The After Diagnosis Head and Neck cancer-specific Patient Concerns Inventory (HaNC-AD) as a pre-treatment preparation aid during the COVID-19 pandemic.

The coronavirus disease 2019 pandemic has resulted in new challenges for clinicians, head and neck cancer (HNC) patients and carers. There is evidence that the current crisis is affecting the management of HNC patients. Most healthcare systems have introduced remote consultations to decrease the risk of coronavirus infection to patients, carers and clinicians. At present, HNC patients may be anxious and due to logistical issues, may not be adequately prepared for their treatment. To ensure that patients have a thorough understanding of their treatment and expected outcome during the current COVID-19 crisis there may be merit in the use of the HaNC-AD PCI.

Quality of life, cognitive, physical and emotional function at diagnosis predicts head and neck cancer survival: analysis of cases from the Head and Neck 5000 study.

PURPOSE: The aim of this paper is to determine whether health-related quality of life (HRQOL) at diagnosis of head and neck cancer (HNC) is associated with overall survival following treatment with curative intent after adjusting for other factors. METHODS: Data were collected from 5511 participants of the Head and Neck 5000 study (HN5000). HRQOL was measured using the EORTC QLQ-C30. Questionnaire and covariate data were available from 2171 participants diagnosed as follows: oral cavity (655), oropharynx HPV+ (723) and HPV- (277), and larynx (516). On average, participants were followed up 3.2 years (SD 1.2) after diagnosis. Data were adjusted for age, gender, co-morbidity, intended treatment, education level, income from benefits, smoking status and alcohol consumption. RESULTS: There was a clinically meaningful difference between Global HRQOL scores at diagnosis and survival in an unadjusted and adjusted model: [HR = 0.86, CI 0.82-0.89, p < 0.001 (unadjusted) and HR = 0.90, CI 0.86-0.94, p < 0.001 (adjusted)]. In analyses stratified by tumour site and HPV status, this association was similarly noted before adjustment and persisted after. There were some tumour sub-site variations: improved survival for people with laryngeal cancer reporting higher levels of physical role or social functioning and people with oral cancer reporting higher levels of role or social functioning. CONCLUSION: As survival is the main priority for most people diagnosed with cancer, pre-treatment HRQOL is an additional factor to be included in risk stratification and case-mix adjustments. There is merit in incorporating HRQOL into routine clinical care as this is a useful facet in patient-clinician decision making, prognostication and recovery.

A review of question prompt lists used in the oncology setting with comparison to the Patient Concerns Inventory.

A question prompt list (QPL) is a simple and inexpensive communication tool used to facilitate patient participation in medical consultations. The QPL is composed of a structured list of questions and has been shown to be an effective way of helping ensure patients' individual information needs are appropriately met. This intervention has been investigated in a variety of settings but not specifically head and neck cancer (HNC). The aim of this paper was to perform a narrative review of literature reporting the use of a QPL for oncology patients and to draw comparison to the Patient Concerns Inventory (PCI-HN). The databases Scopus, PubMed and MEDLINE were searched using the key terms 'question prompt list', 'question prompt sheet', 'cancer' and 'oncology'. Of 98 articles hand searched, 30 of which were found to meet all inclusion criteria, and described in a tabulated summary. The studies concluded that the QPL was an effective intervention, enabling active patient participation in medical consultations. The PCI-HN is specific for HNC and differs from many QPLs, which are more general cancer tools. The QPL approach should prove to be a useful intervention for HNC sufferers, however further research into the clinical utility is required.

Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter.

