A multicentre prospective evaluation of health-related quality of life and patient related outcomes in pancreatic and peripancreatic cancer: PROMCAN study.

BACKGROUND: The temporal evolution of HRQoL and the importance of other PROs to patients, following resection for pancreatic and peripancreatic malignancy remains unexplored. METHODS: Patients undergoing pancreatic resection between 2021 and 2022 were enrolled from 2 UK HPB centres. Patients completed the EORTC QLQ-C30, QLQ-PAN26 tools and rated 56 PROs preoperatively (T1), at discharge (T2), 6-weeks (T3), 3-months (T4) and 6-months (T5) postoperatively. ANOVA followed by post-hoc analysis was used to examine patterns in HRQoL through time. Multivariable ANOVA was used to identify impact of clinical factors on HRQoL. RESULTS: 63 patients were recruited [median age, 72 (IQR 41-85); 39/63 male]. Physical functioning declined from 70.4 (26.2) at T1 to 53.5 (20.9) at T2 (p = 0.016). Global QoL score increased significantly from 41.0 (23.0) at T2 to 60.0 (26.1) at T5 (p = 0.007), as did role functioning [21.1 (27.9) at T2 to 59.4 (32.8) at T5, p < 0.001]. Chemotherapy status and the postoperative complications did not significantly change HRQoL. General QoL and health were the only PROs rated as 'very important' (scores 7-9) by more than 80 % of participants at five time-points. CONCLUSION: Recuperation of HRQoL measures is seen at 6-months postoperative and was not affected by chemotherapy or postoperative complications. Notably, PROs important to patients varied over time.

Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol.

INTRODUCTION: Approximately 10 300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research suggests that patients have many ongoing needs for support and care, but that these needs are not met by existing services. Family members often step in to fill this gap and provide support and care during and after treatment. Research in other cancers shows that this informal caregiving can place a very heavy burden on carers. However, there are few studies in the international literature that have focused on informal carers in pancreatic cancer; none have been conducted in the UK. METHODS AND ANALYSIS: Two complementary research methods will be utilised. First, a longitudinal quantitative study of 300 carers investigating, using validated questionnaires to assess the impact of caregiving (Caregiver Reaction Assessment), the unmet needs of carers (Supportive Care Needs Survey) and the quality-of-life (Short Form 12-item health survey), will be conducted. Second, qualitative interviews will be conducted with up to 30 carers to explore their experiences in more depth. Mixed-effects regression models will be applied to survey results to determine how impact, needs and quality-of-life vary over time, compare outcomes between carers of patients with operable and inoperable disease and identify social factors which affect outcomes. Interview data will undergo reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has been approved by the Health Research Authority of the UK (Ethical approval IRAS ID 309503). Findings will be published in peer-reviewed journals and presented at national and international conferences.

How do patients make decisions in the context of a multidisciplinary team: an ethnographic study of four head and neck cancer centres in the north of England.

OBJECTIVES: To describe how patients are engaged with cancer decisions in the context of multidisciplinary team (MDT) and how MDT recommendations are operationalised in the context of a shared decision. DESIGN: Ethnographic qualitative study. SETTING: Four head and neck cancer centres in the north of England. PARTICIPANTS: Patients with a diagnosis of new or recurrent head and neck cancer; non-participant observation of 35 MDT meetings and 37 MDT clinics, informal interviews, and formal, semistructured interviews with 20 patients and 9 MDT staff members. METHODS: Ethnographic methods including non-participant observation of MDT meetings and clinic appointments, informal interviews, field notes and formal semistructured interviews with patients and MDT members. RESULTS: MDT discussions often conclude with a firm recommendation for treatment. When delivered to a patient in clinic, this recommendation is often accepted by the patient, but this response may result from the disempowered position in which they find themselves. While patient behaviour may thus appear to endorse clinicians' views that a paternalistic approach is desired by patients (creating a 'cycle of paternalism'), the rigidity of the MDT treatment recommendation can act as a barrier to discussion of options and the exploration of patient values. CONCLUSIONS: The current model of MDT decision-making does not support shared decision-making and may actively undermine it. A model should be developed whereby the individual patient perspective has more input into MDT discussions, and where decisions are made on potential treatment options rather than providing a single recommendation for discussion with the patient. Deeper consideration should be given to how the MDT incorporates the patient perspective and/or delivers its discussion of options to the patient. In order to achieve these objectives, a new model of MDT working is required.

