COVID-19 in PTL and if this group is indeed more susceptible. The potential for nasopharyngeal and tracheal aspirates to show differing results when testing for COVID-19 in neck-breathers requires further investigation. WHAT THIS PAPER ADDS: What is already known on the subject? People with total laryngectomy (PTL) have an altered anatomy for breathing and speaking. The presence of a neck stoma poses an additional virus entry point aside from the nose, mouth and conjunctiva. This could increase the susceptibility to COVID-19 for PTL. What this paper adds? This is the first national audit to provide data on shielding, hospital admissions and mortality for patients with total laryngectomy in the UK over the pandemic. The overall mortality in PTL over the first lockdown did not appear to be higher than the "best case" estimates from previous years. However, one in three PTL who acquired COVID-19 and were admitted to hospital, died within 28 days of testing positive. These findings are relevant to the current care and management of PTL over the pandemic but also highlights important knowledge gaps. What are the potential or actual clinical implications of this work? This study highlights gaps in the collection of baseline information on hospital admissions, length of stay and mortality for people with laryngectomy in the UK, restricting comparisons between the current data and historical data. The need for further research on whether neck-breathers should be tested via both nasopharyngeal and tracheal aspirates is important not just currently, but also in case of any future respiratory epidemics.

COVID-19 and ENT SLT services, workforce and research in the UK: A discussion paper.

BACKGROUND: The COVID-19 pandemic and the UK government's subsequent coronavirus action plan have fundamentally impacted on every aspect of healthcare. One area that is severely affected is ear, nose and throat (ENT)/laryngology where speech and language therapists (SLTs) engage in a diverse range of practice with patients with a range of conditions, including voice disorders, airway problems, and head and neck cancers (HNCs). A large majority of these patients are in high-risk categories, and many specialized clinical practices are vulnerable. In addition, workforce and research issues are challenged in both the immediate context and the future. AIMS: To discuss the threats and opportunities from the COVID-19 pandemic for SLTs in ENT/laryngology with specific reference to clinical practice, workforce and research leadership. METHODS & PROCEDURES: The relevant sections of the World Health Organisation's (WHO) health systems building blocks framework (2007) were used to structure the study. Expert agreement was determined by an iterative process of multiple-group discussions, the use of all recent relevant policy documentation, and other literature and shared documentation/writing. The final paper was verified and agreed by all authors. MAIN CONTRIBUTION: The main threats to ENT/laryngology SLT clinical services include increased patient complexity related to COVID-19 voice and airway problems, delayed HNC diagnosis, reduced access to instrumental procedures and inequitable care provision. The main clinical opportunities include the potential for new modes of service delivery and collaborations, and harnessing SLT expertise in non-instrumental assessment. There are several workforce issues, including redeployment (and impact on current services), training implications and psychological impact on staff. Workforce opportunities exist for service innovation and potential extended ENT/SLT practice roles. Research is threatened by a reduction in immediate funding calls and high competition. Current research is affected by very limited access to participants and the ability to conduct face-to-face and instrumental assessments. However, research opportunities may result in greater collaboration, and changes in service delivery necessitate robust investigation and evaluation. A new national set of research priorities is likely to emerge. CONCLUSIONS & IMPLICATIONS: The immediate impact of the pandemic has resulted in major disruption to all aspects of clinical delivery, workforce and research for ENT/laryngology SLT. It is unclear when any of these areas will resume operations and whether permanent changes to clinical practice, professional remits and research priorities will follow. However, significant opportunity exists in the post-COVID era to re-evaluate current practice, embrace opportunities and evaluate new ways of working. What this paper adds What is already known on the subject ENT/laryngology SLTs manage patients with a range of conditions, including voice disorders, airway problems and HNCs. The diverse scope of clinical practice involves highly specialized assessment and treatment practices in patients in high-risk categories. A large majority of active research projects in this field are patient focused and involve instrumental assessment. The COVID-19 pandemic has created both opportunities and threats for ENT SLT clinical services, workforce and research. What this paper adds to existing knowledge This study provides a discussion of the threats and opportunities from the COVID-19 pandemic for ENT/laryngology SLT with specific reference to clinical practice, workforce and research leadership. What are the potential or actual clinical implications of this work? The COVID-19 pandemic has resulted in major disruption to all aspects of clinical delivery, workforce and research for ENT/laryngology SLT. Changes to clinical practice, professional remits and research priorities are of indeterminant duration at this time, and some components could be permanent. Significant clinical practice, workforce and research opportunities may exist in the post-COVID era.

