Quality of life, healthcare usage and finances of UK cancer survivors five years post-diagnosis: a matched controlled study.

Purpose: Assessing the long-term impact of cancer on people's lives is challenging due to confounding issues such as aging and comorbidities. We aimed to investigate this impact by comparing the outcomes of cancer survivors with a matched control cohort.

Methods: This was a cross-sectional survey of breast, colorectal and ovarian cancer survivors approximately 5 years post-diagnosis and a cohort of age, sex and social deprivation-matched controls who had never had a cancer diagnosis.

Somebody who understands the culture and their needs that can cater for them in their retirement time: a peer research study exploring the challenges faced by British Muslims with palliative care needs during the COVID-19 pandemic.

Background: Inequities in palliative and end-of-life care access exist, with evidence of lower uptake of these services among people from the British Muslim community. Little research exists exploring the experiences of British Muslims with palliative care needs and their families during the pandemic or before.

Aim: To coproduce peer research exploring the experiences of British Muslims with palliative care needs and their families during the COVID-19 pandemic.

Characterising trends in the initiation, timing, and completion of recommended summary plan for emergency care and treatment (ReSPECT) plans: Retrospective analysis of routine data from a large UK hospital trust.

Aim: To assess patient socio-demographic and disease characteristics associated with the initiation, timing, and completion of emergency care and treatment planning in a large UK-based hospital trust.

Methods: Secondary retrospective analysis of data across 32 months extracted from digitally stored Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) plans within the electronic health record system of an acute hospital trust in England, UK.

Results: Data analysed from ReSPECT plans (n = 23,729), indicate an increase in the proportion of admissions having a plan created from 4.

Experiences of pain and pain management in advanced disease and serious illness for people from South Asian communities in Leeds and Bradford: a qualitative interview study.

Background: Pain is a significant problem for many people with advanced disease or a serious illness. Culture and ethnicity can affect the experience and management of pain. However, there is limited research in South Asian communities in the UK on their experiences of pain.

How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review.

Background: Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals' care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this.

Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study.

Background: The provision of palliative care is increasing, with many people dying in community-based settings. It is essential that communication is effective if and when patients transition from hospice to community palliative care. Past research has indicated that communication issues are prevalent during hospital discharges, but little is known about hospice discharges.

Palin parent-child interaction therapy with children with autism spectrum disorder and stuttering.

Introduction: It is estimated that 8% of children who stutter (CWS) have autism spectrum disorder (ASD) Briley & Ellis (2018). There is evidence that interventions for CWS and interventions for children with ASD can be effective, but there is little evidence to guide clinical decision making when working with CWS with a co-existing diagnosis of ASD. Palin Parent-Child Interaction (PCI) therapy Kelman & Nicholas (2020) is an evidence-based intervention for CWS, with the authors suggesting that the approach may be beneficial for CWS with ASD.

Collection of cancer Patient Reported Outcome Measures (PROMS) to link with primary and secondary electronic care records to understand and improve long term cancer outcomes: A protocol paper.

Introduction: More people are living with and beyond a cancer diagnosis. There is limited understanding of the long-term effects of cancer and cancer treatment on quality of life and personal and household finances when compared to people without cancer. In a separate protocol we have proposed to link de-identified data from electronic primary care and hospital records for a large population of cancer survivors and matched controls.

Does ethnicity affect pain management for people with advanced disease? A mixed methods cross-national systematic review of 'very high' Human Development Index English-speaking countries.

Background: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups.

Bereavement care for ethnic minority communities: A systematic review of access to, models of, outcomes from, and satisfaction with, service provision.

Objectives: To review and synthesize the existing evidence on bereavement care, within the United Kingdom (UK), for ethnic minority communities in terms of barriers and facilitators to access; models of care; outcomes from, and satisfaction with, service provision.

Design: A systematic review adopting a framework synthesis approach was conducted. An electronic search of the literature was undertaken in MEDLINE, Embase, PsycINFO, Social Work Abstract and CINAHL via EBSCO, Global Health, Cochrane library, the Trip database and ProQuest between 1995 and 2020.

Comparative effects of viral-transport-medium heat inactivation upon downstream SARS-CoV-2 detection in patient samples.

The COVID-19 pandemic, which began in 2020 is testing economic resilience and surge capacity of healthcare providers worldwide. At the time of writing, positive detection of the SARS-CoV-2 virus remains the only method for diagnosing COVID-19 infection. Rapid upscaling of national SARS-CoV-2 genome testing presented challenges: (1) Unpredictable supply chains of reagents and kits for virus inactivation, RNA extraction and PCR-detection of viral genomes.

What is the impact of clinically assisted hydration in the last days of life? A systematic literature review and narrative synthesis.

Background: Clinically assisted hydration (CAH) can be provided in the last days of life as drinking declines. The impact of this practice on quality of life or survival in the last days of life is unclear. Practice varies worldwide concerning this emotive issue.

Planning for an uncertain future in progressive neurological disease: a qualitative study of patient and family decision-making with a focus on eating and drinking.

Background: Dysphagia and other eating and drinking difficulties are common in progressive neurological diseases. Mealtimes can become a major source of difficulty and anxiety for patients and their families. Decisions about eating, drinking and care can become challenging as disease progresses, and the person in question loses the capacity to participate in decisions about their own care.

The difficulties of discharging hospice patients to care homes at the end of life: A focus group study.

Background: Discharge from inpatient palliative care units to long-term care can be challenging. In the United Kingdom, hospice inpatients move to a care home if they no longer require specialist palliative care and cannot be discharged home. There is evidence to suggest that patients and families find the prospect of such a move distressing.

Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States.

Background: There is continuing public debate about treatment preferences at the end of life, and the acceptability and legal status of treatments that sustain or end life. However, most surveys use binary yes/no measures, and little is known about preferences in neurological disease when decision-making capacity is lost, as most studies focus on cancer. This study investigates changes in public preferences for care towards the end of life, with a focus on measures to sustain or end life.

Eating and drinking interventions for people at risk of lacking decision-making capacity: who decides and how?

Background: Some people with progressive neurological diseases find they need additional support with eating and drinking at mealtimes, and may require artificial nutrition and hydration. Decisions concerning artificial nutrition and hydration at the end of life are ethically complex, particularly if the individual lacks decision-making capacity. Decisions may concern issues of life and death: weighing the potential for increasing morbidity and prolonging suffering, with potentially shortening life.

Should they have a percutaneous endoscopic gastrostomy? the importance of assessing decision-making capacity and the central role of a multidisciplinary team.

Decisions about percutaneous endoscopic gastrostomy (PEG) can be clinically and ethically challenging, particularly when patients lack decision-making capacity. As the age of the UK population rises, with the associated increase in prevalence of dementias and neurodegenerative diseases, it is becoming an increasingly important issue for clinicians. The recent review and subsequent withdrawal of the Liverpool Care Pathway highlighted feeding as a particular area of concern.

How are treatment decisions made about artificial nutrition for individuals at risk of lacking capacity? A systematic literature review.

Background: Worldwide, the number of individuals lacking the mental capacity to participate in decisions about their own healthcare is increasing. Due to the ageing global population and advancing medical treatments, there are now many more people living longer with neurological disorders, such as dementia, acquired brain injuries, and intellectual disabilities. Many of these individuals have feeding difficulties and may require artificial nutrition.