Patient experiences of swallowing exercises after head and neck cancer:A qualitative study examining barriers and facilitators using behaviour change theory

Poor patient adherence to swallowing exercises is commonly reported in the dysphagia literature on patients treated for head and neck cancer. Establishing the effectiveness of exercise interventions for this population may be undermined by patient non-adherence. The purpose of this study was to explore the barriers and facilitators to exercise adherence from a patient perspective, and to determine the best strategies to reduce the barriers and enhance the facilitators. In-depth interviews were conducted on thirteen patients. We used a behaviour change framework and model [Theoretical domains framework and COM-B (Capability-opportunity-motivation-behaviour) model] to inform our interview schedule and structure our results, using a content analysis approach. The most frequent barrier identified was psychological capability. This was highlighted by patient reports of not clearly understanding reasons for the exercises, forgetting to do the exercises and not having a system to keep track. Other barriers included feeling overwhelmed by information at a difficult time (lack of automatic motivation) and pain and fatigue (lack of physical capability). Main facilitators included having social support from family and friends, the desire to prevent negative consequences such as long-term tube feeding (reflective motivation), having the skills to do the exercises (physical capability), having a routine or trigger and receiving feedback on the outcome of doing exercises (automatic motivation). Linking these findings back to the theoretical model allows for a more systematic selection of theory-based strategies that may enhance the design of future swallowing exercise interventions for patients with head and neck cancer

Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula

Background: Feeding difficulties are widely acknowledged following oesophageal atresia/tracheo-oesophageal fistula repair. However, little is understood about the nature and severity of these difficulties. This study explored feeding in children with oesophageal atresia/tracheo-oesophageal fistula from the parent perspective. Methods: In collaboration with a patient support group, data were collected using a research-specific online discussion forum. Thematic analysis was used to code the data and identify themes. Results: One hundred and twenty-seven parents registered for the online forum, of whom 83 (65%) provided demographic data. Seventy-four (89%) of responders were mothers, 75 (90%) were of white ethnicity, 65 (78%) were from the UK. Six key themes were identified: feeding is a traumatic experience, feeding my child is scary, feeding is isolating and filled with uncertainty, feeding outside of the home is difficult, feeding associated emotions, developing coping strategies. Parents described features of medical, nutritional, feeding skill and psychosocial dysfunction across all stages of eating/drinking development. They described how their child's feeding difficulties had an impacted their own well-being. An interactional model of feeding difficulties in OA/TOF is proposed. Conclusions: Exploring parent experiences provides rich data from which to expand understanding of the complex nature of feeding difficulties in OA/TOF. Feeding should be viewed as a dyadic process, occurring within a family system. Intervention for feeding difficulties should be family-centred, addressing parental anxiety, trauma and uncertainty, as well as the child's underlying medical/surgical needs to optimise outcome. Further study of clinical correlates with parental experience is required

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

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

BackgroundPeople 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.AimsTo 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 & proceduresThis 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 & resultsData 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 & implicationsThis 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 addsWhat 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

Utility of ultrasound in the assessment of swallowing and laryngeal function: A rapid review and critical appraisal of the literature

BACKGROUND: Ultrasound (US) is not widely used as part of the speech and language therapy (SLT) clinical toolkit. The COVID-19 pandemic has intensified interest in US as an alternative to SLT instrumental tools such as the videofluoroscopic swallowing study (VFSS), fibreoptic endoscopic evaluation of swallowing (FEES) and endoscopic evaluation of the larynx (EEL) as a non-invasive, non-aerosol-generating procedure that can be delivered at the bedside to assess swallowing and/or laryngeal function. To establish the appropriacy of routine US use, and in response to a national professional body request for a position statement, a group of expert SLTs conducted a rapid review of the literature. AIM: To explore critically the clinical utility of US as an assessment tool for swallowing and laryngeal function in adults. METHODS & PROCEDURES: A rapid review of four databases was completed to identify articles using US to assess swallowing and/or laryngeal function in adults compared with reference tests (VFSS/FEES/EEL/validated outcome measure). Screening was completed according to predefined inclusion/exclusion criteria and 10% of abstracts were rescreened to assess reliability. Data were extracted from full texts using a predeveloped form. The QUADAS-2 tool was used for quality ratings. Information from included studies was summarized using narrative synthesis and visual illustration. OUTCOMES & RESULTS: Ten papers used US to assess swallowing, and 13 to assess laryngeal function. All were peer-reviewed primary studies across a range of clinical populations and with a wide geographical spread. Four papers had an overall low risk of bias, but the remaining 19 had at least one domain where risk of bias was judged as high or unclear. Applicability concerns were identified in all papers. The papers that used US to assess swallowing varied widely in terms of the anatomical structures assessed and methodology employed. The papers assessing laryngeal function were more homogenous in their methodology. Sensitivity and specificity data were provided for 12 of the laryngeal function papers with ranges of 64.3–100% and 48.5–100%, respectively. CONCLUSIONS & IMPLICATIONS: There is burgeoning evidence to support the use of US as an adjunct to SLT clinical assessment of swallowing and laryngeal function. However, the current literature does not support its use as a tool in isolation. Further research is required to establish reliability in US assessment as well as clear SLT-driven protocols and training

