Enhanced supportive care in cancer centres: national cross-sectional survey.

OBJECTIVES: 'Early' specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. 'Enhanced supportive care' (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians' understanding of ESC/SPC delivery through description of current service provision. METHODS: This national cross-sectional survey of 53 cancer centres had two parts. Part 1: Service details, was directed to lead ESC/SPC nurses or consultants about service configuration, and Part 2: Clinician understanding, targeting conceptual understanding of service aims including ESC/SPC teams and oncology consultants (n=262 surveys). Multiple-choice questions explored service provision, referral triggers and evidence of integration with oncology, with free-text responses. Quantitative results were analysed with Fischer's exact test. Qualitative free text was line-by-line coded by two authors independently to derive themes. RESULTS: 56% (30/53) of SPC and ESC teams and 14% (14/100) of oncologists responded. Those involved in ESC self-reported greater integration with oncology compared with non-ESC teams, for example, joint case discussions (64.3%, 9/14 vs 23.1%, 3/13, p=0.05), and timelier patient referral ((>6 months before death vs <6 months) (10/14 vs 4/13, p=0.06)). Qualitative themes described ambiguity in definitions of supportive and palliative terms and a perception of timelier identification of patients when ESC was involved. CONCLUSION: Providers of ESC perceive greater integration with oncology and potentially timelier referral for patients compared with teams not delivering ESC. Terminology around SPC and ESC remains uncertain across England.

Qualified and motivated, but limited by specialty-specific barriers: a national survey of UK Palliative Medicine consultants research experience.

OBJECTIVES: Providing high-quality safe palliative care requires high-quality clinically driven research. Little is known about how to optimise clinical research capacity in this field.To understand interest and capacity to conduct clinical research in palliative medicine and identify key facilitators and barriers, by surveying palliative medicine consultants and academic trainees. METHODS: National online survey exploring experience in conducting research, including facilitators and barriers. Sent to all current UK palliative medicine consultants, and previous/current academic trainees. Descriptive statistics are reported with framework analysis of free text responses. RESULTS: 195 surveys were submitted including 15 respondents with Integrated Academic Training (IAT) experience. 78% (n=140/180) of consultants were interested in conducting research. Despite this enthusiasm, 83% had no allocated time within their job plan. 88% of those who undertook IAT would recommend IAT, but 60% reported difficulty transitioning from academic trainee to research active consultant.Barriers to research included; insufficient research culture and integration, with small teams working in a mixture of National Health Service (NHS) and non-NHS settings, leading to isolated, silo working. Even those who had undertaken IAT, felt a 'cliff edge' in opportunities after completing IAT. Filling service gaps was routinely prioritised over research activity. CONCLUSION: Palliative medicine consultants, including those who have completed academic training want to conduct research but overwhelming barriers limit activity. A palliative care-specific strategy that permeates different palliative care settings, promotes interspecialty collaboration and improves the current infrastructure for palliative care research to maximise gains from IAT and embed a research culture are suggested.

Novel methods to define invasive procedures at the end of life were developed to improve quality of end of life care research: a population-based cohort study in colorectal cancer.

BACKGROUND: Understanding the use of invasive procedures (IPs) at the end of life (EoL) is important to avoid undertreatment and overtreatment, but epidemiologic analysis is hampered by limited methods to define treatment intent and EoL phase. This study applied novel methods to report IPs at the EoL using a colorectal cancer case study. METHODS: An English population-based cohort of adult patients diagnosed between 2013 and 2015 was used with follow-up to 2018. Procedure intent (curative, noncurative, diagnostic) by cancer site and stage at diagnosis was classified by two surgeons independently. Joinpoint regression modeled weekly rates of IPs for 36 subcohorts of patients with incremental survival of 0-36 months. EoL phase was defined by a significant IP rate change before death. Zero-inflated Poisson regression explored associations between IP rates and clinical/sociodemographic variables. RESULTS: Of 87,731 patients included, 41,972 (48%) died. Nine thousand four hundred ninety two procedures were classified by intent (inter-rater agreement 99.8%). Patients received 502,895 IPs (1.39 and 3.36 per person year for survivors and decedents). Joinpoint regression identified significant increases in IPs 4 weeks before death in those living 3-6 months and 8 weeks before death in those living 7-36 months from diagnosis. Seven thousand nine hundred eight (18.8%) patients underwent IPs at the EoL, with stoma formation the most common major procedure. Younger age, early-stage disease, men, lower comorbidity, those receiving chemotherapy, and living longer from diagnosis were associated with IPs. CONCLUSION: Methods to identify and classify IPs at the EoL were developed and tested within a colorectal cancer population. This approach can be now extended and validated to identify potential undertreatment and overtreatment.