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers.

BACKGROUND: Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations. AIM: To establish patients' and carers' views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care. DESIGN: Meta-ethnography of qualitative evidence. The review protocol was prospectively registered with PROSPERO (CRD42021243179). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, CINAHL, Scopus and Web of Science) from 1st January 1996 to 31st March 2022. Studies were included that used qualitative methodology and included patients' or carers' perspectives on living with end-stage disease or palliative care. Quality was assessed using the Critical Appraisal Skills Programme checklist. RESULTS: About 1779 articles were identified by initial searches. Twelve met the inclusion criteria, providing evidence from 266 individuals across five countries. Three stages were identified in the illness journey of a person with interstitial lung disease: (1) Information seeking, (2) Grief and adjustment, (3) Fear of the future. Palliative care involvement was believed to be most appropriate in the latter two stages and should be prompted by changes in patients' health such as respiratory infections, onset of new symptoms, hospital admission, decline in physical function and initiation of oxygen. CONCLUSIONS: Patients and carers prefer referral to palliative care services to be prompted by changes in health status. Future research should focus on supporting timely recognition of changes in patients' health status and how to respond in a community setting.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.

BACKGROUND: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. AIM: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. DESIGN: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. RESULTS: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. CONCLUSIONS: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences. DESIGN: Qualitative study using interviews and focus groups. SETTING: Health and Social Care Services in the North of England. PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members. RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system. CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders.

BACKGROUND: People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention. METHODS: The views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups. RESULTS: Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death. CONCLUSIONS: This unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.

End-of-life care: A qualitative study comparing the views of people with dementia and family carers.

BACKGROUND: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers. AIM: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care. DESIGN: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed. SETTING/PARTICIPANTS: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England. FINDINGS: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making. CONCLUSION: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice.

BACKGROUND: Evidence consistently shows that people with advanced dementia experience suboptimal end of life care compared to those with cancer; with increased hospitalisation, inadequate pain control and fewer palliative care interventions. Understanding the views of those service managers and frontline staff who organise and provide care is crucial in order to develop better end of life care for people with dementia. METHODS AND FINDINGS: Qualitative interviews and focus groups were conducted from 2013 to 2015 with 33 service managers and 54 staff involved in frontline care, including doctors, nurses, nursing and care home managers, service development leads, senior managers/directors, care assistants and senior care assistants/team leads. All were audio recorded and transcribed verbatim. Participants represented a diverse range of service types and occupation. Transcripts were subject to coding and thematic analysis in data meetings. Analysis of the data led to the development of seven key themes: Recognising end of life (EOL) and tools to support end of life care (EOLC), Communicating with families about EOL, Collaborative working, Continuity of care, Ensuring comfort at EOL, Supporting families, Developing and supporting staff. Each is discussed in detail and comprise individual and collective views on approaches to good end of life care for people with dementia. CONCLUSIONS: The significant challenges of providing good end of life care for people with dementia requires that different forms of expertise should be recognised and used; including the skills and knowledge of care assistants. Successfully engaging with people with dementia and family members and helping them to recognise the dying trajectory requires a supportive integration of emotional and technical expertise. The study strengthens the existing evidence base in this area and will be used with a related set of studies (on the views of other stakeholders and observations and interviews conducted in four services) to develop an evidence-based intervention.

Expert views on the factors enabling good end of life care for people with dementia: a qualitative study.