Fear of cancer recurrence (FCR) is common among individuals treated for cancer. Explorations of how this fear is expressed within an oncology setting and responded to are currently lacking. The aim was to investigate how head and neck cancer survivors in follow-up consultations express FCR, investigate how a healthcare professional addresses recurrence fears, and examine how survivors experience this interaction. We recorded the follow-up consultations of those participants who have reported FCR as a concern on the Patient Concerns Inventory. We also conducted a follow-up phone interview with the participants. We analysed the transcripts using thematic analysis. Five men and six women were recruited, aged 55-87 (mean age = 64). Follow-up consultation analyses revealed that the consultant used "normalising FCR," "reassurance," and "offer of referral to a counsellor." Interviews revealed themes around how they coped with FCR, relevance of personal history on FCR, and the impact of feeling gratitude towards the consultant on expression of FCR. Analyses indicate that patients may feel reluctant to raise their FCR with their clinician for fear of appearing "ungrateful" or of damaging a relationship that is held in high esteem. Findings indicate the initiation of FCR with patients can be beneficial for patient support.

Time to onset of bisphosphonate-related osteonecrosis of the jaws: a multicentre retrospective cohort study.

OBJECTIVES: Osteonecrosis of the jaw (ONJ) is a potentially severe adverse effect of bisphosphonates (BP). Although the risk of ONJ increases with increasing duration of BP treatment, there are currently no reliable estimates of the ONJ time to onset (TTO). The objective of this study was to estimate the TTO and associated risk factors in BP-treated patients. SUBJECTS AND METHODS: Retrospective analysis of data from 22 secondary care centres in seven countries relevant to 349 patients who developed BP-related ONJ between 2004 and 2012. RESULTS: The median (95%CI) TTO was 6.0 years in patients treated with alendronate (n = 88) and 2.2 years in those treated with zoledronate (n = 218). Multivariable Cox regression showed that dentoalveolar surgery was inversely associated, and the use of antiangiogenics directly associated, with the TTO in patients with cancer treated with zoledronate. CONCLUSIONS: The incidence of ONJ increases with the duration of BP therapy, with notable differences observed with respect to BP type and potency, route of administration and underlying disease. When data are stratified by BP type, a time of 6.0 and 2.2 years of oral alendronate and intravenous zoledronate therapy, respectively, is required for 50% of patients to develop ONJ. After stratification by disease, a time of 5.3 and 2.2 years of BP therapy is required for 50% of patients with osteoporosis and cancer, respectively, to develop ONJ. These findings have significant implications for the design of future clinical studies and the development of risk-reduction strategies aimed at either assessing or modulating the risk of ONJ associated with BP.

Health related quality of life following the treatment of oropharyngeal cancer by transoral laser.

In 2006, our Institution changed the treatment strategy for small volume primary oropharyngeal tumours to transoral laser microsurgery (TOLM). The main aim of this cohort study was to report the health related quality of life (HRQOL) at around 2 years following TOLM in consecutive patients treated from July 2006 through April 2013. The University of Washington Quality of Life (UW-QOL) questionnaire was administered annually up to Spring 2014 and adjusting for mortality the overall response rate was 71 % (108/153). Tonsil primary site characterised 60 % (98) of patients, base of tongue 25 % (40), soft palate 13 % (21) and others 2 %, (3). Most patients had TOLM, neck dissection and adjuvant radiotherapy, with 21 % (34) of tumours at stage 1 or 2, 25 % (40) at stage 3 and 54 % (88) at stage 4. Kaplan-Meier estimates of overall survival were 94 % at 1 year, 88 % at 2 years and 68 % at 5 years after TOLM. Three-quarters (76 %) reported their overall QOL as being good, very good or outstanding, and by domain a clear majority of patients (range 57-94 %, median 79 %) reported none or only minor problems, most notably for swallowing, chewing and speech. The main dysfunction was in saliva (39 %). In conclusion, the outcomes in TOLM for oropharyngeal squamous cell carcinoma are very encouraging. The data supports the current treatment strategy in the Unit. Further outcomes research is required to help refine patient selection to help optimise the survival and HRQOL benefit of TOLM.

Do the elderly raise different issues when using the Patient Concerns Inventory in routine head and neck cancer follow-up clinics?

