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Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Background: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. Methods: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). Results: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: − 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: − 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: − 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. Conclusions: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS. [ABSTRACT FROM AUTHOR]

Objectives determine and compare the prevalence of orofacial pain in older nursing home residents with and without dementia and explore the association between orofacial pain and health factors. Methods cross-sectional study conducted in four UK nursing homes. We used the Orofacial-Pain Scale for Non-Verbal Individuals (OPS-NVI) to identify orofacial pain in residents with dementia. Residents who were able to communicate self-reported orofacial pain. A brief oral examination was conducted. Information on demographics, Clinical Dementia Rating, Charlson Comorbidity Index, Cohen Mansfield Agitation Inventory, Barthel Index, 5-level Euroqol 5 Dimension, Oral Health Impact Profile 14, Mini Nutritional Assessment Short Form and medication was collected. Chi-squared tests, independent sample t-tests and Mann-Whitney U-tests were used to compare outcomes between groups. Multivariable logistic regression was used to evaluate predictors of orofacial pain. Results orofacial pain, assessed with the OPS-NVI, was present in 48.8% (95% confidence interval [C.I.] 36.1–50.7) of residents with dementia. Self-reported orofacial pain was present in 37.8% (95% C.I. 20.4–53.7) of residents with dementia and in 14.8% (95% C.I. 0.5–30.4) residents without dementia. Orofacial pain was significantly more prevalent in residents with dementia than those without (OPS-NVI; P  = 0.002, self-report; P  = 0.04). Having a soft diet, xerostomia, being dentate, and poor oral hygiene in dentate residents were significant predictors of orofacial pain in residents with dementia. Conclusion orofacial pain was more prevalent in residents with dementia. Oral health care should be part of routine care for residents, especially for those with dementia, to improve oral health and decrease the risk of developing orofacial pain. [ABSTRACT FROM AUTHOR]

Aims: To assess the validity of the resting and chewing components of the recently developed observational diagnostic tool, the Orofacial Pain Scale for Non-Verbal Individuals (OPS-NVI). Methods: This cross-sectional observational study was carried out in two UK hospitals. A total of 56 participants with dementia who were admitted to the acute hospital were observed for 3 minutes during rest and during chewing, and the OPS-NVI was used to identify orofacial pain. Afterwards, the participants were asked about the presence of orofacial pain using self-report pain scales. The sensitivity, specificity, and area under the receiver operating curve (AUROC) of the OPS-NVI were calculated for each activity. Spearman coefficient was calculated to assess the correlation between the number of positively scored behavior items of the OPS-NVI and the presence of orofacial pain according to self-report. Results: According to the OPS-NVI, orofacial pain was present in 5.4% of participants during rest and in 9.1% during chewing. According to self-report, the prevalence of orofacial pain was 5.4% during rest and 10.7% during chewing. The specificity of the OPS-NVI was 98.1% to 100%, the sensitivity was 66.7% to 83.3%, and the AUROC was 0.824 to 0.917. The predictive validity showed a strong correlation (0.633 to 0.930, P < .001) between the number of positive behavior items and the self-reported presence of orofacial pain. Conclusion: The resting and chewing components of the OPS-NVI showed promising concurrent and predictive validity. Nevertheless, further validation is required and highly recommended. [ABSTRACT FROM AUTHOR]

Objective: To understand the feasibility of recruiting people with advanced cancer into a randomised controlled trial of acceptance and commitment therapy (ACT) vs a standardised talking control (TC) and delivering ACT to this population; to explore the acceptability of outcome measures and generate normative data.Methods: This was a feasibility two-arm randomised controlled trial. Participants were attendees with advanced cancer at one of three hospice-based day-therapy units in London, United Kingdom, who demonstrated low scores on the Functional Assessment of Cancer Therapies-General (FACT-G). The primary end point was 3 months.Results: The recruitment target was 54 participants; 42 people were recruited and randomised to up to eight individual sessions of ACT (n = 20) or TC (n = 22). Eighteen out of 42 (43%) of participants completed the primary outcome at 3 months, and at least one follow-up was available in 30/42 (71%) participants. An exploratory analysis revealed a non-significant adjusted mean difference after 3 months in the main outcome FACT-G of -3.41 (CI = -18.61-11.79) with TC having better functioning. Over 6 months, the adjusted mean difference between trial arms was 2.25 (CI = -6.03-10.52) in favour of ACT.Conclusions: It is feasible to recruit people with advanced cancer in a trial of ACT versus TC. Future research should test the effectiveness of ACT in a fully powered trial. [ABSTRACT FROM AUTHOR]