BACKGROUND: Dementia, of all long term illnesses, accounts for the greatest chronic disease burden, and the number of people with age-related diseases like dementia is predicted to double by 2040. People with advanced dementia experience similar symptoms to those dying with cancer yet professional carers find prognostication difficult and struggle to meet palliative care needs, with physical symptoms undetected and untreated. While elements of good practice in this area have been identified in theory, the factors which enable such good practice to be implemented in real world practice need to be better understood. The aim of this study was to determine expert views on the key factors influencing good practice in end of life care for people with dementia. METHODS: Semi-structured telephone and face-to-face interviews with topic guide, verbatim transcription and thematic analysis. Interviews were conducted with experts in dementia care and/or palliative care in England (n = 30). RESULTS: Four key factors influencing good practice in end of life care for people with dementia were identified from the expert interviews: leadership and management of care, integrating clinical expertise, continuity of care, and use of guidelines. CONCLUSIONS: The relationships between the four key factors are important. Leadership and management of care have implications for the successful implementation of guidelines, while the appropriate and timely use of clinical expertise could prevent hospitalisation and ensure continuity of care. A lack of integration across health and social care can undermine continuity of care. Further work is needed to understand how existing guidelines and tools contribute to good practice. DISCLAIMER: This article presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research programme (Grant Reference Number RP-PG-0611-20005). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

A qualitative study: professionals' experiences of advance care planning in dementia and palliative care, 'a good idea in theory but ...'.

BACKGROUND: Advance care planning comprises discussions about an individual's wishes for future care while they have capacity. AIM: To explore professionals' experiences on the implementation of advance care planning in two areas of clinical care, dementia and palliative care. DESIGN: Qualitative study, focus groups and individual interviews. SETTING: North East of England. SAMPLE: Ninety-five participants from one Primary Care Trust, two acute National Health Service Hospital Trusts, one Ambulance Trust, one Local Authority and voluntary organisations and the legal sector. RESULTS: Fourteen focus groups and 18 interviews were held with 95 participants. While professionals agreed that advance care planning was a good idea in theory, implementation in practice presented them with significant challenges. The majority expressed uncertainty over the general value of advance care planning, whether current service provision could meet patient wishes, their individual roles and responsibilities and which aspects of advance care planning were legally binding; the array of different advance care planning forms and documentation available added to the confusion. In dementia care, the timing of when to initiate advance care planning discussions was an added challenge. CONCLUSIONS: This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.

"Done more for me in a fortnight than anybody done in all me life." How welfare rights advice can help people with cancer.

BACKGROUND: In the UK many people with cancer and their carers do not have easy access to the welfare benefits to which they are entitled adding further strain to the process of dealing with cancer. It is estimated that nine out of ten cancer patients' households experience loss of income as a direct result of cancer, which, due to its socio-economic patterning disproportionately affects those most likely to be financially disadvantaged. In the UK proactive welfare rights advice services accessed via health care settings significantly increase benefit entitlement among people with health problems and this paper reports on a qualitative study examining the impact of a welfare rights advice service specifically designed for people affected by cancer and their carers in County Durham, North East England (UK). METHODS: Twenty two men and women with cancer or caring for someone with cancer who were recipients of welfare rights advice aged between 35 and 83 were recruited from a variety of health care and community settings. Semi-structured interviews were undertaken and analysed using the Framework method. RESULTS: Most of the participants experienced financial strain following their cancer diagnosis. Participants accessed the welfare rights service in a variety of ways, but mainly through referral by other professionals. The additional income generated by successful benefit claims was used in a number of ways and included offsetting additional costs associated with cancer and lessening the impact of loss of earnings. Overall, receiving welfare rights advice eased feelings of stress over financial issues at a time when participants were concerned about dealing with the impact of cancer. Lack of knowledge about benefit entitlements was the main barrier to accessing benefits, and this outweighed attitudinal factors such as stigma and concerns about benefit fraud. CONCLUSIONS: Financial strain resulting from a cancer diagnosis is compounded in the UK by lack of easy access to information about benefit entitlements and assistance to claim. Proactive welfare rights advice services, working closely with health and social care professionals can assist with the practical demands that arise from dealing with the illness and should be considered an important part of a holistic approach to cancer treatment.