Head and Neck (H&N) cancer treatment can have a major detrimental impact on patient lives, and these issues can go unrecognised and be inadequately addressed. The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across age groups attending routine H&N cancer follow-up clinics with particular focus on the elderly (75 years or older). The PCI-HN data were obtained from patients attending follow-up clinics between August 2007 and January 2013. The groups for comparison were: <55 (n = 105), 55-64 (n = 170), 65-69 (n = 64), 70-74 (n = 68), and ≥75 (n = 76), the median in this last group of 79.1 years. Regarding quality of life (QoL) on first completing the PCI the elderly reported better anxiety and mood, higher social-emotional subscale scores and better overall QoL. On the PCI, being elderly did not seem to affect the total numbers of items selected, though fewer items were selected from the psychological, emotional and spiritual well-being domain, and in particular the item about fear of recurrence. Dentist and surgeon were the two health professionals most often selected that patients wished to see or be referred on to. It is possible to recognise concerns in routine clinical care, thus allowing the opportunity for intervention and support to improve the outcome for the elderly.

How often do head and neck cancer patients raise concerns related to intimacy and sexuality in routine follow-up clinics?

Intimacy and sexuality problems are underreported in head and neck cancer patients. The aim of this study was to collate the various prompts available in a routine follow-up clinic through the use of an intimacy screening question and Patient's Concerns Inventory (PCI), and to identify how often these problems were raised by patients and what possible actions took place as a consequence. 177 patients completed the intimacy screening question, PCI and UW-QOLv.4 at follow-up clinics, from October 2008 to January 2011. Case note review identified if intimacy was mentioned in clinic letters and if referral for support was made. On the intimacy screening question, 15 % (26) reported problems of considerable/some concern (24) or selected intimacy/sexuality on the PCI (2). The PCI identified that 9 of the 24 reporting the worst problems wanted the topic discussed in clinic, and clinic letters suggested that 5 of these discussed the issue in clinic with 4 being referred on, 3 to a clinical psychologist and 1 to a clinical nurse specialist. Intimacy problems are underreported in clinic reviews. It is a difficult subject to discuss. It will remain a potential unmet need unless attempts are made to advance the opportunities for patient screening, information leaflets, staff training on how to talk about such sensitive issues and referral for counselling.

'What will I be like' after my diagnosis of head and neck cancer?

Consequences of treating head and neck cancer are reflected in health-related quality of life (HRQOL) patient-reported outcomes. HRQOL is an important outcome alongside survival and recurrence. However, relatively little HRQOL information is in a format that patients and oncology teams can easily interpret as a guide to likely outcomes following curative treatment. The study aim was to collate University of Washington Quality of Life (UW-QOL) questionnaires collected 1995-2012 at the Regional Head and Neck Surgical Unit with a view of summarizing key clinical-demographic influences on HRQOL outcomes at 2 years following diagnosis. Patients completing UW-QOL questionnaires at 9-60 months had their record closest to 2 years selected for cross-sectional analyses, while all questionnaires were analyzed to assess temporal trends. 65 % (1,134) of survivors to 9 months had a UW-QOL record in the cross-sectional analysis (median 23 months). Overall 1,349 completed 5,573 UW-QOL questionnaires. Various associations were seen, notably late overall clinical staging and treatment adversely associated with UW-QOL physical functioning domains. Logistic regression was used to better understand the predictive factors of UW-QOL outcome and determined the final formatting of tables for results. These tables provide important reference data about UW-QOL outcome at 2 years relevant to patients at the outset of their cancer journey. The increasing amount of HRQOL data allows for quite detailed subgroup analysis, which can help give patients and the clinical team a better understanding of likely long-term HRQOL outcomes. How this is best utilized in clinical care needs further evaluation.

Do head and neck cancer survivors attend a high street dentist on a regular basis?

Head and neck cancer (HNC) patients face complex oral health issues following treatment. The aims of this study were to determine the proportion of HNC patients attending their dentist regularly and investigate clinicodemographic characteristics associated with attendance. Two surveys asked about patient attendance patterns and dentition. Pre-treatment orthopantomographs were evaluated for those treated between 2007-2009. The response rate was 66% (444/672). 69% (305/444) saw a high street dentist regularly. 28% of edentulous patients attended regularly compared with 84% with natural teeth, p < 0.001. Associations at p < 0.001 with regular attendance were the leaving of formal education (> 16 years) and earlier clinical staging. HNC patients should be encouraged to see a dentist regularly for routine dental care and cancer surveillance in partnership with the cancer service.