Background Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting. Objective To investigate the relationship between pain and delirium in people with dementia, on admission and throughout a hospital admission. Design Exploratory secondary analysis of observational prospective longitudinal cohort data. Setting Two acute hospitals in the UK. Methodology Two-hundred and thirty participants aged ≥70 years were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM), pain (Pain Assessment in Advanced Dementia (PAINAD)) scale and prescription of analgesics. Logistic and linear regressions explored the relationship between pain and delirium using cross-sectional data. Results Pain at rest developed in 49%, and pain during activity for 26% of participants during their inpatient stay. Incident delirium developed in 15%, of participants, and 42% remained delirious for at least two assessments. Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03–10.25, P = 0.044). Conclusion An association between pain at rest and delirium was found, suggesting pain may be a risk factor for delirium. Since pain and delirium were found to persist and develop during an inpatient stay, regular pain and delirium assessments are required to manage pain and delirium effectively. [ABSTRACT FROM AUTHOR]

Background: Orofacial pain in people with dementia is difficult to detect, and often under-treated. Our aim was to investigate the prevalence of orofacial pain in people with dementia in acute hospitals in the UK. Secondary aims were to examine oral health status and explore associations between orofacial pain and oral health factors.Methods: This cross-sectional observational study was carried out in two UK hospitals. Using the Orofacial Pain Scale in Non-Verbal Individuals (OPS-NVI) to identify orofacial pain, 101 participants with dementia, admitted to acute medical wards, were observed for at least 3 min during rest and chewing. Verbal participants were then asked about presence of orofacial pain, using self-report pain scales. Finally, a brief oral assessment was performed.Results: Orofacial pain, assessed with the OPS-NVI, was present in 11.9% (95% C.I. 5.9, 18.8) of participants at rest and 21.9% (95% C.I. 14.6, 31.3) whilst chewing. Participants who were no longer able to self-report pain were significantly more likely to experience orofacial pain. Oral health in both dentate and edentate participants was poor. Brush frequency, indication of chewing quality, consistency of the food, presence of extra-oral abnormalities, person who performed mouth care, and oral hygiene in dentate participants were significant predictors for the presence of orofacial pain.Conclusion: Improving oral care in acute hospital patients with dementia, particularly those who cannot self-report pain, may significantly reduce pain and suffering in this population. [ABSTRACT FROM AUTHOR]

Background: Habit-interventions are designed to promote the automaticity of healthy behaviours and may also enhance self-regulatory skills during the habit-formation process. A recent trial of habit-based advice for weight loss (10 Top Tips; 10TT), found that patients allocated to 10TT lost significantly more weight over 3 months than those allocated to usual care, and reported greater increases in automaticity for the target behaviours. The current study aimed to test the hypothesis that i) 10TT increased self-regulatory skills more than usual care, and ii) that self-regulatory skills and automaticity changes mediated the effect of 10TT on weight loss. Methods: 537 obese patients from 14 primary care practices in the UK were randomized to receive 10TT or usual care. Patients in the 10TT group received a leaflet containing tips for weight loss and healthy habits formation, a self-monitoring log book and a wallet-sized shopping guide on how to read food labels. Patients were weighed and completed validated questionnaires for self-regulation and automaticity at baseline and 3-month follow-up. Within-group and Between-group effects were explored using Paired T-test and ANCOVA, respectively. Mediation was assessed using bootstrapping to estimate indirect effects and the sobel test. Results: Over 3 months patients who were given 10TT reported greater increases in self-regulatory skills (Mean difference: .08; 95% CI .01; .15) than those who received usual care. Changes in self-regulatory skills and automaticity over 3 months mediated the effect of the intervention on weight loss (β = .52, 95% Bias Corrected CI .17; .91). Conclusions: As hypothesised, 10TT enhanced self-regulatory skills and changes in self-regulatory skills and automaticity mediated the effect of the intervention on weight loss. This supports the proposition that self-regulatory training and habit formation are important features of weight loss interventions. Trial registration: This study was prospectively registered with the International Standard Randomised Controlled Trials () on 26 September 2011. [ABSTRACT FROM AUTHOR]