A critical examination of home care: end of life care as an illustrative case.

Drawing on end of life care as an illustrative case, this paper critically examines the provision of care in the home, identifying a number of inherent tensions. For 60 years the hospital has been the preferred site of care. However, the UK caring division of labour is currently undergoing a process of (re)domestication and the provision of home care is increasingly regarded as a 'gold standard' for the organisation of care, in institutional and domestic contexts. In this paper we argue that while 'home care' policies serve a range of professional and political agendas, they contain unacknowledged contradictions and strains, creating challenges for both family and professional carers. The realities of home care are examined through reconceptualising qualitative data generated from three research projects concerned with dying in the community. We argue that, whilst previous work has highlighted the burdens the redomestication of care places upon carers, home care philosophies and policies have led to over-romanticised notions of care which privilege the value of caring relationships without acknowledging the dynamic interaction of such social relationships with the actual work of caring. Moreover, such policy trends have created a nexus of social expectations and obligations for which modern society is unprepared. With reference to both end of life care, and home care more widely, we argue that health care planners and professionals need to think more critically about the way care is delivered. Home is not merely about a physical space, but the social and emotional relationships therein. Good 'home care,' characterised by attention to patient-centred needs and flexible in design and scope, does not have to be located within the private sphere; relationships may actually be maintained and nurtured by enabling people to have a realistic choice of care in an institution.

Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care.

BACKGROUND: Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home. METHODS: A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed. RESULTS: In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR=3.27; 95% CI=1.19-8.95) or an acute hospital (RR=2.85; 95% CI=1.33-6.09) when they were referred. The median length of service use was 4 days. CONCLUSIONS: The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.

Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals.

Primary care plays an important role in delivering care to people who are dying. However, providing palliative care to people dying with conditions other than cancer may be more problematic, because it may be more difficult to establish an exact prognosis or to identify their needs. This article draws on qualitative research, which explored the views of health professionals, patients and their carers about care provided at the end of life. Differences between the care of people with cancer and those with end-stage cardiorespiratory disease were found in four main areas: management and progression of disease, communication and information, health care in the community and awareness of dying. The research shows that even in PHCTs (primary health care teams) committed to the delivery of palliative care, people dying with end-stage cardiorespiratory disease are less likely than those with cancer to receive full, and easily understood, information, to be aware that they are dying or to receive district nursing care. There is an increasing call for palliative care to be extended to all, but further work is needed to develop appropriate packages of care for those dying with conditions other than cancer.

Care of people dying with malignant and cardiorespiratory disease in general practice.

BACKGROUND: Provision of palliative care for people dying with malignant disease is a well-characterised aspect of general practice workload. The nature of end-of-life care of people with non-malignant disease is less well described. AIM: To compare the general practice care provided in the last year of life to people who died with malignant and with cardiorespiratory disease. DESIGN: Case record review. SETTING: Two Leicestershire general practices: one inner-city, one semi-rural; total practice population 26,000 people. METHOD: General practice review of the records of all people registered with the practices who died with malignant or cardiorespiratory disease between 1 August 2000 and 31 July 2002 to determine: cause and place of death, recorded comorbidity, palliative medication prescribed, number of consultations and continuity of care, receipt and duration of palliative care. RESULTS: When compared with people who died with cardiorespiratory disease, those who died with malignant disease were more likely to have had a terminal phase of their illness identified and to have been prescribed more palliative drugs. Both groups consulted a similar number of times, experienced similar continuity of care, had similar comorbidity, and were equally likely to die at home. CONCLUSION: People who died with cardiorespiratory disease were less likely to be in receipt of formally identified terminal care and were likely to have had fewer drugs prescribed for palliation than people with malignant disease, yet they make similar demands of practices. They are likely to have unmet needs with respect to palliation of symptoms.