Conversational artificial intelligence: the interface with the patient concerns inventory.

The patient concerns inventory (PCI) allows patients to highlight the issues they would like to discuss at their outpatient consultation. It improves patient-clinician communication and has proven benefits. While the PCI is effective, patient experiences could be improved with better access to it and the ability to more easily and frequently express their concerns. This, of course, is in the context of ever-increasing healthcare challenges and limited resources. Use of conversational artificial intelligence (CAI) represents an opportunity to improve information flow between patients and professionals remote from the consultation. This paper highlights the potential for CAI to provide an 'always-on' platform, using natural language interface technology and based on the PCI, which patients can access via their mobile devices. We also discuss potential pitfalls and concerns, along with outlining a current clinical trial assessing, in the first instance, usability of this technology.

Issues patients would like to discuss at their review consultation: variation by early and late stage oral, oropharyngeal and laryngeal subsites.

PURPOSE: The patient concerns inventory (PCI) was developed to help patients raise issues/concerns during routine follow-up and to indicate team members they want to see. This paper reports the use of the PCI across various H&N Cancer sub-sites (oral, oropharyngeal and laryngeal) and stages of disease (early and late) and describes the main concerns that patients want to discuss using a cross-sectional survey comprising the PCI with the University of Washington Quality of Life questionnaire. Patients treated for primary H&N squamous cell carcinoma, 1998-2009, were identified from the University Hospital Aintree H&N Cancer database. 447/775 (58 %) patients responded. Fear of recurrence concerns was common to all clinical groups (range 32-67 %). Speech issues were more common with laryngeal tumours, and saliva issues with oropharyngeal tumours (32 % early, 48 % late). Apart from early-stage laryngeal tumours, patients consistently reported issues concerning dental health/teeth and chewing. The median (IQR) number of concerns overall was 4 (2-7), with significant variation (p < 0.001) between clinical groups ranging from 2 (1-6) for early-stage oral to 6 (2-10) for late-stage oropharyngeal and 7 (5-9) late-stage laryngeal. The results indicated that PCI can be readily incorporated into managing HNC patients and supports a holistic multidisciplinary approach to clinic consultations. It accommodates difficult issues such as fear of recurrence and intimacy. Completion of the PCI by patients before consultation can highlight problems and concerns that doctors can target for discussion, thereby streamlining consultations, and ensuring that patient needs are better met, thus creating a more effective service.

Follow-up arrangements in head and neck cancer clinics during the COVID-19 pandemic: results from two tertiary UK head and neck cancer centres.

INTRODUCTION: The aim of this paper is to report the pattern of follow-up that occurred for a cohort of head and neck cancer (HNC) patients across two large centres in the UK (Aintree and Leeds), as a consequence of the COVID-19 pandemic. METHODS: Patients had been treated for HNC with curative intent between April 2017 and October 2019 by 14 oral and maxillofacial (OMFS) and ear nose and throat (ENT) oncology surgeons in the Patient Concerns Inventory intervention trial. In October 2020, hospital records were reviewed, and information collected on the timing and mode (face-to-face/telephone/video) of follow-up consultations. In addition, recurrence, second primary tumours and deaths were recorded. RESULTS: At the start of 'lockdown', 212 members of the cohort were known to be alive. During the post-lockdown period (follow-up appointment data comprised 5 months in Aintree and 7 months in Leeds) 7 died and 13 were identified as palliative/recurrence/new primary/metastases ('new event'). In Aintree, the first ENT/OMFS consultations after lockdown were 51 (67%) telephone and 25 (33%) face-to-face appointments. In Leeds, 46 (78%) consultations were by telephone and 13 (22%) were face-to-face. The second ENT/OMFS consultations post lockdown included 11 (44%) telephone and 14 (56%) face-to-face in Aintree, and 21 (75%) telephone and 7 (25%) face-to-face in Leeds. CONCLUSIONS: These data suggest that clinicians favoured remote consultations. Variations in practice were observed but reached a point of a 'hybrid follow-up approach' that included both face-to-face and remote consultations. With the emergence of telemedicine, clinicians may consider a follow-up model tailored to risk stratification. The development of the mode of such a consultation model needs further evaluation.