Training surgeons to optimize communication and symptom management in patients with life-limiting conditions: systematic review.

BACKGROUND: Surgeons routinely care for patients with life-limiting illness, requiring communication and symptom management skills supported by appropriate training. The objective of this study was to appraise and synthesize studies that assessed surgeon-directed training interventions that aimed to optimize communication and symptom management for patients with life-limiting illness. METHODS: A PRISMA-concordant systematic review was undertaken. MEDLINE, Embase, Allied and Complementary Medicine Database (AMED), and the Cochrane Central Register of Controlled Trials were searched from inception until October 2022 for studies reporting on the evaluation of surgeon-training interventions intending to improve surgeons' communication or symptom management of patients with life-limiting disease. Data on the design, trainer and patient participants, and the intervention were extracted. Risk of bias was assessed. RESULTS: Of 7794 articles, 46 were included. Most studies employed a before-after approach (29 studies) and nine included control groups with five being randomized studies. General surgery was the most frequently included sub-specialty (22 studies). Trainers were described in 25 of 46 studies. Most training interventions aimed to improve communication skills (45 studies) and 13 different training interventions were described. Eight studies reported a measurable improvement in patient care, such as increased documentation of advance care discussions. Most study outcomes focused on surgeons' knowledge (12 studies), skills (21 studies), and confidence/comfort (18 studies) in palliative communication skills. Studies had a high risk of bias. CONCLUSION: Whilst interventions exist to improve the training of surgeons managing patients with life-threatening conditions, evidence is limited, and studies measure the direct impact on patient care insufficiently. Improved research is needed to lead to better methods for training surgeons to benefit patients.

Right needle, right patient, right time? A national flash-mob audit of thromboprophylaxis in palliative care.

BACKGROUND: The prevention of hospital associated thrombosis in palliative care remains controversial yet many countries recommend the documented risk assessment and where appropriate pharmacological prophylaxis of inpatients with advanced cancer. AIM: To audit adherence to national guidelines which require hospitalised patients to be risk assessed and receive appropriate thromboprophylaxis. DESIGN: A one day "flash-mob" audit across multiple clinical inpatient sites across the United Kingdom. SETTING/PARTICIPANTS: Inpatients receiving palliative care within hospitals, hospices and specialist palliative care units across the United Kingdom. RESULTS: Data were collected from 1125 patients (514 hospital and 611 hospice/specialist palliative care units). Appropriate thromboprophylaxis was observed in 90 % of hospital and 90 % hospice/specialist palliative care units. Documented risk assessment was only found in 79 % and 71 % of patient notes respectively. Pharmacological thromboprophylaxis was contraindicated in 88 % of hospice/specialist palliative care unit patients due to bleeding risk or receiving end-of-life care. Twenty-four percent of patients in hospital had contraindications due to receiving end of life care, bleeding risk and thrombocytopenia. Patients in hospice/specialist palliative care units were of poorer performance status prior to admission with a history of gradual deterioration. Hospitalised patients were more likely to have been admitted following an acute deterioration of previous good performance status. CONCLUSION: Thromboprophylaxis guidelines were followed correctly for the majority of patients. There were considerable differences in the demographics of patients according to place of admission. Patients admitted to hospice/specialist palliative care units were sicker and had more contraindications to prophylaxis than those admitted to hospital. Thromboprophylaxis focused research data conducted in hospices is unlikely to be applicable to the care of palliative care patients admitted acutely to hospital.

UK Palliative trainees Research Collaborative (UK-PRC): the first 5 years - 0-100 study sites.

