People treated for head and neck cancer (HNC) face various barriers in communicating concerns with consultants. Our aim was to investigate the number of concerns raised between patients using the Patient Concerns Inventory (PCI) and those who did not. The PCI is a 57-item prompt list used in routine HNC follow-up clinics. Additionally, we aimed to examine whether who initiated the concerns differed between groups and the factors that may predict this initiation. Secondary data analysis included 67 participants across 15 HNC consultants from specialist cancer centres in Liverpool and Leeds. Seven consultants utilised the PCI and eight did not, assigned by preferential and random assignment. Patients in the PCI group raised on average 2.5 more concerns than patients in the non-PCI group (p < .001). There was no significant relationship between group and who initiated the first concern (p = .28). A mixed-effects logistic regression was found to significantly predict who initiated the first concern in consultations (p < .05). The number of concerns raised by patients increased when the PCI was introduced pre-HNC consultation. A number of factors were shown to predict the number of concerns raised in consultations by both patient and consultant. As concerns may not be raised further following the concern mentioned, we propose that the discussion of concerns needs to be maintained by the clinician throughout the consultation and not solely at the start. The PCI promoted the sharing of concerns in follow-up consultations between patient and consultant.
Purpose The maxillectomy defect is complex and the best means to achieve optimal reconstruction, and dental rehabilitation is a source of debate. The refinements in zygomatic implant techniques have altered the means and speed by which rehabilitation can be achieved and has also influenced the choice regarding ideal flap reconstruction. The aim of this study is to report on how the method of reconstruction and oral rehabilitation of the maxilla has changed since 1994 in our Institution, and to reflect on case mix and survival. Methods Consecutive head and neck oncology cases involving maxillary resections over a 27-year period between January 1994 and November 2020 were identified from hospital records and previous studies. Case note review focussed on clinical characteristics, reconstruction, prosthetic rehabilitation, and survival. Results There were 186 patients and the tumour sites were: alveolus for 56% (104), hard palate for 19% (35), maxillary sinus for 18% (34) and nasal for 7% (13). 52% (97) were Brown class 2 defects. Forty-five patients were managed by obturation and 78% (142/183) had free tissue transfer. The main flaps used were radial (52), anterolateral thigh (27), DCIA (22), scapula (13) and fibula (11). There were significant changes over time regarding reconstruction type, use of primary implants, type of dental restoration, and length of hospital stay. Overall survival after 24 months was 64% (SE 4%) and after 60 months was 42% (SE 4%). Conclusion These data reflect a shift in the reconstruction of the maxillary defect afforded by the utilisation of zygomatic implants.
Background: Speech and language therapy (SLT) and Dietetics follow up clinics following head and neck cancer (HNC) treatment are an integral part of multidisciplinary support. The use of a condition specific prompt list can help patients to raise issues, that otherwise might be missed. The objective of the present study was to evaluate the Patient Concerns Inventory -Head and Neck (PCI-HN) in a combined SLT/ dietitian (Diet) clinic, as an adjunct to routine care. Methods: This prospective observational study recruited patients from 30th January 2019 to 19th March 2020 across one trust involving two SLTs and two Diets. Patients completed the PCI-HN and a single quality of life (QOL) question prior to their consultation. Results: Ninety-four patients were recruited from a sample of 100 consecutive patients, and they first used the PCI-HN at a median (IQR) of 2.4 (1.3-7.1) months after the end of treatment. The PCI-HN was used more than once by 65 patients. When first used, the most common selections were dry mouth (62%), chewing/eating (55%), mucus (44%), swallowing (41%), appetite (35%), fatigue/tiredness (34%), energy levels (33%), coughing (28%), weight (28%), speech/voice/being understood (27%) and taste (27%). PCIHN items varied by tumour site, overall clinical stage, and primary treatment. Ninety one percent (32/35) of patients said the PCI-HN "definitely" helped communication with the clinician and 83% (29/35) "definitely" wanted to continue using it. Conclusions: Our preliminary data suggest that the PCI-HN is suitable for use in routine clinical practice in combined SLT and Diet clinics, as an adjunct to routine care. It enabled a patient led approach to the consultation, addressing concerns, and identifying interventions to support patients through their recovery. Early detection of issues which impact on eating, drinking and communication, allows the opportunity for the identification, and provision, of Speech and Language Therapy and Dietetic interventions, which can aid adaption, and ultimately, promote better outcomes.