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia. [ABSTRACT FROM AUTHOR]

Background: The LiGHT trial (Laser-1st versus Drops-1st for Glaucoma and Ocular Hypertension Trial) is a multicentre randomised controlled trial of two treatment pathways for patients who are newly diagnosed with open-angle glaucoma (OAG) and ocular hypertension (OHT). The main hypothesis for the trial is that lowering intraocular pressure (IOP) with selective laser trabeculoplasty (SLT) as the primary treatment ('Laser-1st') leads to a better health-related quality of life than for those started on IOP-lowering drops as their primary treatment ('Medicine-1st') and that this is associated with reduced costs and improved tolerability of treatment. This paper describes the statistical analysis plan for the study.Methods/design: The LiGHT trial is an unmasked, multi-centre randomised controlled trial. A total of 718 patients (359 per arm) are being randomised to two groups: medicine-first or laser-first treatment. Outcomes are recorded at baseline and at 6-month intervals up to 36 months. The primary outcome measure is health-related quality of life (HRQL) at 36 months measured using the EQ-5D-5L. The main secondary outcome is the Glaucoma Utility Index. We plan to analyse the patient outcome data according to the group to which the patient was originally assigned. Methods of statistical analysis are described, including the handling of missing data, the covariates used in the adjusted analyses and the planned sensitivity analyses.Trial Registration: The trial was registered with the ISRCTN register on 23/07/2012, number ISRCTN32038223 . [ABSTRACT FROM AUTHOR]

Background: Globally, the number of people who die with dementia is increasing. The importance of a palliative approach in the care of people with dementia is recognised and there are national polices to enhance current care. In the UK implementation of these polices is promoted by the National Institute for Health and Care Excellence (NICE) Dementia Quality Standards (QS). Since publication of the QS new care interventions have been developed. Aim: To explore critically the current international research evidence on effect available to inform NICE Dementia QS relevant to end of life (EOL) care. Design: We used systematic review methods to seek the research evidence for three statements within the Dementia QS. These are those that recommend: (1) a case management approach, (2) discussing and consideration of making a statement about future care (SFC) and (3) a palliative care assessment (PCA). We included evaluative studies of relevant interventions that used a comparative design, such as trials and cohort studies, and measured EOL care outcomes for persons dying with moderate to severe dementia. Our primary outcome of interest was whether the intervention led to a measurable impact on wellbeing for the person with dementia and their family. We assessed included studies for quality using a scale by Higginson and colleagues (2002) for assessment of quality of studies in palliative care, and two authors undertook key review processes. Data sources included Cinahl, Embase, and PsychINFO from 2001 to August 2014. Our search strategy included free text and medical subject headings relevant to population and recommended care. Results: We found seven studies evaluating a care intervention; four assessed SFC, three PCA. None assessed case management. Studies were of weak design; all used retrospective data and relied on others for precise record keeping and for accurate recall of events. There was limited overlap in outcome measurements. Overall reported benefits were mixed. Conclusions: Quality statements relevant to EOL care are useful to advance practice however they have a limited evidence base. High quality empirical work is needed to establish that the recommendations in these statements are best practice. [ABSTRACT FROM AUTHOR]