OBJECTIVES: Palliative care research suffers from underfunding and a workforce spread across multiple settings leading to a lack of large-scale studies. To facilitate multisite research and audit we set up the UK Palliative trainees Research Collaborative (UKPRC), the first national trainee-led audit and research collaborative in palliative care. Here, we critically review the progress and potential of the UKPRC since its inception in 2016, identifying key challenges and facilitators. Members of the UKPRC steering committee collaborated to write this reflection, reviewing existing evidence regarding trainee-led research collaboratives. FINDINGS: The UKPRC has representation from 16/19 UK training regions. Projects are run by a core team; local collaborators collect data at each site. The collaborative is supported by academic leads and newly qualified consultants to develop a culture of continuous improvement in practice. We have conducted four national projects to date, including an audit covering 119 sites. Facilitators for our work include a focus on inclusivity and national representation; support from recently qualified consultants to ensure continuity; and taking a pragmatic approach, focusing initially on straightforward projects to build momentum. Challenges include the step from national audit to multisite, patient-facing research and maintaining continuity in a membership with high turnover. CONCLUSIONS: There is potential to change practice through large scale data collection via the trainee-led collaborative model. Collaboration is especially important in a small specialty with limited resources. The UKPRC has demonstrated 'proof of concept' and has the potential to support and sustain a culture where research can flourish within palliative care.

Modelling palliative and end-of-life resource requirements during COVID-19: implications for quality care.

OBJECTIVES: The WHO estimates that the COVID-19 pandemic has led to more than 1.3 million deaths (1 377 395) globally (as of November 2020). This surge in death necessitates identification of resource needs and relies on modelling resource and understanding anticipated surges in demand. Our aim was to develop a generic computer model that could estimate resources required for end-of-life (EoL) care delivery during the pandemic. SETTING: A discrete event simulation model was developed and used to estimate resourcing needs for a geographical area in the South West of England. While our analysis focused on the UK setting, the model is flexible to changes in demand and setting. PARTICIPANTS: We used the model to estimate resourcing needs for a population of around 1 million people. PRIMARY AND SECONDARY OUTCOME MEASURES: The model predicts the per-day 'staff' and 'stuff' resourcing required to meet a given level of incoming EoL care activity. RESULTS: A mean of 11.97 hours of additional community nurse time, up to 33 hours of care assistant time and up to 30 hours additional care from care assistant night sits will be required per day as a result of out of hospital COVID-19 deaths based on the model prediction. Specialist palliative care demand is predicted to increase up to 19 hours per day. An additional 286 anticipatory medicine bundles per month will be necessary to alleviate physical symptoms at the EoL care for patients with COVID-19: an average additional 10.21 bundles of anticipatory medication per day. An average additional 9.35 syringe pumps could be needed to be in use per day. CONCLUSIONS: The analysis for a large region in the South West of England shows the significant additional physical and human resource required to relieve suffering at the EoL as part of a pandemic response.

COVID-19, palliative care and public health.

The lack of integration between public health approaches, cancer care and palliative and end-of-life care in the majority of health systems globally became strikingly evident in the context of the coronavirus disease 2019 (COVID-19) pandemic. At the same time, the collapse of the boundaries between these domains imposed by the pandemic created unique opportunities for intersectoral planning and collaboration. While the challenge of integration is not unique to oncology, the organisation of cancer care and its linkages to palliative care and to global health may allow it to be a demonstration model for how the problem of integration can be addressed. Before the pandemic, the large majority of individuals with cancer in need of palliative care in low- and middle-income countries and the poor or marginalised in high-income countries were denied access. This inequity was highlighted by the COVID-19 pandemic, as individuals in impoverished or population-dense settings with weak health systems have been more likely to become infected and to have less access to medical care and to palliative and end-of-life care. Such inequities deserve attention by government, financial institutions and decision makers in health care. However, there has been no framework in most countries for integrated decision-making that takes into account the requirements of public health, clinical medicine and palliative and end-of-life care. Integrated planning across these domains at all levels would allow for more coordinated resource allocation and better preparedness for the inevitability of future systemic threats to population health.

Bereavement Support on the Frontline of COVID-19: Recommendations for Hospital Clinicians.

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support.

"What's fair to an individual is not always fair to a population": A qualitative study of patients and their health professionals using the Cancer Drugs Fund.

