Cancer-related pain in head and neck cancer survivors: longitudinal findings from the Head and Neck 5000 clinical cohort.

PURPOSE: Reports suggest pain is common in head and neck cancer (HNC). However, past studies are limited by small sample sizes and design and measurement heterogeneity. Using data from the Head and Neck 5000 longitudinal cohort, we investigated pain over a year post-diagnosis. We assessed: temporal trends; compared pain across HNC treatments, stages, sites and by HPV status; and identified subgroups of patients at increased risk of pain. METHODS: Sociodemographic and clinical data and patient-reported pain (measured by EORTC QLQ-C30 and QLQ-H&N35) were collected at baseline (pre-treatment), 4- and 12- months. Using mixed effects multivariable regression, we investigated time trends and identified associations between (i) clinically-important general pain and (ii) HN-specific pain and clinical, socio-economic, and demographic variables. RESULTS: 2,870 patients were included. At baseline, 40.9% had clinically-important general pain, rising to 47.6% at 4-months and declining to 35.5% at 12-months. HN-specific pain followed a similar pattern (mean score (sd): baseline 26.4 (25.10); 4-months. 28.9 (26.55); 12-months, 17.2 (19.83)). Across time, general and HN-specific pain levels were increased in: younger patients, smokers, and those with depression and comorbidities at baseline, and more advanced, oral cavity and HPV negative cancers. CONCLUSIONS: There is high prevalence of general pain in people living with HNC. We identified subgroups more often reporting general and HN-specific pain towards whom interventions could be targeted. IMPLICATIONS FOR CANCER SURVIVORS: Greater emphasis should be placed on identifying and treating pain in HNC. Systematic pain screening could help identify those who could benefit from an early pain management plan.

Patient experience of telehealth appointments in head and neck cancer services during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic resulted in rapid changes to head and neck cancer (HNC) services. Multidisciplinary team (MDT) face-to-face appointments were converted to telehealth appointments (telephone and video-call) to reduce the risk of COVID-19 transmission. The literature exploring HNC patient experience of these appointment types is limited. AIMS: To explore patient experience of telehealth appointments at one UK centre during the COVID-19 pandemic, as well as the variables that may influence patient preference for virtual or face-to-face appointments. METHODS & PROCEDURES: A survey-based study design was used, with closed questions and open text options to capture the views of the participants. Quantitative data were analysed using descriptive statistics. Open text data was used to add depth to the findings. OUTCOMES & RESULTS: A total of 23 participant surveys were returned. Six categories were identified: Usability; Information receiving & giving; Satisfaction; Emotions and comfort; Rapport; and Travel time and cost. Overall, participants gave positive responses to each category and indicated that telehealth appointments met their needs. Areas for clinical consideration are highlighted. Variables such as age, travel distance from hospital site, fear of COVID-19 and information technology (IT) access did not appear to influence patient preference for appointment type. CONCLUSIONS & IMPLICATIONS: Going forward, telehealth may be considered for use in combination with face-to-face appointments in the HNC pathway. Areas for further development include a 'telehealth screening tool' that may help to identify those patients most appropriate for these appointment types, or who require support to access them. WHAT THIS PAPER ADDS: What is already known on this subject The COVID-19 pandemic resulted in major disruption to HNC centres across the world. Services adapted to meet the needs of patients with many implementing telehealth into pathways. Studies exploring telehealth in speech and language therapy (SLT) services with the HNC population indicate positive results. It is clear telehealth has a role in modern healthcare and should not be viewed as a temporary solution to the pandemic. It is, however, recognized that embedding telehealth into pathways is not straightforward and requires ongoing review and evaluation, which includes patient and clinician perceptions. What this study adds to the existing knowledge The service evaluation gives insight into HNC patient experience of telehealth appointments for MDT clinics (led by SLT, dietician and clinical nurse specialist) during the COVID-19 pandemic. Overall, patients report a positive experience of telehealth in the HNC pathway and are willing to accept this platform into their healthcare. Areas for clinical consideration are highlighted. What are the actual and clinical implications of this work? This findings of this service evaluation can be used to support the co-design of HNC pathways which embed telehealth as an option for patients. Areas that were important to the participants are highlighted; this includes the timing of telehealth appointments in the pathway, the need to meet the MDT face to face and the positive benefit of cost savings. The authors suggest a telehealth appointment screening tool as an area for future development.

