Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

'Sadly I think we are sort of still quite white, middle-class really' - Inequities in access to bereavement support: Findings from a mixed methods study.

BACKGROUND: Voluntary and community sector bereavement services are central to bereavement support in the UK. AIM: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. DESIGN: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. SETTINGS/PARTICIPANTS: 147 services participated in the survey; 24 interviews were conducted across 14 services. RESULTS: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. CONCLUSIONS: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.

GC-MS Techniques Investigating Potential Biomarkers of Dying in the Last Weeks with Lung Cancer.

Predicting when a patient with advanced cancer is dying is a challenge and currently no prognostic test is available. We hypothesised that a dying process from cancer is associated with metabolic changes and specifically with changes in volatile organic compounds (VOCs). We analysed urine from patients with lung cancer in the last weeks of life by headspace gas chromatography mass spectrometry. Urine was acidified or alkalinised before analysis. VOC changes in the last weeks of life were identified using univariate, multivariate and linear regression analysis; 12 VOCs increased (11 from the acid dataset, 2 from the alkali dataset) and 25 VOCs decreased (23 from the acid dataset and 3 from the alkali dataset). A Cox Lasso prediction model using 8 VOCs predicted dying with an AUC of 0.77, 0.78 and 0.85 at 30, 20 and 10 days and stratified patients into a low (median 10 days), medium (median 50 days) or high risk of survival. Our data supports the hypothesis there are specific metabolic changes associated with the dying. The VOCs identified are potential biomarkers of dying in lung cancer and could be used as a tool to provide additional prognostic information to inform expert clinician judgement and subsequent decision making.

What do bereaved relatives of cancer patients dying in hospital want to tell us? Analysis of free-text comments from the International Care of the Dying Evaluation (i-CODE) survey: a mixed methods approach.

PURPOSE: We conducted an international survey of bereaved relatives of cancer patients dying in hospitals in seven countries, with the aim to assess and improve the quality of care. The survey used the i-CODE (International Care of the Dying Evaluation) questionnaire. Here, we report findings from the free-text comments submitted with the questionnaires. We explored for topic areas which would potentially be important for improving the quality of care. Further, we examined who reported free-texts and in what way, to reduce bias without ignoring the function the free-texts may have for those contributing. METHODS: We used a combined qualitative-quantitative approach: logistic regression analysis to study the effect of respondents' socio-demographic characteristics on the probability of free-texts contributions and thematic analysis to understand the free-text meaning. The primary survey outcomes, (1) how frequently the dying person was treated with dignity and respect and (2) support for the relative, were related to free-text content. RESULTS: In total, 914 questionnaires were submitted; 457/914 (50%) contained free-text comments. We found no socio-demographic differences between the respondents providing free-texts and those who did not. We discovered different types of free-texts ("feedback," "narrative," "self-revelation") containing themes of which "continuity of care," "the one person who can make a difference," and "the importance of being a companion to the dying" represent care dimensions supplementing the questionnaire items. A free-text type of grateful feedback was associated with well perceived support for the relative. CONCLUSION: Bereaved relatives used the free-texts to report details related to i-CODE items and to dimensions otherwise not represented. They highlighted the importance of the perceived support from human interaction between staff and the dying patient and themselves; and that more than professional competence alone, personal, meaningful interactions have profound importance.

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

BACKGROUND: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. AIM: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. DESIGN: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. SETTING/PARTICIPANTS: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. RESULTS: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. CONCLUSION: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.

Factors Associated With Higher Levels of Grief and Support Needs Among People Bereaved During the Pandemic: Results from a National Online Survey.

We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36), and practical and emotional support needs in 13 domains. Participants' mean age was 49.5 (SD 12.9); 628 (88.6%) female. Mean age of deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. High overall levels of grief and support needs were observed; 28.2% exhibited severe vulnerability (index of vulnerability ≥24). Grief and support needs were higher for close relationships with the deceased (vs. more distant) and reported social isolation and loneliness (p < 0.001), and lower when age of deceased was above 40-50. Other associated factors were place of death and health professional support post-death (p < 0.05).

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic.

BACKGROUND: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. AIM: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

The palliative care needs and experiences of people with advanced head and neck cancer: A scoping review.