OBJECTIVE: To understand the values attached to cancer treatment at the end of life (EoL) to inform policy decisions around the Cancer Drugs Fund (CDF) and the National Institute for Health and Care Excellence (NICE) EoL criterion. DESIGN: Semi-structured interviews with patients and health professionals. Purposive recruitment was performed iteratively alongside analysis of interview transcripts using constant comparison. PARTICIPANTS: Patients with incurable prostate and colorectal cancer (n = 22) who received drugs funded through the CDF and oncologists and palliative care professionals (n = 16) treating patients on CDF drugs. RESULTS: While the majority of patient and oncologist participants expressed gratitude for access to the CDF, some patient participants reported experiencing a sense of guilt, and many oncologists admitted to concern about the justice of a ring-fenced fund solely for anti-cancer drugs. For patient and professional participants, cancer drugs were not necessarily seen as a funding priority over other calls on the NHS purse. Overall, patients and health professionals emphasised prioritising quality over quantity at the end of life, with only a minority describing improved quality of life at the end of life which added value. CONCLUSION: While patients and oncologists appreciated the drugs available through the CDF, most expressed concern about its fairness. Competing participant views about the added value of the end of life is challenging for resource allocation.

UK newspaper reporting of the NHS cancer drugs fund, 2010 to 2015: a retrospective media analysis.

Objective We wished to explore how UK national newspapers had covered the creation and operation of the Cancer Drugs Fund from 2010 to 2015. This was introduced to provide cancer patients in England with access to drugs not appraised or approved by the National Institute for health and Care Excellence. Design We sought stories in nine newspapers from the Factiva database, and copied their salient details to a spreadsheet. They were categorised by whether they were supportive or critical of the Cancer Drugs Fund and their main arguments, which drugs they mentioned and for which cancers. Settings Not applicable Participants Not applicable Main outcome results Press coverage was mainly very positive, arguing for the Cancer Drugs Fund's extension to Scotland and Wales, and a bigger budget, but neglecting the lack of patient benefit and the severe side effects that sometimes occurred. Leading this support was the Daily Mail, whose influence (measured by the product of number of stories and the paper's circulation) was almost greater than that of the other newspapers combined. Results Press coverage was mainly very positive, arguing for the Cancer Drugs Fund's extension to Scotland and Wales, and a bigger budget, but neglecting the lack of patient benefits and the severe side effects that sometimes occurred. Leading this support was the Daily Mail, whose influence (measured by the product of number of stories and the paper's circulation) was almost greater than that of the other newspapers combined. Conclusions Although there was some critical analysis of the Cancer Drugs Fund, our analysis shows that most press coverage was largely positive and unrepresentative in comparison with the lack of overall benefits to patients and society. It is likely that it contributed to the Cancer Drugs Fund's continuation despite mounting evidence of its ineffectiveness.

Did It Matter That the Cancer Drugs Fund Was Not NICE? A Retrospective Review.

BACKGROUND: The Cancer Drugs Fund (CDF) will have spent more than £1 billion between October 2010 and the introduction of reforms to its structure and operations in July 2016. There has been much more debate about the existence of the fund than about how it spent its substantial budget. It is important to undertake a retrospective examination of "where the money went" in light of the substantial reforms that will be introduced in 2016. OBJECTIVES: We review the means by which the CDF made recent funding decisions for cancer drugs to provide an assessment of the merits of the CDF "model" as a basis for allocation decisions. We assess the extent to which proposed reforms could overcome defects in the original CDF model of prioritization, and lessons for other countries. METHODS: We provide a narrative commentary on CDF's methods and processes since 2014. We evaluate methods against best practice in cost-effectiveness analysis, and processes against the "accountability for reasonableness" framework. We comment on reforms to the fund. RESULTS: There are no grounds for concluding that the opportunity costs imposed on cancer patients were well evidenced, or the product of legitimate deliberative processes. We note that some of these issues will be addressed in the next incarnation of the fund, but the rationale for the fund's existence remains unconvincing. CONCLUSIONS: It is important and timely to debate how cancer drugs appraisal ought to be conducted to confront the consequences of CDF's model of appraisal. We conclude that it did matter that the CDF was not NICE.

A systematic review of geographical variation in access to chemotherapy.