Introduction: There has been global investment of new ways of working to support workforce pressures, including investment in clinical pharmacists working in primary care by the NHS in the England. Clinical pharmacists are well suited to support older adults who have multiple long-term conditions and are on multiple medications. It is important to establish an evidence base for the role of clinical pharmacists in supporting older adults in primary care, to inform strategic and research priorities. The aim of this scoping review is to identify, map and describe existing research and policy/guidance on the role of clinical pharmacists in primary care supporting older adults, and the models of care they provide., Methods and Analysis: A scoping review guided by the Joanne Briggs Institute methodology for scoping reviews, using a three-step strategy. We will search Medline, CINAHL, Scopus, EMBASE, Web of Science, PSYCHInfo, and Cochrane for English language articles, from 2015 -present day. Grey literature will be searched using Grey Matters guidelines, the Index of Grey Literature and Alternative Sources and Resources, and Google keyword searching. References of all included sources will be hand searched to identify further resources. Using the Population, Concept and Context framework for inclusion and exclusion criteria, articles will be independently screened by two reviewers. The inclusion and exclusion criteria will be refined after we become familiar with the search results, following the iterative nature of a scoping review. Data will be extracted using a data extraction tool using Microsoft Excel and presented using a narrative synthesis approach., Ethics and Dissemination: Ethical approval is not required for this review. Review findings will be disseminated in academic conferences and used to inform subsequent qualitative research. Findings will be published and shared with relevant local and national organisations., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Davies et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Introduction: Gender identity development services (GIDS) worldwide have seen a significant increase in referrals in recent years. Many of these referrals consist of children and young people (CYP) who experience gender-related distress. This study aims to improve understanding of outcomes of CYP referred to the UK GIDS, specifically regarding gender identity, mental health, physical health and quality of life. The impact of factors such as co-occurring autism and early social transition on outcomes over time will be explored., Methods and Analysis: This is a prospective cohort study of CYP aged 3-14 years when referred to the UK GIDS. Eligible participants will be ≤14 years at the time their referral was accepted and will be on the waitlist for the service when baseline measures are completed. Children aged under 12 years will complete the measures in an interview format with a researcher, while young people aged 12 years and over and their parents/caregivers will complete online or paper-based questionnaires. Participants will complete follow-up measures 12 months and 24 months later. The final sample size is expected to be approximately 500. Logistic regression models will be used to explore associations between prespecified explanatory variables and gender dysphoria. Appropriate regression models will also be used to investigate explanatory variables for other outcomes. Subgroup analyses based on birth-assigned gender, age at referral and co-occurring autistic traits will be explored., Ethics and Dissemination: The study has been approved by the Health Research Authority and London - Hampstead Research Ethics Committee (reference: 19/LO/0857). The study findings will be published in peer-reviewed journals and presented at both conferences and stakeholder events. Findings will be used to inform clinical practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)