Cancer-Related Fatigue in Head and Neck Cancer Survivors: Longitudinal Findings from the Head and Neck 5000 Prospective Clinical Cohort.

Cancer-related fatigue (CRF) is a common side-effect of cancer and its treatments. For head and neck cancer (HNC), CRF may exacerbate the symptom burden and poor quality-of-life. Using data from the Head and Neck 5000 prospective clinical cohort, we investigated clinically important CRF over a year post-diagnosis, assessing temporal trends, CRF by HNC site and treatment received, and subgroups at higher risk of CRF. Recruitment was undertaken in 2011-2014. Socio-demographic and clinical data, and patient-reported CRF (EORTC QLQ-C30 fatigue subscale score ≥39 of a possible 100) were collected at baseline (pre-treatment) and 4- and 12- months post-baseline. Mixed-effects logistic multivariable regression was used to investigate time trends, compare cancer sites and treatment groups, and identify associations between clinical, socio-demographic and lifestyle variables and CRF. At baseline, 27.8% of 2847 patients scored in the range for clinically important CRF. This was 44.7% at 4 months and 29.6% at 12 months. In the multivariable model, after adjusting for time-point, the odds of having CRF over 12 months were significantly increased in females and current smokers; those with stage 3/4 disease, comorbidities and multimodal treatment; and those who had depression at baseline. The high prevalence of clinically important CRF indicates the need for additional interventions and supports for affected HNC patients. These findings also identified patient subgroups towards whom such interventions could be targeted.

Development of the remote 100 ml water swallow test versus clinical assessment in patients with head and neck cancer: Do they agree?

BACKGROUND: The 100 ml water swallow test (WST) is a validated swallow assessment used in head and neck cancer (HNC). We aimed to determine the level of agreement when completing the 100 ml WST via clinician-graded video-testing or patient self-testing compared to standard face-to-face assessment (FTF). METHODS: Convenience sampling from four UK centers. INCLUSION CRITERIA: patients with HNC treated with any modality prior to, or within 5 years of treatment. Participants were recruited to complete the 100 ml WST by video-testing or self-testing and compared with FTF. RESULTS: Sixty-three patients were recruited; 1 was unable to perform the task; 30 in video-testing; and 32 in self-testing. There was no difference in swallow capacity (p = 0.424) and volume (p = 0.363) for the video-testing or the self-testing swallow capacity (p = 0.777) and volume (p = 0.445). CONCLUSIONS: This study demonstrates that video-testing and self-testing are reliable methods of completing the 100 ml WST for this sample of patients with HNC.

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.

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.

Trends in, and predictors of, swallowing and social eating outcomes in head and neck cancer survivors: A longitudinal analysis of head and neck 5000.

OBJECTIVE: To investigate the recovery trajectory and predictors of outcome for swallowing difficulties following head and neck cancer treatment in a large prospective cohort. MATERIALS AND METHODS: Data from 5404 participants of the Head and Neck 5000 study were collected from 2011 to 2014. Patient-reported swallowing was measured using the EORTC HN35, recorded at baseline (pre-treatment) and 4 and 12 months post-baseline. Mixed-effects linear multivariable regression was used to investigate time trends, compare cancer sites, and identify associations between clinical, socio-demographic and lifestyle variables. RESULTS: 2458 participants with non-recurrent oral (29%) oropharyngeal (46%) and laryngeal (25%) cancer were included in the analysis. There was a clinically significant deterioration in scores between baseline and four months for swallowing (11.7 points; 95% CI 10.7-12.8) and trouble with social eating (17.9 points; 95% CI 16.7-19.2), but minimal difference between baseline and 12 months. Predictors of better swallowing and social eating were participants with larynx cancer, early-stage disease, treatment type, age, gender, co-morbidity, socio-economic status, smoking behaviour and cohabitation. CONCLUSION: Swallowing problems persist up to a year after head and neck cancer treatment. These findings identify disease and demographic characteristics for particularly vulnerable groups, supporting the need for holistic interventions to help improve swallowing outcomes. People diagnosed with head and neck cancer at risk of severe eating and drinking problems following treatment can be identified earlier in the pathway, receive more accurate information about early and late post-treatment side-effects, which can inform shared decision-making discussions.