European white paper : oropharyngeal dysphagia in head and neck cancer

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.Peer reviewe

Development and feasibility testing of a pre-treatment swallowing intervention package for patients with head and neck cancer

Dysphagia is a highly prevalent and significant problem affecting function and quality of life in patients treated for cancers of the mouth or throat. Based on available evidence, pre-treatment swallowing exercise interventions show promise in improving post-treatment swallowing outcomes for patients. Poor patient adherence undermines clinical trials of swallowing exercises. However, this behavioural issue has not been fully acknowledged in the design of previous interventions. This research aimed to devise an optimized pre-treatment swallowing intervention package, which was subsequently tested in a feasibility trial. A series of five sequential studies was undertaken to inform the development and feasibility of the new intervention. State-of-the-art behaviour change methods were employed to determine best strategies to improve patient adherence. Study 1, a systematic review, was conducted to identify the behavioural strategies used in swallowing exercise interventions and their association, if any, with intervention efficacy. In addition to core strategies used in most swallowing interventions, self-monitoring, social support, behavioural practice and delivery by a credible source were more prevalent in effective interventions. Study 2, a patient interview study, highlighted the key barriers and facilitators to patient adherence. Psychological capability was the greatest barrier, evidenced by patient reports of not fully understanding reasons for the exercises, forgetting, and not having a system to keep track. Social support, having a routine or trigger for exercises, and the desire to avoid tube feeds were key facilitators. Study 3, a think-aloud study, indicated that a swallowing video-animation was useful and acceptable to patients in improving understanding about swallowing, thus potentially beneficial for the new intervention. In Study 4, findings and insights from these studies were synthesized and combined with other essential components such as a swallowing assessment, to model the pre-treatment swallowing intervention package. Feedback from patients and clinicians informed the final content of the new intervention prior to its use in the feasibility randomized trial (Study 5). Key success criteria for feasibility were achieved. It is anticipated that the new intervention will proceed to testing in a small multi-centre pilot study

Helping Patients With Head and Neck Cancer Understand Dysphagia:Exploring the Use of Video-Animation

Purpose Patients newly diagnosed with head and neck cancer should be informed of the ramifications of cancer treatment on swallowing function during their pretreatment consultation. The purpose of this study was to explore (a) the usefulness and (b) the acceptability of video-animation in helping patients to understand the basics of the swallowing mechanism and dysphagia. Method Thirteen patients treated for head and neck cancer participated in this study. Think-aloud, a type of qualitative methodology, was used to encourage patients to verbalize their thoughts while watching two short video-animations showing the process of normal/abnormal swallowing. Transcripts were analyzed using thematic analysis. Results Four main themes were identified as follows: (a) patient interest and engagement, (b) acceptability of visual imagery and narration, (c) information provision and learning, and (d) personal relevance and intended action. Patients appeared interested and engaged in the video-animations, asking several spontaneous questions about how to maintain or improve swallowing function. Learning was evident from patients' recognition and verbalizations of grossly disordered swallowing patterns. Most patients reported the images to be visually acceptable and could often relate what they were seeing to their own swallowing experience. Many patients also verbalized recognition of the need to keep muscles active through exercises. Conclusions These results suggest that the video-animations of swallowing were acceptable, interesting, informative, and relevant for most patients. It was therefore useful not only as an education tool, but also showed potential to influence patients' intentions to undertake preventative interventions that may preserve better swallowing function after cancer treatment