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).

A combination of outcome measures are required to provide important information on the physiological profile and associated 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 meaningful 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.

DARS: a phase III randomised multicentre study of dysphagia- optimised intensity- modulated radiotherapy (Do-IMRT) versus standard intensity- modulated radiotherapy (S-IMRT) in head and neck cancer.

BACKGROUND: Persistent dysphagia following primary chemoradiation (CRT) for head and neck cancers can have a devastating impact on patients' quality of life. Single arm studies have shown that the dosimetric sparing of critical swallowing structures such as the pharyngeal constrictor muscle and supraglottic larynx can translate to better functional outcomes. However, there are no current randomised studies to confirm the benefits of such swallow sparing strategies. The aim of Dysphagia/Aspiration at risk structures (DARS) trial is to determine whether reducing the dose to the pharyngeal constrictors with dysphagia-optimised intensity- modulated radiotherapy (Do-IMRT) will lead to an improvement in long- term swallowing function without having any detrimental impact on disease-specific survival outcomes. METHODS/DESIGN: The DARS trial (CRUK/14/014) is a phase III multicentre randomised controlled trial (RCT) for patients undergoing primary (chemo) radiotherapy for T1-4, N0-3, M0 pharyngeal cancers. Patients will be randomised (1:1 ratio) to either standard IMRT (S-IMRT) or Do-IMRT. Radiotherapy doses will be the same in both groups; however in patients allocated to Do-IMRT, irradiation of the pharyngeal musculature will be reduced by delivering IMRT identifying the pharyngeal muscles as organs at risk. The primary endpoint of the trial is the difference in the mean MD Anderson Dysphagia Inventory (MDADI) composite score, a patient-reported outcome, measured at 12 months post radiotherapy. Secondary endpoints include prospective and longitudinal evaluation of swallow outcomes incorporating a range of subjective and objective assessments, quality of life measures, loco-regional control and overall survival. Patients and speech and language therapists (SLTs) will both be blinded to treatment allocation arm to minimise outcome-reporting bias. DISCUSSION: DARS is the first RCT investigating the effect of swallow sparing strategies on improving long-term swallowing outcomes in pharyngeal cancers. An integral part of the study is the multidimensional approach to swallowing assessment, providing robust data for the standardisation of future swallow outcome measures. A translational sub- study, which may lead to the development of future predictive and prognostic biomarkers, is also planned. TRIAL REGISTRATION: This study is registered with the International Standard Randomised Controlled Trial register, ISRCTN25458988 (04/01/2016).

Head and neck cancer patients' perceptions of swallowing following chemoradiotherapy.

PURPOSE: The study aims to describe patients' experiences of swallowing difficulties following (chemo)radiotherapy for head and neck cancer and to explore any changes over time. METHODS: A purposive sample of patients with swallowing difficulties was selected at a range of time points, from 3 to 18 months following treatment. Ethnographic observations of 12 patients were conducted in their own homes, over a mealtime situation. Nine new patients were interviewed about changes to their eating and drinking from pre- to post-treatment. Thematic analysis was used to code and analyse the data. RESULTS: Patients' reports of swallowing function were divided into four time zones: pre-treatment, during radiotherapy, early (0-3 months) and late (6-18 months) time points following treatment. The majority reported minimal problems at diagnosis, but marked impairment during and after radiotherapy, without a return to pre-treatment functioning. The focus was on severe physical side effects and changes to food preparation during radiotherapy and in the early phase of recovery. By 6 months, side effects began to subside, but swallowing was still difficult, leading to major changes to family life, socialisation and lifestyle. CONCLUSIONS: Swallowing problems after (chemo)radiotherapy are multi-faceted and highly individualised and restrict lives in the long term. Swallowing ability may improve in time, but does not appear to return to pre-treatment function. Further work is required to find ways of being able to best support patients living with this long-term condition.