Patients' views of physical activity whilst living with and beyond head and neck cancer.

Exercise is an important component of recovery following cancer. Head and neck cancer (HNC) patients typically report low levels of engagement in exercise initiatives. The aim of this study was to give insight into HNC patients' reflections on how and why they would be interested in participating in an exercise programme. A stratified sample of 51 patients based on age, gender and initial interest in an exercise programme was selected from 430 postal survey respondents. Twenty-five took part in a semi-structured telephone interview. There was responder bias with females, younger patients, and those already participating in or interested in an exercise programme being over-represented. The responders in this study highlighted issues related to physical activity levels, perceived ability to meet physical activity guidelines for cancer survivors, perceived exercise benefits, perceived exercise barriers, and advice to others diagnosed with cancer. The findings support the premise of personalized interventions tailored towards the specific needs of the patient, supported by patient peers to emphasize the benefits and help motivate patients to take part. In order to promote engagement in exercise there needs to be collaborative, culturally sensitive and individualized approaches, in order to address the specific barriers experienced by HNC patients.

A survey to ascertain peer support models available in Head and Neck cancer across the United Kingdom.

In cancers and chronic conditions, peer support (PS) has been shown to improve quality of life (QOL) and provide an important coping mechanism for patients, however there is little evidence for this intervention in Head and Neck cancer (HNC). Peer support allows individuals to come together and share information, encouragement, and experiences. It is delivered in a variety of ways including one-to-one, online, and support groups. There is limited literature regarding the timing, barriers, and types of PS available for individuals with HNC across the United Kingdom (UK). The aim of this project was to survey healthcare professionals with respect to their experience regarding types, timings, and barriers to PS in HNC. The survey was developed based on the literature, feedback and advice from a HNC patient research group and healthcare professionals. It was conducted online and consisted of twelve questions. Eighty-eight individuals responded covering twenty-four of twenty-six cancer alliances across the UK. Three main themes with subthemes were identified: patient barriers (emotional barriers and patient limitations), organisational barriers (administrative problems, limited time and resources and COVID-19), and staff barriers (lack of departmental support, concerns with PS and matching and timing of support). The survey demonstrated the different types of PS available across the UK and the barriers faced when implementing this support. It highlighted the complexity of being able to satisfactorily deliver appropriate and effective PS in HNC and the challenges involved.

A 31-year review of composite radial forearm free flaps for head and neck reconstruction.

The aim of this study was to report the patient characteristics and radial fracture rates in a consecutive series of composite radial forearm free flap (CRFFF) for head and neck reconstruction over a 31-year period. The patients were identified from between 1990 to 2020 inclusive from theatre records and records from previous analyses at the Unit on free flap outcomes. Electronic case notes were accessed where available, to gather information on the operation, histopathology, and radiographs. Patients were categorised into three groups for analysis: (1) new oral cancers with a composite radial being the first choice of flap, (2) new oral cancers with a composite radial being the choice of flap following compromise of another bony flap, (3) osteoradionecrosis (ORN) cases. There were 103 CRFFF cases, median (IQR) age 69 (59-80) years, comprising 78 (Group 1), 5 (Group 2) and 20 (Group 3). The CRFFF failure rate was 6% (6/103) and the radius fracture rate was also 6% (6/103), both with 95% confidence interval 2.2-12.2%. Of the 6 radius fractures, 1 underwent surgical management (rush nailing), 1 died in hospital and the others managed with cast immobilisation. Two-year overall survival after surgery for the103 patients was 54% (SE 5%), while 5-year survival was 40% (SE 5%). In conclusion, in spite of the familiarity with other bone flaps such as fibular free flap, DCIA, scapula, and the limited bone stock and potential fracture related morbidity associated with the CRFFF, this flap still has a place in the surgical reconstructive armamentarium.