Development and reliability of the revised Patterson Edema Scale.

OBJECTIVE: The Patterson Edema scale was developed in 2007 to address the lack of a reliable, sensitive scale to measure laryngeal and pharyngeal oedema in patients with head and neck cancer. The objective of this study was to revise the existing Patterson scale to improve its reliability and utility. DESIGN: Prospective investigation. SETTING: Academic medical center. PARTICIPANTS: Speech-Language Pathologists, Otolaryngologists, and Radiation Oncologists. MAIN OUTCOME MEASURES: Ratings using the Revised Patterson Edema Scale. METHODS: A consensus group reviewed existing literature regarding the performance of the original Patterson scale and revised the existing scale in regard to items to be included and descriptors for each severity level. The scale was then utilised by 18 speech language pathologists from the US and UK with >2 years-experience working with dysphagia and dysphonia with endoscopy. Each SLP rated a total of eight parameters (epiglottis, vallecula, pharyngoepiglottic folds, aryepiglottic folds, arytenoids, false vocal folds, true vocal folds and pyriform sinuses) using the Revised Patterson Edema Scale. Feedback was solicited from raters regarding areas where clarity was lacking for further scale revision. Scale revisions were completed and additional ratings were completed by otolaryngologists, radiation oncologists and less experienced SLP providers to establish reliability across disciplines. Quadratic weighted Kappa values were obtained to establish interrater reliability. RESULTS: Feedback received from raters included suggestions for clarification of how to rate unilateral oedema, use of a standard task battery to visualise and rate structures consistently, and clarification of true vocal fold oedema rating parameters. Overall interrater reliability was established using quadratic weighted Kappa with good agreement noted for the epiglottis, vallecula, arytenoids and false vocal folds; moderate agreement noted for aryepiglottic folds, pharyngoepiglottic folds and pyriform sinuses; and fair agreement noted for true vocal folds. CONCLUSIONS: The Revised Patterson Edema Scale demonstrates moderate-substantial interrater reliability for most parameters across multiple disciplines and experience levels, with the exception of the true vocal folds where agreement was fair. We believe the Revised Patterson Oedema Scale provides a reliable tool for clinicians and researchers to rate oedema in the supraglottic larynx and pharynx following treatment for head and neck cancer.

Enhanced recovery after head and neck cancer surgery: a review of current literature.

PURPOSE OF REVIEW: Enhanced recovery after surgery (ERAS) is well documented in a number of surgical specialities. However, it remains an emerging concept in surgical head and neck cancer care. The purpose of this review is to appraise the current evidence investigating enhanced recovery in head and neck cancer, and explore areas for future clinical research. RECENT FINDINGS: There were three key themes in enhanced recovery from the current head and neck cancer literature: early oral feeding, fistula closure and service delivery. This evidence is emerging and the quality of papers remains variable which makes it difficult to draw robust clinical recommendations. However, there are some encouraging clinical findings with regards to early oral feeding protocols and suturing of the trachea-stoma. SUMMARY: There is limited literature in enhanced recovery in head and neck cancer, with questionable quality of the papers reviewed. As such, there is no consensus for a standardized enhanced recovery pathway which demonstrates effective service delivery and positive patient outcomes. It is clear that implementation of enhanced recovery pathways is complex and requires patient and clinician buy in. Future research should focus on co-design of a methodologically sound enhanced recovery pathway with evaluation of its implementation.