Across England the NHS (National Health Service) has set in place a national survey that invites cancer patients to report their quality of life around 18 months after their diagnosis. The two questionnaires are the EQ-5D-5L and EORTC C30. For head and neck cancer (HNC) several factors will affect patients' characteristics and response rates at the 18-month window. There were three aims of this study: to account for drop-out over the first 18 months, to report the characteristics of responders in comparison with the whole cohort, and to summarise the health-related quality of life (HRQoL) outcomes (EQ-5D-5L and EORTC QLQ-C30). Patients treated with curative intent who were cancer-free at 15 months were sent a postal survey 16 months after diagnosis, with a second reminder at 18 months. Of the 256 patients analysed, 187 were alive at the 15-month follow-up window, 20 of whom were living with recurrence. Survival was related to tumour stage, treatment intent, and mode of treatment. A total of 109 (67%) responded and the response rate was better from older patients. Older patients reported better HRQoL across all measures apart from EQ-5D-5L mobility and EORTC physical functioning, while patients living in more deprived neighbourhoods reported worse HRQoL across all measures apart from loss of appetite. Other than a tendency for a worse HRQoL in patients having surgery with free-flap transfer, there were no obvious consistent differences by tumour stage, site, or treatment. In conclusion, when reflecting on the findings of the National QoL Metric (QoLM) in HNC, it will be important to consider the influence of survivorship and response rates.
INTRODUCTION:The Patient Concerns Inventory (PCI) is a condition specific prompt list that was initially developed for head and neck cancer (HNC) and is referred to as the PCI-HN. There have been numerous publications regarding the PCI-HN, since it was first published in 2009. To date, there has not been a review of its development, validation and clinical implications. A collation of relevant papers into key sections allows multidisciplinary teams and researchers to have an overview of the PCI-HN's background, evaluation and utility. This is essential if colleagues are to have confidence in the tool and be able to reflect on how to optimise its use in clinical practice.METHODS:Five search engines were used: EMBASE, Medline, PubMed, CINAHL and Handle-on-QOL for the specific term 'Patient Concerns Inventory' up to and including 1st February 2022. In addition, an accumulation of PCI-HN data of 507 HNC patients was drawn from previous studies in Liverpool and Leeds between 2007 and 2020 and was analysed specifically for this paper.RESULTS:54 papers relating to the PCI-HN were identified. The review is structured into eight sections: (1) What is the PCI-HN and how does it work; (2) Feasibility and acceptability; (3) Psychometrics; (4) Items selected and frequency (5) Associations with Health-Related Quality of Life (HRQOL) and casemix; (6) Other observational studies; (7) Randomised trial evaluation; (8) General discussion and further research.CONCLUSIONS:As the term PCI is quite ubiquitous and produces many hits when searching the literature, this review provides a very concise and convenient historical context for the PCI-HN and collates the current literature.
The head and neck cancer (HNC) Patient Concerns Inventory (PCI) is a condition-specific prompt list that allows patients to raise concerns to cancer consultants that otherwise might be overlooked. This is the first economic evaluation of the PCI in patients with HNC investigating the costs and effects to the health service of not prioritising certain treatment pathways in addition to the primary cancer pathway. Additional costs can be accrued due to delayed referral to other appropriate services, e.g. hospital dentist. Economic evidence could influence future policy direction in this area globally. Alongside a 3-year clustered randomised controlled trial, an economic evaluation was undertaken with Client Service Receipt Inventory data collected at three different time points (baseline and 6 and 12 months post-baseline). Patients were identified by a multidisciplinary team at the trial clinics. This economic analysis compared the PCI intervention versus the non-PCI treatment pathway. A deterministic and probabilistic sensitivity analysis was conducted to investigate the cost per quality-adjusted life-year (QALY) gain of the PCI versus non-PCI intervention treatment pathways. Qualitative data were also collected from seven consultants to triangulate findings from the economic evaluation. The analysis used data from 191 patients (66% of the full trial sample). The PCI inventory was low cost, at just over £13 per participant. The PCI intervention was cost effective and also cost saving, with an incremental cost difference of £295.91 over the 12-month follow-up period. The QALY values were higher in the PCI intervention strategy, with a value of 0.79, whereas the non-PCI group had a value of 0.76, thus the PCI intervention was dominant. The sensitivity analysis showed that, at a willingness-to-pay threshold of £20,000 per QALY gained, the probability of being cost effective was 0.85 (95% confidence interval [CI] 0.80–0.83). Qualitative results showed that consultants using the PCI reported an enhanced awareness of patients’ overall post-treatment needs. The PCI provided an effective means to conduct clinical consultations by avoiding unnecessary healthcare costs and focussing on aspects of care most important to patients. The cost per QALY gain was within the National Institute for Health and Care Excellence guideline threshold. The economic evaluation showed that the PCI intervention strategy was dominant and therefore cost saving to the national health service (NHS) and was more effective in terms of treatment. The PCI appears to be a low-cost intervention that generates a cost-effective benefit to patients from a NHS perspective if rolled out as part of routine care. Qualitative evidence has shown that the use of the PCI is supported by consultants in routine practice. Clinical Trials Identifier: NCT03086629.
