Evaluation design of the patient-centred pathways of early palliative care, supportive ecosystems and appraisal standard (InAdvance): a randomised controlled trial.

BACKGROUND: Palliative care aims to contribute to pain relief, improvement with regard to symptoms and enhancement of health-related quality of life (HRQoL) of patients with chronic conditions. Most of the palliative care protocols, programmes and units are predominantly focused on patients with cancer and their specific needs. Patients with non-cancer chronic conditions may also have significantly impaired HRQoL and poor survival, but do not yet receive appropriate and holistic care. The traditional focus of palliative care has been at the end-of-life stages instead of the relatively early phases of serious chronic conditions. The 'Patient-centred pathways of early palliative care, supportive ecosystems and appraisal standard' (InAdvance) project implements and evaluates early palliative care in the daily clinical routine addressing patients with complex chronic conditions in the evolution towards advanced stages. The objective of the current study is to evaluate the acceptability, feasibility, effectiveness and cost-effectiveness of this novel model of palliative care in the relatively early phases in patients with chronic conditions. METHODS: In this study, a single blind randomised controlled trial design will be employed. A total of 320 participants (80 in each study site and 4 sites in total) will be randomised on a 1:1 basis to the Palliative Care Needs Assessment (PCNA) arm or the Care-as-Usual arm. This study includes a formative evaluation approach as well as a cost-effectiveness analysis with a within-trial horizon. Study outcomes will be assessed at baseline, 6 weeks, 6 months, 12 months and 18 months after the implementation of the interventions. Study outcomes include HRQoL, intensity of symptoms, functional status, emotional distress, caregiving burden, perceived quality of care, adherence to treatment, feasibility, acceptability, and appropriateness of the intervention, intervention costs, other healthcare costs and informal care costs. DISCUSSION: The InAdvance project will evaluate the effect of the implementation of the PCNA intervention on the target population in terms of effectiveness and cost-effectiveness in four European settings. The evidence of the project will provide step-wise guidance to contribute an increased evidence base for policy recommendations and clinical guidelines, in an effort to augment the supportive ecosystem for palliative care. TRIAL REGISTRATION: ISRCTN, ISRCTN24825698 . Registered 17/12/2020.

Developing learning outcomes for medical students and foundation doctors in palliative care: a national consensus-seeking initiative in Scotland.

BACKGROUND: Undergraduate education in palliative care is essential if doctors are to be competent to care for dying patients and their families in a range of specialties and healthcare settings. However, creating space for this within existing undergraduate and foundation year curricula poses significant challenges. We aimed to develop consensus learning outcomes for palliative care teaching in the university medical schools in Scotland. METHODS: The General Medical Council (GMC) outlines a number of learning outcomes with clear relevance to palliative care. Leaders from the five Scottish medical schools identified and agreed a small number of outcomes, which we judged most relevant to teaching palliative care and collated teaching resources to support these. RESULTS: Consensus learning outcomes for undergraduate palliative care were agreed by our mixed group of clinician educators over a number of months. There were many secondary gains from this process, including the pooling of educational resources and best practice, and the provision of peer support for those struggling to establish curriculum time for palliative care. DISCUSSION: The process and outcomes were presented to the Scottish Teaching Deans, with a view to their inclusion in undergraduate and foundation year curricula. It is through a strong commitment to achieving these learning outcomes that we will prepare all doctors for providing palliative care to the increasing numbers of patients and families that require it.

Complementary frailty and mortality prediction models on older patients as a tool for assessing palliative care needs.

Palliative care (PC) has demonstrated benefits for life-limiting illnesses. Bad survival prognosis and patients' decline are working criteria to guide PC decision-making for older patients. Still, there is not a clear consensus on when to initiate early PC. This work aims to propose machine learning approaches to predict frailty and mortality in older patients in supporting PC decision-making. Predictive models based on Gradient Boosting Machines (GBM) and Deep Neural Networks (DNN) were implemented for binary 1-year mortality classification, survival estimation and 1-year frailty classification. Besides, we tested the similarity between mortality and frailty distributions. The 1-year mortality classifier achieved an Area Under the Curve Receiver Operating Characteristic (AUC ROC) of 0.87 [0.86, 0.87], whereas the mortality regression model achieved an mean absolute error (MAE) of 333.13 [323.10, 342.49] days. Moreover, the 1-year frailty classifier obtained an AUC ROC of 0.89 [0.88, 0.90]. Mortality and frailty criteria were weakly correlated and had different distributions, which can be interpreted as these assessment measurements are complementary for PC decision-making. This study provides new models that can be part of decision-making systems for PC services in older patients after their external validation.

Palliative Care Needs and Integration of Palliative Care Support in COPD: A Qualitative Study.

BACKGROUND: The provision of palliative care for severe COPD remains low, resulting in unmet needs in patients and carers. RESEARCH QUESTIONS: What are the palliative care needs of patients living with severe COPD and their caregivers? What views of accessing and providing palliative care and factors influence these experiences. To what extent have palliative care and COPD services been integrated? STUDY DESIGN AND METHODS: A multicentre qualitative study was undertaken in COPD services and specialist palliative care in the United Kingdom involving patients with severe COPD, their carers, and health professionals. Data were collected using semistructured interviews and were analyzed using framework analysis. Themes were integrated using the constant comparison process, enabling systematic data synthesis. RESULTS: Four themes were generated from interviews with 20 patients, six carers, and 25 health professionals: management of exacerbations, palliative care needs, access to palliative care and pathways, and integration of palliative care support. Uncertainty and fear were common in patients and carers, with identified needs for reassurance, rapid medical access, home care, and finance advice. Timely palliative care was perceived as important by health professionals. Palliative care was integrated into COPD services, although models of working varied across regions. Reliable screening tools and needs assessment, embedded psychological care, and enhanced training in palliative care and communication skills were perceived to be important by health professionals for timely palliative care referrals and optimized management. INTERPRETATION: Palliative care increasingly is being implemented for nonmalignant diseases including COPD throughout the United Kingdom, although models of working vary. A theoretical model was developed to illustrate the concept and pathway of the integration of palliative care support. A standardized screening and needs assessment tool is required to improve timely palliative care and to address the significant needs of this population.

Introducing the Palliative Performance Scale to clinicians: the Grampian experience.

OBJECTIVES: The Palliative Performance Scale (PPS) was introduced across NHS Grampian. Our aim was to determine how practical and useful the PPS was for clinicians looking after palliative patients in a variety of settings. METHODS: A prospective audit approach was used in primary, secondary and nursing home care settings who. Demographic and assessment data were gathered for 3 months; feedback was gathered at the end of the data collection phase. Patient follow-up status was determined at 12 months. RESULTS: Fifteen clinical sites participated and feedback was obtained from all clinical areas (n=30). Most respondents found the PPS easy to use and that it helped recognise disease progression in cancer patients, but not in patients with dementia/frailty. Assessment data were gathered on 666 patients. Sixty per cent had a malignant diagnosis and 62.5% of the sample died within 12 months. Lower PPS scores at initial assessment indicated poorer prognosis. Median survival figures differed from previously published data. Falling PPS scores increased the risk of death compared with patients whose PPS scores remained static or improved. CONCLUSION: Clinicians found the PPS to be a quick, useful way of assessing and reviewing functional changes in palliative patients. However, it may not identify the subtle changes in individuals with advanced dementia. The survival figures confirm that caution is needed in generalising survival data across different settings and populations. Further work is needed to examine changing functional status in patients with non-malignant diseases or dementia/frailty.