Aim: To determine undergraduate medical students' teaching preferences and expectations for Culinary Medicine (CM) learning with a view to informing development of a CM course at a UK medical school., Setting: A single, urban UK medical school., Participants: 180 undergraduate medical students., Study Design: A cross-sectional questionnaire study collecting quantitative and qualitative (free-text) data., Methods and Outcome Measures: An online questionnaire consisting of 16 questions of various styles (Likert-type, multiple choice and free-text). Quantitative analysis of multiple choice and Likert-type scale questions was conducted. Qualitative thematic analysis was used to analyse the free-text responses and identify themes., Results: Three core themes related to students' understanding of CM were identified: (1) 'CM Learning': students' perceived relevance of CM knowledge, perceived relevance of CM to healthcare and their expectations for teaching; (2) 'The Relationship between Food and Health': links between diet, social factors and health; and (3) 'Evidence-based Medicine': students' perceptions about scientific principles underlying CM. Quantitative analysis revealed that, although 83% of students felt that learning CM is important for their future clinical practice, 56% felt unable to take a dietary history. 73% of students were dissatisfied with the quality, and 78% were dissatisfied with the quantity, of existing medical school teaching understood to be relevant to CM. Topics that students would like to be taught on a CM course included weight management and portion control. Students felt that problem-based style learning would be the most appropriate method for delivering CM teaching., Conclusions: This study revealed that medical students felt their dietary counsulting skills could be improved with further clinically relevant teaching in the undergraduate medical curriculum. Students' preferences for CM learning have been taken into consideration in the development of a CM course for fifth-year undergraduate students at a UK medical school, which is delivered during their General Practice placement., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Background: Newly diagnosed open-angle glaucoma (OAG) and ocular hypertension (OHT) are habitually treated with intraocular pressure (IOP)-lowering eyedrops. Selective laser trabeculoplasty (SLT) is a safe alternative to drops and is rarely used as first-line treatment., Objectives: To compare health-related quality of life (HRQoL) in newly diagnosed, treatment-naive patients with OAG or OHT, treated with two treatment pathways: topical IOP-lowering medication from the outset (Medicine-1st) or primary SLT followed by topical medications as required (Laser-1st). We also compared the clinical effectiveness and cost-effectiveness of the two pathways., Design: A 36-month pragmatic, unmasked, multicentre randomised controlled trial., Settings: Six collaborating specialist glaucoma clinics across the UK., Participants: Newly diagnosed patients with OAG or OHT in one or both eyes who were aged ≥ 18 years and able to provide informed consent and read and understand English. Patients needed to qualify for treatment, be able to perform a reliable visual field (VF) test and have visual acuity of at least 6 out of 36 in the study eye. Patients with VF loss mean deviation worse than -12 dB in the better eye or -15 dB in the worse eye were excluded. Patients were also excluded if they had congenital, early childhood or secondary glaucoma or ocular comorbidities; if they had any previous ocular surgery except phacoemulsification, at least 1 year prior to recruitment or any active treatment for ophthalmic conditions; if they were pregnant; or if they were unable to use topical medical therapy or had contraindications to SLT., Interventions: SLT according to a predefined protocol compared with IOP-lowering eyedrops, as per national guidelines., Main Outcome Measures: The primary outcome was HRQoL at 3 years [as measured using the EuroQol-5 Dimensions, five-level version (EQ-5D-5L) questionnaire]. Secondary outcomes were cost and cost-effectiveness, disease-specific HRQoL, clinical effectiveness and safety., Results: Of the 718 patients enrolled, 356 were randomised to Laser-1st (initial SLT followed by routine medical treatment) and 362 to Medicine-1st (routine medical treatment only). A total of 652 (91%) patients returned the primary outcome questionnaire at 36 months. The EQ-5D-5L score was not significantly different between the two arms [adjusted mean difference (Laser-1st - Medicine-1st) 0.01, 95% confidence interval (CI) -0.01 to 0.03; p  = 0.23] at 36 months. Over 36 months, the proportion of visits at which IOP was within the target range was higher in the Laser-1st arm (93.0%, 95% CI 91.9% to 94.0%) than in the Medicine-1st arm (91.3%, 95% CI 89.9% to 92.5%), with IOP-lowering glaucoma surgery required in 0 and 11 patients, respectively. There was a 97% probability of Laser-1st being more cost-effective than Medicine-1st for the NHS, at a willingness to pay for a quality-adjusted life-year of £20,000, with a reduction in ophthalmology costs of £458 per patient (95% of bootstrap iterations between -£585 and -£345)., Limitation: An unmasked design, although a limitation, was essential to capture any treatment effects on patients' perception. The EQ-5D-5L questionnaire is a generic tool used in multiple settings and may not have been the most sensitive tool to investigate HRQoL., Conclusions: Compared with medication, SLT provided a stable, drop-free IOP control to 74.2% of patients for at least 3 years, with a reduced need for surgery, lower cost and comparable HRQoL. Based on the evidence, SLT seems to be the most cost-effective first-line treatment option for OAG and OHT, also providing better clinical outcomes., Future Work: Longitudinal research into the clinical efficacy of SLT as a first-line treatment will specify the long-term differences of disease progression, treatment intensity and ocular surgery rates between the two pathways., Trial Registration: Current Controlled Trials ISRCTN32038223., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 23, No. 31. See the NIHR Journals Library website for further project information., Competing Interests: Gus Gazzard, David Garway-Heath, Rachael Hunter, Gareth Ambler, Catey Bunce, Richard Wormald, Keith Barton, Gary Rubin and Marta Buszewicz have received a grant from the National Institute for Health Research (NIHR) for the submitted work. Gus Gazzard reports grants from Lumenis (Borehamwood, UK) during the conduct of the study; grants from Ellex Medical Lasers (Adelaide, SA, Australia), Ivantis, Inc. (Irvine, CA, USA) and Thea Pharmaceuticals (Keele, UK) outside the submitted work; and personal fees from Allergan (Dublin, Ireland), Alcon (Fort Worth, TX, USA), Glaukos Corporation (San Clemente, CA, USA), Santen Pharmaceutical Co., Ltd (Osaka, Japan) and Thea Pharmaceuticals outside the submitted work. David Garway-Heath reports personal fees from Aerie Pharmaceuticals, Inc. (Durham, NC, USA), Alcon, Allergan, Bausch + Lomb (Rochester, NY, USA), Quark Pharmaceuticals, Inc. (Ness Ziona, Israel), Quethera Limited and Roche (Basel, Switzerland); grants from the Alcon Research Institute; and grants and personal fees from Pfizer (New York, NY, USA) and Santen Pharmaceutical Co., Ltd, outside the submitted work. In addition, David Garway-Heath was a member of the Health Technology Assessment (HTA) Clinical Trials Board from 2014 to 2017. Keith Barton received a grant from NIHR for the Treatment of Advanced Glaucoma Study during the conduct of the study. In addition, Keith Barton reports grants from Johnson & Johnson Vision (Santa Ana, CA, USA), New World Medical (Rancho Cucamonga, CA, USA), Alcon, Merck & Co. (Kenilworth, NJ, USA), Allergan and Refocus Group (Dallas, TX, USA); that he has had other financial relationships with Alcon, Merck & Co., Allergan, Refocus, AqueSys Inc. (Taipei, Taiwan), Ivantis, Carl Zeiss Meditec AG (Jena, Germany), Kowa Europe GmbH (Düsseldorf, Germany), Santen Pharmaceutical Co., Ltd, Transcend Medical (Scottsboro, AL, USA), Glaukos (San Clemente, CA, USA), Amakem NV (Diepenbeek, Belgium), Thea Pharmaceuticals, Alimera Sciences (Alpharette, GA, USA), Pfizer, Advanced Ophthalmic Implants Pte Ltd (Singapore), Vision Futures (UK) Ltd (London, UK), London Claremont Clinic Ltd (London, UK) and Vision Medical Events Ltd (London, UK), outside the submitted work; and that he has a patent with Ophthalmic Implants (PTE) Ltd. Stephen Morris was a member of NIHR Health Services and Delivery Research (HSDR) Research Funding Board (2014–19), the NIHR HSDR Commissioned Board (2014–16), the NIHR HSDR Evidence Synthesis Sub Board (2016), the NIHR HTA Clinical Evaluation and Trials Board (2007–10), the NIHR HTA Commissioning Board (2009–13), the NIHR Public Health Research Funding Board (2011–17) and the NIHR Programme Grants for Applied Research expert subpanel (2017–present). Marta Buszewicz was a member of the HTA Mental Health Panel from January to May 2018. In September 2018 this panel was amalgamated into the HTA Prioritisation Committee C (mental health, women and children’s health), of which Marta Buszewicz was also a member. Marta Buszewicz has also been a member of the NIHR Research for Patient Benefit, London, funding panel since May 2017.