BACKGROUND: The palliative care needs of people with advanced head and neck cancer pose unique complexities due to the impact the illness has on eating, speaking, appearance and breathing. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify and map out the palliative care needs and experiences for people with advanced head and neck cancer. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken in MEDLINE (Ovid), EMBASE and CINAHL covering the years January 1996 to January 2019. RESULTS: People with advanced head and neck cancer often had palliative care needs but there was variability in the timing and access to relevant services. A high prevalence of interventions, for example hospital admissions were needed even during the last month of life. This was not necessarily negated with early engagement of palliative care. Dissonance between patients and family carers about information needs and decision-making was an additional complexity. Studies tended to be descriptive in nature, and often involved a single centre. CONCLUSION: This scoping review demonstrates the complexity of care for people with advanced head and neck cancer and the issues related to the current healthcare systems. Focus on appropriate referral criteria, increased integration and coordination of care and robust evaluation of specific care components seems key. Linkage between research and service design delivery across teams, disciplines and care settings seems pertinent.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

Disease trajectories, place and mode of death in people with head and neck cancer: Findings from the 'Head and Neck 5000' population-based prospective clinical cohort study.

BACKGROUND: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services. AIM: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis. DESIGN: Prospective cohort study. PARTICIPANTS: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014. RESULTS: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with 'non-curative' and 'curative' intent, respectively. Within 12 months, 109/161 (68%) in the 'non-curative' group died compared with 482/5241 (9%) in the 'curative' group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in 'non-curative' and 'curative' groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% 'non-curative'; 23.5% 'curative') and 45.7% of the 'curative' group died in hospital. CONCLUSION: In addition to those with incurable head and neck cancer, there is a small but significant 'curative' subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments. METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation. RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation. CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.

The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

OBJECTIVE: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. METHOD: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. RESULTS: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. SIGNIFICANCE OF RESULTS: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

BACKGROUND: Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail older people, those with non-malignant disease, and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. AIM: To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on health care, if any, from a patient perspective. DESIGN AND SETTING: A qualitative interview study undertaken with patients and family carers in a major UK city. METHOD: Semi-structured interviews were carried out with patients (and/or family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. RESULTS: Eleven participants were recruited: eight patients and three family carers. The following three interrelated themes were identified: 1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs; 2) a compassionate, timely approach is required for identification of palliative care needs, with or without an identification tool; and 3) identification of palliative care needs is beneficial where it leads to proactive holistic care. CONCLUSION: A compassionate approach, sharing of prognostic uncertainty, and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.

The mental health and well-being implications of a mesothelioma diagnosis: A mixed methods study.

PURPOSE: Mesothelioma is an incurable, asbestos-related cancer with a poor prognosis. There is scant evidence about the mental health and well-being impacts on patients and carers living with the illness. This study aimed to investigate mesothelioma's impact on mental health and well-being and the scale of mental health conditions in patients and informal carers. METHODS: A mixed-methods design was used: a cross-sectional survey of mesothelioma patients and informal carers plus semi-structured interviews with patients and carers. The survey used validated scales collecting data on mental health aspects of mesothelioma: the EQ5D to assess health-related quality-of-life; the Hospital Anxiety and Depression scale; the PCL-5 to assess Posttraumatic Stress; and the Posttraumatic Growth Inventory. The datasets were integrated during analysis. RESULTS: 96 useable survey responses were received. A clinical level of depression was reported by 29 participants (30.21%), of anxiety by 48 (50%), of posttraumatic distress disorder by 32 (33.33%), and of posttraumatic growth by 34 (35.42%). Carers had worse scores than patients. Three main themes were developed from interviews with 10 patients and 11 carers: 'Prognosis', 'Support from services', and 'Social connections and communication'. CONCLUSIONS: Healthcare professionals delivering a mesothelioma diagnosis require regular training in communication skills plus updating in current treatment options, so they provide an appropriate mix of realism and hope. Better signposting to mental health support is needed for patients and carers. Our introduction of posttraumatic growth into the mesothelioma literature is novel. We recommend specialist nurses are trained to recognise, understand, and foster posttraumatic growth.

Exploration of pain assessment and management processes in oncology outpatient services with healthcare professionals: a qualitative study.