Introduction Patient worry and concern of cancer adds to the latent distress associated with referral on the two-week suspected pathway (2WW). For oral cancer, as the conversion rate is in the region of 5-10%, the majority of people will have needless cause for concern. Aim This study aims to report how worried/concerned patients were that the reason for referral might mean that they had cancer and to relate to referral characteristics. Materials/methods All patients referred on the 2WW to two oral and maxillofacial departments in the three months from January to March 2021 were sent a one-off anonymised study-specific post-consultation survey. Results In total, 107 of 353 patients responded to the survey (30%). The response rate increased notably in the older group (p <0.001). The cancer conversion rate overall was 5.4% (19/353), stratified as 2.4% (4/167) for general dental practitioner and 8.1% (15/186) for general medical practitioner (p = 0.02). When asked how worried/concerned they were that the reason for referral might have been for cancer, the response was 'very much' (34%, 33/98), and 'somewhat' (24%, 24/98). Concerns tended to be higher in women and those under 40. Conclusions In recognition of the proportion of patients on the 2WW pathway without cancer who have 'very much worry and concern', it is appropriate to explore ways to alleviate this anxiety, and the best means to achieve this needs careful consideration.
Introduction Head and neck cancer (HNC) patients should receive a dental assessment at an appropriate time before commencing radiotherapy (RT), to prevent complications such as osteoradionecrosis (ORN) if extractions are required. A recent orthopantomogram radiograph (OPG) is part of this assessment.Aim To compare the delivery of pre-RT dental assessment at the Regional Oncology Centre against national guidelines in regard to OPG assessments and timing of extractions.Materials and methods A consecutive cohort of patients treated curatively were selected within two timeframes (January to March 2018 and January to March 2019) using multidisciplinary team records at Liverpool University Hospital. Patient notes, x-ray images and records were examined.Results In total, 145 patients were identified. Eighty-nine percent (129) had an OPG radiograph and 72% (104) had a pre-RT dental assessment. Oral and laryngeal sites had the highest number of missed assessments. Altogether, 54 patients had dental treatment, with 47 undergoing extractions. Extractions were completed a median 13 days before RT started. By November 2020, no patients had been diagnosed with ORN.Conclusions Three-quarters of patients received a pre-RT assessment but there is scope for improvement. OPGs should be part of initial HNC staging and referral to Regional Oncology Centre dental services should be made as part of the pre-RT workup.
Background: An increasing number of head and neck cancer (HNC) patients survive many years after treatment. They are at risk of developing late effects and these could be associated with worse health-related quality of life (HRQOL) and influence the nature of any concerns they want to discuss in consultations. The aim of this study was to report their HRQOL and concerns at oral and maxillofacial oncology review clinics, from 5- and 10 -year after primary cancer diagnosis. Methods: The University of Washington quality of life questionnaire (UW-QOL v4) and Patient Concerns Inventory (PCI) were completed by patients attending review clinics from 4th June 2008 to 11th March 2020. Results: There were 167 with data at least 5 years after diagnosis, with 105 close to 5 years (median 63 months) and 99 at 10 years (median 119 months). Those under review for primary cancer fell from 50% at 5 years to 39% at 10 years, increased for osteoradionecrosis (ORN) from 27% to 36%, and for those seen for second primary or recurrence remained at 24%. HRQOL was notably worse in patients with further disease particularly at 5 years in regard to pain, chewing, taste and both the social-emotional and physical function subscales of the UW-QOL. The median [interquartile range (IQR)] number of PCI items at 5- and 10 -year were 3 [1-7] and 4 [2-9] respectively. Conclusions: There were subtle differences in the frequency of PCI items however items related to dry mouth, dental function, and swallowing predominated. The findings highlight the complex needs of longterm survivors.