Risk stratification for poor health-related quality of life following head and neck cancer through the aid of a one-page item prompt list.

The aim of this work was to evaluate the usability of a single-page, patient-completed, condition-specific prompt list, the Patient Concerns Inventory (PCI-HN), to risk-stratify for poor health-related quality of life (HRQOL). Data were collected between 2008 and 2017. The main dataset comprised 310 patients first completing the PCI-HN and University of Washington Quality of Life questionnaire (UW-QOLv4) between 2012 and 2017. Another 201 patients first completing the PCI-HN between 2008 and 2011 provided a second dataset for independent validation. Subsequent completions of the PCI-HN in both groups and the distress thermometer (DT) were also used as further validation datasets. Associations between PCI-HN items selected by patients and a range of UW-QOLv4 outcomes were explored using conventional logistic regression and Chi-squared automated interaction detection (CHAID) analyses. One quarter of patients reported less than good HRQOL, range 26-29% across the four datasets. Several individual items from within the PCI-HN were predictive of adverse outcomes. The total number of items selected was also predictive. The single-sheet prompt list enables clinicians to identify patients at high risk of poor HRQOL. This simple approach has the potential to be integrated into routine clinical practice.

Patient characteristics and refusal to participate in a head and neck cancer intervention trial: experience of two tertiary UK head and neck cancer centres.

INTRODUCTION: Randomised clinical trials are an essential component for robust clinical evaluation. They are expensive to deliver but can fail to achieve the required outcomes. This paper reports details of trial recruitment in a head and neck Patient Concerns Inventory intervention trial from two UK head and neck tertiary centres. MATERIALS AND METHODS: Data were collected for a pragmatic cluster preference randomised control trial with 15 consultants recruiting patients treated with curative intent after a diagnosis of head and neck cancer (all sites, disease stages, treatments). Ethical approval was given to report on those not recruited by the following characteristics: trial site, trial arm, age, sex, tumour site, overall stage, index of multiple deprivation quintile, timeframe. RESULTS: There were 368 patients approached who remained eligible and 80 (22%) declined to participate. Logistic regression suggested that age group (p = 0.008) and index of multiple deprivation quintile group (p = 0.003) were independent predictors of refusal. CONCLUSIONS: Although recruitment to the trial was very good, it raised the issue of lower recruitment in the more deprived older group and lower social economic strata. Innovative ways need to be explored to facilitate the 'hard to reach' group contributing to, and benefiting from, clinical trials.

Immediate postoperative care on high dependency unit or ward following microvascular free tissue transfer: lessons learnt from a change in practice imposed during the COVID-19 pandemic.

The COVID-19 pandemic resulted in sudden changes to the established practice of using the high dependency unit (HDU) for the first night of postoperative care following microvascular free tissue transfer. Patients were managed instead on the head and neck ward. This retrospective case-note review aimed to report outcomes in consecutive patients treated before and during the pandemic, and to reflect on the implications of ward-based rather than HDU care. A total of 235 patients had free tissue transfer between 3 January 2019 and 25 February 2021: 125 before (lockdown 23 March 2020), and 110 during the pandemic (52 ward-managed and 58 HDU-managed). There were subtle case-mix differences during the pandemic, with 92% of ward-treated patients having oral cancers compared with 64% of HDU patients, and 73% of ward patients having a tracheostomy compared with 40% of HDU patients. Ward patients were less likely to receive electrolyte replacement (45% HDU vs 0% ward) and inotropes (12% HDU vs 2% ward). There were fewer returns to theatre for evacuation of a haematoma or re-anastomosis during the pandemic than there were before it. Other than fewer haematoma complications during the pandemic, the nature of complications was similar. In conclusion, the dramatic changes imposed by the pandemic have shown that the ward is a safe place for patients to be cared for immediately postoperatively, and it alleviates the bed pressures experienced in HDU. Careful case selection and clear criteria are required to identify patients who need the HDU.