Concerns raised by people treated for head and neck cancer: a secondary analysis of audiotaped consultations in a health services follow-up clinic.

PURPOSE: 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. METHODS: 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. RESULTS: 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). DISCUSSION: 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. CONCLUSION: The PCI promoted the sharing of concerns in follow-up consultations between patient and consultant.

Evaluation of an Education-based Training Orientation for Resident Physicians in an Intensive Care Unit in Hawai'i.

The need for multidisciplinary teams to provide complex care has increased as the population ages. As these teams become increasingly integrated, the knowledge, skills, and attitudes of resident physicians to practice safe and effective care in intensive care units (ICUs) evolves. A structured and multidisciplinary orientation day for resident physicians was implemented to assess improvements in physician confidence at Tripler Army Medical Center in Hawai'i from July 2019 to June 2020. ICU residents received an orientation day from a multidisciplinary team, with an emphasis on practical knowledge for common disease processes in a system-based fashion and competency in procedural skills. A total of 30 residents were asked to complete a pre- and post- orientation survey over a 1-year period, with 17 pre and post surveys completed for a response rate of 57%. The survey measured residents' perceived confidence in various tasks. Scores were compared using a paired 2-sampled t-test to assess statistical significance. The majority of resident physicians (76%) had at least 1 month of prior ICU experience. Statistically significant improvement was seen in self-reported abilities in performing 6 of the 10 elements assessed. With the diverse pathophysiology in critical care, it was essential to create a broad orientation with didactic and simulation-based learning, which resulted in observed improvement in more than half of the areas of interest. Adopting an orientation day for resident physicians rotating through the ICU can improve resident physician confidence, review important knowledge and skills, and highlight the role of each contributing multidisciplinary team member.

Patient worry and concern associated with referral on the two-week suspected head and neck pathway.

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.

The Patient Concerns Inventory in head and neck oncology: a structured review of its development, validation and clinical implications.

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.

Implications of the Quality of Life Metric in head and neck cancer.

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.

Changing trends in the microvascular reconstruction and oral rehabilitation following maxillary cancer.

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.

Health-related quality of life at 3 months following head and neck cancer treatment is a key predictor of longer-term outcome and of benefit from using the patient concerns inventory.

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.

An Economic Evaluation Supported by Qualitative Data About the Patient Concerns Inventory (PCI) versus Standard Treatment Pathway in the Management of Patients with Head and Neck Cancer.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. DISCUSSION: 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. CONCLUSION: 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. TRIAL REGISTRATION: Clinical Trials Identifier: NCT03086629.

An audit of dental assessments including orthopantomography and timing of dental extractions before radiotherapy for head and neck cancer.

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.

The Zygomatic Implant Perforated (ZIP) flap reconstructive technique for the management of low-level maxillary malignancy - clinical & patient related outcomes on 35 consecutively treated patients.

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.

Which Head and Neck Cancer Patients Are Most at Risk of High Levels of Fear of Cancer Recurrence.

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.

Balancing patients' fears of recurrence and fears of COVID-19 when considering their preference for review consultations.

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.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial.

PURPOSE: The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). METHODS: A pragmatic cluster preference randomised control trial with 15 consultants, 8 'using' and 7 'not using' the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. RESULTS: Consultants saw a median (inter-quartile range) 16 (13-26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (- 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. CONCLUSION: This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.

How much of a problem is too much saliva for patients following head and neck cancer.

The aim of this paper is to report the clinical characteristic of those patients reporting "I have too much saliva" following treatment for head and neck cancer. As a new addition to the saliva question of the University of Washington quality of life questionnaire (UW-QoL), another aim is to make recommendations on how this new option should be scored and handled. Patients treated with curative intent were recruited between April 2017 and October 2019. Assessment was at the first baseline clinic a median (IQR) of 194 (125-249) days after diagnosis and 103 (71-162) days after the end of treatment. Patients completed the modified UW-QoL version 4, the Patient Concerns Inventory (PCI), Distress Thermometer, and the EQ-5D-5L. In 288 patients, saliva was of normal consistency for 80 (28%), less than normal but enough for 57 (20%), too little for 91 (32%), too much for 45 (16%), and there was no saliva at all for 15 (5%). Of patients with too much saliva, two-thirds (31/45, 69%) had tumours located in the oral cavity and 18/40 (45%) had the highest rates of free flap use during surgery. Salivation response was associated strongly with the other measures of health-related quality of life (HRQoL) and the PCI. Of those with too much saliva their results were similar to or worse than those with too little or no saliva at all. In conclusion, having too much saliva is relatively less frequently reported but is an important HRQoL consideration. Its scoring in the UW-QoL should be at a level similar to that of too little saliva.

The relevance of surgical margins in clinically early oral squamous cell carcinoma.