Abstract Introduction During clinical follow‐up it can be difficult to identify those head and neck cancer (HNC) patients who are coping poorly and could benefit from additional support. Health‐related quality of life (HRQOL) questionnaires and prompt lists provide a means by which patients can express their perceived outcomes and raise concerns. The first aim of this secondary analysis following a randomized trial was to explore which patient characteristics, at around 3 months following treatment completion (baseline), best predict HRQOL 12 months later. The second aim was to attempt to ascertain which patients were most likely to benefit from using prompt list. Methods Cluster‐controlled pragmatic trial data were analyzed. HRQOL was measured by the University of Washington Quality of life questionnaire (UW‐QOLv4). The prompt list was the Patient Concerns Inventory (PCI‐HN). Results The trial involved 15 eligible consultants and a median (inter‐quartile range) of 16 (13–26) primary HNC patients per consultant, with 140 PCI patients and 148 controls. Baseline HRQOL was the dominant predictor of 12‐month HRQOL with other predictors related to social, financial, and lifestyle characteristics as well as clinical stage and treatment. Although formal statistical tests for interaction were non‐significant the trend in analyses over a range of outcomes suggested that patients with worse baseline HRQOL could benefit more from the PCI‐HN. Discussion HRQOL early post‐treatment is a key predictor of longer‐term outcome. Measuring and using HRQOL and the PCI‐HN are not only surrogates for predicting HRQOL at 15 months post‐treatment, but also tools to help guide interventions.
Introduction: Controversy exists regarding the management of the clinically node negative neck (cN0) in maxillary or gingival squamous cell carcinoma (MGSCC). This study reviews cN0 MGSCC patients over a 10-year period to record the method of neck management and outcome. Methods: Theatre and pathology records were searched for patients diagnosed and treated for site specific cN0 MGSCC from 2008-2018. The Fisher's exact test was used for comparative analysis and survival statistics calculated using the Kaplan–Meier method and log-rank test. Results: 15/36 of patients had an END and 21/36 underwent observation following primary surgery. Included in these 21 patients, 5 underwent vessel access for flap anastomosis with node sampling. 13/36 of patients received PORT. The total recurrence rate was 15/36; 5/15 local, 8/15 regional and 2/15 with locoregional. Regional recurrence was similar in observed patients 5/21 compared to those who had an END 3/15. 8/15 of patients with recurrence underwent salvage surgery. Salvage rates were 3/7 in patients who received PORT and 5/8 without, with success in 2/3 and 4/5 respectively. Conclusions: END 5- year disease specific survival (DSS) (67%) was similar to observed patients (65%) although those with vessel access had a 80% DSS (p=0.87). pT4a END patients had a higher 5- year DSS versus observation only patients (56% vs 44%) (p=0.53). Bone invasion was significant to RL (p= 0.05). There was no advantage to having an END for the N0 neck in MGSCC and control was also achieved with a ‘watch and wait’ policy followed by salvage if required. Introduction: Controversy exists regarding the management of the clinically node negative neck (cN0) in maxillary or gingival squamous cell carcinoma (MGSCC). This study reviews cN0 MGSCC patients over a 10-year period to record the method of neck management and outcome. Methods: Theatre and pathology records were searched for patients diagnosed and treated for site specific cN0 MGSCC from 2008-2018. The Fisher's exact test was used for comparative analysis and survival statistics calculated using the Kaplan–Meier method and log-rank test. Results: 15/36 of patients had an END and 21/36 underwent observation following primary surgery. Included in these 21 patients, 5 underwent vessel access for flap anastomosis with node sampling. 13/36 of patients received PORT. The total recurrence rate was 15/36; 5/15 local, 8/15 regional and 2/15 with locoregional. Regional recurrence was similar in observed patients 5/21 compared to those who had an END 3/15. 8/15 of patients with recurrence underwent salvage surgery. Salvage rates were 3/7 in patients who received PORT and 5/8 without, with success in 2/3 and 4/5 respectively. Conclusions: END 5- year disease specific survival (DSS) (67%) was similar to observed patients (65%) although those with vessel access had a 80% DSS (p=0.87). pT4a END patients had a higher 5- year DSS versus observation only patients (56% vs 44%) (p=0.53). Bone invasion was significant to RL (p= 0.05). There was no advantage to having an END for the N0 neck in MGSCC and control was also achieved with a ‘watch and wait’ policy followed by salvage if required.
Background The zygomatic implant perforated (ZIP) flap technique provides immediate reconstruction and rapid dental rehabilitation for low-level malignant tumors. Methods Patients who underwent ZIP flap reconstruction between December 2015 and February 2021 were followed prospectively. Results Thirty-five consecutively treated patients were studied with 16 undergoing surgery alone and 19 undergoing surgery followed by radiotherapy. The median time to fit the prosthesis was 29 days with all patients requiring adjuvant radiotherapy receiving their fixed dental prosthesis prior to its commencement. Vascularized flap (100%), zygomatic implant (98.4%), and prosthesis (97%) survival were excellent and the ZIP flap protocol was highly rated by patient-related outcome measures especially for the chewing domain. Conclusions The ZIP flap technique provides an excellent means of providing an autogenous oronasal seal and a foundation for immediate cortically anchored fixed dental rehabilitation. Clinical Significance This technique provides rapid and robust rehabilitation for patients presenting with low-level maxillary malignancy despite the use of radiotherapy.