OBJECTIVES: This study explored cancer pain management practices and clinical care pathways used by healthcare professionals (HCPs) to understand the barriers and facilitators for standardised pain management in oncology outpatient services (OS). DESIGN: Data were collected using semistructured interviews that were audio-recorded and transcribed. The data were analysed using thematic analysis. SETTING: Three NHS trusts with oncology OS in Northern England. PARTICIPANTS: Twenty HCPs with varied roles (eg, oncologist and nurse) and experiences (eg, registrar and consultant) from different cancer site clinics (eg, breast and lung). Data were analysed using thematic analysis. RESULTS: HCPs discussed cancer pain management practices during consultation and supporting continuity of care beyond consultation. Key findings included : (1) HCPs' level of clinical experience influenced pain assessments; (2) remote consulting impeded experienced HCPs to do detailed pain assessments; (3) diffusion of HCP responsibility to manage cancer pain; (4) nurses facilitated pain management support with patients and (5) continuity of care for pain management was constrained by the integration of multidisciplinary teams. CONCLUSIONS: These data demonstrate HCP cancer pain management practices varied and were unstructured. Recommendations are made for a standardised cancer pain management intervention: (1) detailed evaluation of pain with a tailored self-management strategy; (2) implementation of a structured pain assessment that supports remote consultations, (3) pain assessment tool that can support both experienced and less experienced clinicians. These findings will inform the development of a cancer pain management tool to integrate within routine oncology OS.

Lung cancer and rehabilitation--what are the barriers? Results of a questionnaire survey and the development of regional lung cancer rehabilitation standards and guidelines.

BACKGROUND: Evidence supports the role of rehabilitation in the management of lung cancer symptoms. Previous research reports that rehabilitation needs are inadequately recognised and managed, which may adversely affect patients' quality-of-life and create burden for caregivers. AIMS: This study aims to explore the perceptions of palliative care and respiratory multidisciplinary team (MDT) members about the role of rehabilitation for lung cancer patients, examine patterns of referral for lung cancer patients to rehabilitation services, and highlight the barriers which prevent the referral of lung cancer patients to rehabilitation services. METHODS: Questionnaires were completed by MDT members within a regional cancer network during June 2010. RESULTS: Fifty-nine healthcare professionals participated. Ninety-four per cent of respondents perceived their patients had rehabilitation needs. Referral most commonly occurred during the palliative (29.6 %) and post-treatment (23.7 %) disease phases. Barriers to referral included "lack of knowledge of services or referral mechanisms" (28.8 %), "waiting lists" (28.8 %) and the perception that patients "do not desire rehabilitation" (22 %). Rehabilitation needs were most frequently discussed at palliative in-patient MDT meetings [reported as "often" by 37 (62.7 %) respondents] and least discussed at lung MDTs (half of respondents reporting that rehabilitation was "never" discussed). Rehabilitation services were considered adequate by 39 % of respondents. CONCLUSIONS: Long waiting times and lack of knowledge of services are among several factors that may prevent lung cancer patients being offered rehabilitation. In order to improve the quality of care delivered to cancer patients, it is important to remove barriers that affect delivery of rehabilitation services.

Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives.

BACKGROUND: Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. AIM: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. DESIGN: The instrument, 'Evaluating Care and Health Outcomes - for the Dying' (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test-retest reliability assessment with bereaved relatives (n = 80) SETTING: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. RESULTS: The systematic and robust process of questionnaire development generated evidence for ECHO-D's face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test-retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. CONCLUSIONS: ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.

Validation of 'Care Of the Dying Evaluation' (CODETM) within an international study exploring bereaved relatives' perceptions about quality of care in the last days of life.

CONTEXT: Assessing quality of care provided during the dying phase using validated tools aids quality assurance and recognizes unmet need. OBJECTIVE: To assess construct validity and internal consistency of 'Care Of the Dying Evaluation' (CODETM) within an international context. METHODS: Post-bereavement survey (August 2017 to September 2018) using CODETM. Respondents were next-of-kin to adult patients (≥ 18 years old) with cancer who had an 'expected' death within 22 study site hospitals in 7 countries: Argentina, Brazil, Germany, Norway, Poland, United Kingdom, Uruguay. Exploratory and Confirmatory Factor Analysis (EFA and CFA) were conducted, and internal reliability was assessed using Cronbach alpha (α). Known group validity was assessed by ability to discriminate quality of care based in place (Palliative Care Units (PCUs)) and country (Poland, where most deaths were in PCUs) of care. Differences were quantified using effect sizes (ES). RESULTS: A 914 CODETM questionnaires completed (54% response rate). 527 (58%) male deceased patients; 610 (67%) next-of-kin female who were most commonly the 'spouse/partner' (411, 45%). EFA identified 4 factors: 'Overall care,' 'Communication and support,' 'Trust, respect and dignity,' and 'Symptom management' with good reliability scores (α = 0.628 - 0.862). CFA confirmed the 4-factor model; these were highly correlated and a bifactor model showed acceptable fit. The ES for quality of care in PCU's was 0.727; ES for Poland was 0.657, supporting the sensitivity of CODETM to detect differences. CONCLUSION: Within an international context, good evidence supports the validity and reliability of CODETM for assessing the quality of care provided in the last days of life.