OBJECTIVES: There is controversy regarding surgical margins in the management of early oral squamous cell carcinoma (OSCC). The main objectives of this study were to assess the: relevance of the margin independent of tumour variables; threshold for a safe margin; relevance of dysplasia at the margin. MATERIALS & METHODS: UK based retrospective multicenter cohort study of patients with previously untreated and clinically early OSCC between 1998 and 2016. All patients had surgery as the primary modality and had surgical staging of the neck. Minimum follow-up was 2 years. Margins were classified as: clear ≥5.0 mm; close 1.0-4.9 mm; involved not cut-through (INC-T) 0.1-0.9 mm; cut-through (C-T) 0 mm. RESULTS: 669 patients were included. After adjusting for tumour variables Cox multivariate regression analysis demonstrated that close margins had similar survival outcomes to clear margins (Hazard Ratio(HR) 0.99 (95%CI 0.50-1.95) for Local Recurrence Free Survival (LRFS); HR 1.08 (95%CI 0.7-1.66) for Disease Free Survival (DFS); HR 0.74 (95%CI 0.44-1.25) for Disease Specific Survival (DSS); HR 0.80 (95%CI 0.58-1.11) for Overall Survival (OS)). C-T margins had significantly worse LRFS (HR 5.01 (95%CI 2.02-12.39)) and DFS (HR 2.58 (95%CI 1.28-5.20)). INC-T margins had significantly worse DFS (HR 1.98 (95% CI 1.01-3.87)). Time dependent receiver operating characteristic curve analysis did not demonstrate a clear margin threshold for LRFS within 24 months (AUC = 0.53 (95%CI 0.41-0.64)). Dysplasia at the margin did not influence LRFS or DFS. CONCLUSION: Only resection margins <1 mm independently affected survival outcomes. This should be considered when making decisions regarding adjuvant treatment.

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: baseline results in a cluster preference randomised controlled trial.

PURPOSE: The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. METHODS: This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either 'using' (n = 8) or 'not using' (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). RESULTS: From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71-162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from - 0.7 to + 2.2 min). CONCLUSION: Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.

Health-related quality of life after oral cancer treatment: 10-year outcomes.

OBJECTIVE: The aim of this study was to report 10-year health-related quality of life (HRQOL) outcomes after treatment of oral squamous cell carcinoma (OSCC). STUDY DESIGN: Cross-sectional HRQOL surveys collated over a 13-year period for patients treated from 1992 yielded a cohort of 674 patients with OSCC who had undergone treatment with curative intent. HRQOL closest to 2 and 10 years was measured by using the University of Washington Quality of Life (UW-QOL) questionnaire. RESULTS: UW-QOL data were available for 67% (154) of 230 patients alive at 10 years. Three-quarters reported their overall quality of life (QOL) as good, very good, or outstanding. Free-flap surgery was the strongest predictor of overall QOL being less than good at 10 years. A significant problem or dysfunction, ranging from 7% to 13% across the 12 UW-QOL domains, was reported by a minority of patients. At the group level, the changes from 2 years to 10 years were minimal, with some improvement observed in appearance, chewing, mood and anxiety, and deterioration in swallowing. There was considerable scatter in individual changes over time. CONCLUSIONS: At the group level, HRQOL at 10 years was similar to that at 2 years; however, at the individual-patient level, the domains were not so stable.

National comparative audit of blood transfusion: 2014 audit of transfusion services and practice in children and adults with sickle cell disease.

OBJECTIVES: To determine the organisational resources in place; what blood was being transfused, why, how, where, when and by whom; whether laboratory support and policies met standards for patients with sickle cell disease (SCD). BACKGROUND: SCD affects 14 000 people in the United Kingdom (UK). Standards and guidelines do not cover all aspects of transfusion in SCD and there are no data on their use; people may become very sick without warning presenting to non-specialist hospitals; blood services are increasingly supplying units for transfusion in SCD with little data on their use. METHODS: A retrospective audit of transfusion services/practice for people with SCD who had received a transfusion in January-July 2014 in participating hospitals in the UK and Republic of Ireland (ROI). RESULTS: Eighty-four hospitals submitted 1290 cases, 75% of cases came from 18 hospitals submitting 25 or more cases. Transfusions (91.2% [1164/1276]) were administered to patients with HbSS, 60% (732/1227) of patients needed Rh CE negative blood. Transfusion episodes (4528) were recorded, of which 84% were elective. Stroke prevention accounted for 42% of all transfusions; adults received 56% of transfusions of which 50% were automated red cell exchange (RCE), children received 44% of transfusions of which 87% were simple transfusions. CONCLUSIONS: There was a paucity of appropriate clinical management protocols, adequately trained staff and network arrangements. The high numbers of children being transfused, disparity in transfusion modality between children and adults and the high frequency of the CE negative Rh phenotype were noted.

Variations in concerns reported on the patient concerns inventory in patients with head and neck cancer from different health settings across the world.

BACKGROUND: The aim was to collate and contrast patient concerns from a range of different head and neck cancer follow-up clinics around the world. Also, we sought to explore the relationship, if any, between responses to the patient concerns inventory (PCI) and overall quality of life (QOL). METHODS: Nineteen units participated with intention of including 100 patients per site as close to a consecutive series as possible in order to minimize selection bias. RESULTS: There were 2136 patients with a median total number of PCI items selected of 5 (2-10). "Fear of the cancer returning" (39%) and "dry mouth" (37%) were most common. Twenty-five percent (524) reported less than good QOL. CONCLUSION: There was considerable variation between units in the number of items selected and in overall QOL, even after allowing for case-mix variables. There was a strong progressive association between the number of PCI items and QOL.