The influence of area-based and individual indicators of socioeconomic status (SES) on health-related quality of life (HRQOL) and patient concerns following head and neck cancer is complex and under-reported. The aim of this study is to use baseline data collected as part of a randomised controlled trial to provide greater detail on the attribution of SES to University of Washington Quality of Life version 4 (UWQOL v4), Distress Thermometer and European Quality of Life Five-Dimension Five-Level (EQ-5D-5L) outcomes. A total of 288 trial patients attended baseline clinics a median (Interquartile (IQR)) of 103 (71–162) days after the end of treatment. Area-based SES was assessed using the Index of Multiple Deprivation (IMD) 2019. Thirty-eight per cent (110/288) of patients lived in the most deprived IMD rank quintile. Less than good overall quality of life (31% overall) was associated with current working situation (p = 0.008), receipt of financial benefits (p < 0.001), total household income (p = 0.003) and use of tobacco (p = 0.001). Income and employment were significant patient level indicators predictors of HRQOL outcomes after case-mix adjustment. The number of Patient Concerns Inventory items selected varied significantly by overall clinical tumour clinical stage (p < 0.001) and by treatment (p < 0.001) but not by area IMD or patient-level deprivation indicators. In conclusion, interventions to improve employment and finance could make a substantial positive effect on HRQOL outcomes and concerns.
Background: Fear of cancer recurrence (FCR) is recognized as a common concern for patients with head and neck cancer (HNC). The aim of this study is to describe in greater detail the demographic and clinical characteristics of HCN patients who indicate a high level of FCR in their review consultation. Methods: A pragmatic cluster-controlled trial was conducted between January 2017 and December 2018 at two UK HNC centers (Leeds and Liverpool) to test the efficacy of a prompt tool called the Patient Concerns Inventory (PCI). Patients completed the PCI and the UW-QOLv4 which included a single 5 category rating of FCR. Secondary statistical analyses focused on variables associated with high FCR. Results: Two hundred and eighty-eight trial patients were recruited in this trial. At a median of 194 days after diagnosis and 103 days after the end of treatment 8% stated ( n = 24) “I get a lot of fears of recurrence and these can really preoccupy my thoughts” and 3% ( n = 8) “I am fearful all the time that my cancer might return, and I struggle with this.” Thus, 11% ( n = 32) responded in the worst two categories, 95% Confidence interval 7.7–15.3% for high FCR. Stepwise logistic regression resulted in female gender ( p < 0.001), age ( p = 0.007), and receiving financial benefits ( p = 0.01) as independent predictors. Conclusions: Around one in ten HNC patients attending routine outpatient follow-up consultations report high FCR, however for female patients under the age of 55 the rate was one in three. This group requires specialist attention and could be the focus of a multicenter intervention trial.
Purpose Head and neck cancer (HNC) patients may experience fears regarding cancer recurrence (FoR) and of catching COVID-19. There could be unease for attending hospital clinics for face to face (F2F) examination. F2F benefit in cancer surveillance has to be balanced against the risk of virus transmission. This study aimed to report perceptions of fear of cancer and fear of COVID-19 and to report patient preference for follow-up consultation in HNC survivors during the COVID-19 pandemic. Methods The study ran from lockdown in England on 24th March to 29th July 2020. Patients were offered preference to postpone their consultation, to have it by telephone, or F2F. A postal survey was undertaken in the 2 weeks post-consultation (actual or postponed). Results There were 103 patients. Initial action by consultant and patient resulted in 51 postponed consultations, 35 telephone consultations and 17 F2F meetings, with 10 F2F triggered by the patient. There were 58 responders to the survey and most (39) had a clear preference for one mode of follow-up consultation during the COVID-19 pandemic, with half (19) preferring F2F. A similar response was seen regarding their consultations in general to address unmet needs and concerns, with 38 having a preferred mode, 29 preferring F2F. Serious fears about recurrence and COVID-19 were at relatively low levels with a tendency to be more concerned about recurrence. Conclusion Any redesign of mode and frequency of out-patient follow-up in light of COVID-19 should be undertaken in discussion with patient groups and with individual patients.