Background: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions., Methods: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance., Discussion: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice., Trial Registration: Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered.

Background: More accurate methods of prognostication are likely to lead to improvements in the quality of care of patients approaching the ends of their lives. The Prognosis in Palliative care Scales (PiPS) are prognostic models of survival. The scores are calculated using simple clinical data and observations. There are two separate PiPS models; PiPS-A for patients without blood test results and PiPS-B for patients with blood test results. Both models predict whether a patient is likely to live for "days", "weeks" or "months" and have been shown to perform as well as clinicians' estimates of survival. PiPS-B has also been found to be significantly better than doctors' estimates of survival. We report here a protocol for the validation of PiPS and for the evaluation of the accuracy of other prognostic tools in a new, larger cohort of patients with advanced cancer., Methods: This is a national, multi-centre, prospective, observational cohort study, aiming to recruit 1778 patients via palliative care services across England and Wales. Eligible patients have advanced, incurable cancer and have recently been referred to palliative care services. Patients with or without capacity are included in the study. The primary outcome is the accuracy of PiPS predictions and the difference in accuracy between these predictions and the clinicians' estimates of survival; with PiPS-B being the main model of interest. The secondary outcomes include the accuracy of predictions by the Palliative Prognostic Index (PPI), Palliative Performance Scale (PPS), Palliative Prognostic score (PaP) and the Feliu Prognostic Nomogram (FPN) compared with actual patient survival and clinicians' estimates of survival. A nested qualitative sub-study using face-to-face interviews with patients, carers and clinicians is also being undertaken to assess the acceptability of the prognostic models and to identify barriers and facilitators to clinical use., Discussion: The study closed to recruitment at the end of April 2018 having exceeded the required sample size of 1778 patients. The qualitative sub-study is nearing completion. This demonstrates the feasibility of recruiting large numbers of participants to a prospective palliative care study., Trial Registration: ISRCTN13688211 (registration date: 28/06/2016).