BACKGROUND: Rising cancer incidence, the cost of cancer pharmaceuticals and the introduction of the Cancer Drugs Fund in England, but not other United Kingdom(UK) countries means evidence of 'postcode prescribing' in cancer is important. There have been no systematic reviews considering access to cancer drugs by geographical characteristics in the UK. METHODS: Studies describing receipt of cancer drugs, according to healthcare boundaries (e.g. cancer network [UK]) were identified through a systematic search of electronic databases and grey literature. Due to study heterogeneity a meta-analysis was not possible and a narrative synthesis was performed. RESULTS: 8,780 unique studies were identified and twenty-six included following a systematic search last updated in 2015. The majority of papers demonstrated substantial variability in the likelihood of receiving chemotherapy between hospitals, health authorities, cancer networks and UK countries (England and Wales). After case-mix adjustment, there was up to a 4-5 fold difference in chemotherapy utilisation between the highest and lowest prescribing cancer networks. There was no strong evidence that rurality or distance travelled were associated with the likelihood of receiving chemotherapy and conflicting evidence for an effect of travel time. CONCLUSIONS: Considerable variation in chemotherapy prescribing between healthcare boundaries has been identified. The absence of associations with natural geographical characteristics (e.g. rurality) and receipt of chemotherapy suggests that local treatment habits, capacity and policy are more influential.

Trends in procedures for infertility and caesarean sections: was NICE disinvestment guidance implemented? NICE recommendation reminders.

BACKGROUND: National Institute for Health and Clinical Excellence (NICE) clinical guidelines and subsequent NICE issued 'recommendation reminders' advocate discontinuing two fertility procedures and caesarean sections in women with hepatitis. We assess whether NICE guidance in 2004 and recommendation reminders were associated with a change in the rate of clinical procedures performed. METHODS: Routine inpatient Hospital Episode Statistics (HES) data were extracted from the HES database for 1st April 1998 to 31st March 2010 using OPCS procedure codes for varicocele operations in infertile men, endometrial biopsies in infertile women and caesarean sections in women with hepatitis B or C. We used Joinpoint regression to identify points in time when the trend in procedure rates changed markedly, to identify any influence of the release of NICE guidance. RESULTS: Between 1998-2010, planned caesarean sections in women with and without hepatitis B or C increased yearly (annual percentage change (APC) 4.9%, 95% CI 2.1% to 7.7%) in women with hepatitis, compared with women without (APC 4.0% [95% CI 2.7% to 5.3%] up to 2001, APC -0.6% [95% CI -2.8% to 1.8%] up to 2004 and 1.3% [95% CI 0.8% to 1.8%] up to 2010). In infertile women under 40 years of age, endometrial biopsies for investigation of infertility increased, APC 6.0% (95% CI 3.6% to 8.4%) up to 2003, APC 1.5% (95% CI -4.3% to 7.7%) to 2007 followed by APC 12.8% (95% CI 1.0% to 26.0%) to 2010. Varicocele procedures remained relatively static between 1998 and 2010 (APC -0.5%, 95% CI -2.3% to 1.3%). CONCLUSIONS: There was no decline in use of the three studied procedures, contrary to NICE guidance, and no change in uptake associated with the timing of NICE guidance or recommendation reminders. 'Do not do' recommendation reminders may be ineffective at improving clinical practice or achieving disinvestment.

The association of weight gain during adulthood with prostate cancer incidence and survival: a population-based cohort.

Obese men appear to have an increased risk of being diagnosed with advanced prostate cancer and of dying from the disease. Few studies have examined the impact of weight gain during adulthood on prostate cancer risk and mortality and these have reported conflicting results. We analysed data from 20,991 Norwegian men who participated in two phases of the Nord-Trøndelag Health Study in 1984/1986 (HUNT-1, when aged at least 20 years) and 1995/1997 (HUNT-2). Weight and height were measured at both HUNT-1 and HUNT-2, allowing each man's change in weight and body mass index (BMI) to be computed. During a median of 9.3 years of follow-up after the end of HUNT-2, 649 (3%) men developed prostate cancer. We observed no increase in prostate cancer incidence amongst men who put on weight between HUNT-1 and HUNT-2. In multivariable models, including adjustment for weight at HUNT-2, the hazard ratio (HR) for prostate cancer per one standard deviation, SD (6.2 kg) gain in weight was 0.98 (95% confidence interval [95% CI]=0.87-1.10, p-trend=0.70) and per one SD gain in BMI (1.9 kg/m(2) ) was 0.99 (95% CI=0.90-1.10, p-trend=0.88). Amongst men diagnosed with prostate cancer (any stage), there was no evidence that gain in weight before diagnosis was positively associated with subsequent all-cause mortality (HR per one SD increase in weight=0.98; 95% CI=0.81-1.19, p-trend=0.86). We conclude that weight gain in adulthood had no effect on prostate cancer incidence or survival in this population.