An ethnography of mealtime care for people living with dementia in care homes.

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes.

The timed 100 mL water swallow test for patients with head and neck cancer: What constitutes a clinically significant difference?

OBJECTIVES: Swallowing function in patients with head and neck cancer (HNC) is often assessed pre-treatment, during and at intervals post-treatment to identify those with dysphagia as early as possible. This study aims to investigate the minimal clinical important difference (MCID) for the 100 mL water swallow test (100 mL WST) to increase its utility in clinical practice and in clinical trials. METHODS: Data from 211 HNC patients, treated by either single or combined modality were included. Patients completed both the 100 mL WST and M.D. Anderson Dysphagia Inventory (MDADI) at baseline (i.e., prior to treatment) and 12 months post-treatment. The MCID for the 100 mL WST was calculated using two approaches of the anchor-based method (using the MDADI), including mean change, and ROC curve. Additionally, the distribution-based method was used utilizing the half standard deviation approach. RESULTS: In the anchor-based method, a 4 mL/s in the 100 mL WST was defined as an MCID for deterioration, with a sensitivity of 75% and a 1-specificity of 46%. In contrast, a change of 5 mL/s was deemed as an MCID for improvement, based on the distribution-based method. CONCLUSION: The findings showed that deterioration of 4 mL, or an increase of 5 mL from baseline to 12 months post-HNC treatment equates to an MCID from the patients' perspective. Based on these findings, it may be beneficial to increase the utilization of the 100 mL WST in clinical practice to observe the changes, and in clinical trials to interpret and compare different study arms.

Primary mode of communication for people with total laryngectomy in the UK: a cross-sectional survey.

OBJECTIVE: This study aimed to report on the UK rate of surgical voice restoration usage and investigate the factors that influence its uptake. METHOD: A national multicentre audit of people with total laryngectomy was completed over a six-month period (March to September 2020) in response to the coronavirus disease 2019 pandemic. This study is a secondary analysis of the data collected, focusing on the primary communication methods used by people with total laryngectomy. RESULTS: Data on surgical voice restoration were available for 1196 people with total laryngectomy; a total of 852 people with total laryngectomy (71 per cent) used surgical voice restoration. Another type of communication method was used by 344 people. The factors associated with surgical voice restoration in the multiple regression analysis were sex (p = 0.003), employment (employed vs not employed, p < 0.001) and time post-laryngectomy (p < 0.001). CONCLUSION: This study provides an important benchmark for the current status of surgical voice restoration usage across the UK. It found that 71 per cent of people with total laryngectomy used surgical voice restoration as their primary communication method.

People, places, systems and society:A qualitative exploration of socio-cultural factors in head and neck cancer survivorship.

PURPOSE: People living with head and neck cancer (HNC) often endure permanent and life changing adverse effects of treatment and reduced health-related quality of life. Study of post-traumatic growth (PTG), is gaining traction to understand why some people living with cancer have better psychosocial outcomes than others. Current theoretical models on PTG point to the importance of 'socio-cultural influences' but do not provide insight into how such socio-cultural factors influence survivorship outcomes. This research aimed to illuminate pathways to PTG following HNC by exploring socio-cultural factors in experiences of living with, and moving on from, HNC. METHOD: Semi-structured interviews with people living with HNC (up to 5 years post-treatment) on experiences of diagnosis, treatment and recovery. Qualitative framework analysis using the environmental factors codes from the International Classification of Functioning, Disability and Health (ICF) HNC core set. RESULTS: 20 people living with HNC were interviewed (11 male, 9 female; aged 46-83 years). Four inter-related themes described socio-cultural factors that influence (positively and/or negatively) the experience of living with HNC: (1) people and places; (2) healthcare systems and support services; (3) societal attitudes to cancer; (4) work and finances. CONCLUSION: Support from family, friends and healthcare professionals, as well as societal attitudes, financial and work security and personal experiences all appear to contribute to an individuals' ability to navigate the HNC experience. These findings could inform development of interventions targeting the socio-cultural factors in the lives of people living with HNC, particularly for those at risk for poorer psycho-social outcomes.