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.

A protocol for the longitudinal investigation of cancer related fatigue in head and neck cancer with an emphasis on the role of physical activity.

BACKGROUND AND AIM: Cancer related fatigue significantly impairs the ability to undertake sustained physical activity across the domains of daily living, work and recreation. The purpose of this study is to monitor cancer related fatigue and the factors affected or caused by it for 12 months in head and neck cancer patients following their diagnosis. Their perceptions of how fatigue might affect their activity levels in addition to identifying avenues to improve engagement with physical activity will be also explored. METHODS: A single centre longitudinal mixed-methods study will be conducted. Forty head and neck cancer patients will be recruited over 6 months following the confirmation of their treatment plan, after which fatigue and physical activity will be assessed at four time points over 12 months. Additionally, other factors which influence fatigue such as body composition, blood counts, systemic inflammation levels, haemoglobin concentration, thyroid function, sleep quality, cardiorespiratory fitness and upper and lower extremity strength will be measured to understand how the multifactorial problem of fatigue may evolve over time and influence physical activity levels. Semi-structured interviews will be conducted after treatment completion and at end of twelve months which will analyse the participants fatigue experiences, understand how their perceived fatigue may have impacted physical activity and report the factors which may improve engagement with physical activity during cancer. Quantitative data will be analysed and reported using standard descriptive statistics and post-hoc pairwise comparisons. The changes in outcome measures across time will be analysed using the MIXED procedure in SPSS software. Statistical significance will be accepted at p<0.05. Qualitative data will be analysed using the Interpretative Phenomenological Approach using the NVivo software. DISCUSSION: The results from this study may help inform the planning and delivery of appropriately timed interventions for the management of cancer related fatigue.

Nomenclature of the symptoms of head and neck cancer: a systematic scoping review.

Introduction: Evolution of a patient-reported symptom-based risk stratification system to redesign the suspected head and neck cancer (HNC) referral pathway (EVEREST-HN) will use a broad and open approach to the nomenclature and symptomatology. It aims to capture and utilise the patient reported symptoms in a modern way to identify patients' clinical problems more effectively and risk stratify the patient. Method: The review followed the PRISMA checklist for scoping reviews. A search strategy was carried out using Medline, Embase and Web of Science between January 1st 2012 and October 31st 2023. All titles, abstracts and full paper were screened for eligibility, papers were assessed for inclusion using predetermined criteria. Data was extracted pertaining to the aims, type of study, cancer type, numbers of patients included and symptoms, presenting complaints or signs and symptoms. Results: There were 9,331 publications identified in the searches, following title screening 350 abstracts were reviewed for inclusion and 120 were considered for eligibility for the review. 48 publications met the eligibility criteria and were included in the final review. Data from almost 11,000 HNC patients was included. Twenty-one of the publications were from the UK, most were retrospective examination of patient records. Data was extracted and charted according to the anatomical area of the head and neck where the symptoms are subjectively and objectively found, and presented according to lay terms for symptoms, clinical terms for symptoms and the language of objective clinical findings. Discussion: Symptoms of HNC are common presenting complaints, interpreting these along with clinical history, examination and risk factors will inform a clinician's decision to refer as suspected cancer. UK Head and Neck specialists believe a different way of triaging the referrals is needed to assess the clinical risk of an undiagnosed HNC. EVEREST-HN aims to achieve this using the patient history of their symptoms. This review has highlighted issues in terms of what is considered a symptom, a presenting complaint and a clinical finding or sign.

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.

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.

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.

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.