Developing a disease-specific patient reported outcome measure to enhance understanding of the lived experiences of ANCA associated vasculitis: A protocol paper.

Anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV) is a chronic, relapsing-remitting condition associated with increased morbidity. Previous research has shown patients with AAV report high levels of fatigue, pain, depression and anxiety. Over recent years successful work has been carried out to improve clinical outcomes, resulting in reduced mortality and end stage kidney disease (ESKD). Despite this, little work has been done to better understand the role of the patient within this condition. The prevalence of AAV is increasing and to date, there is a shortage of specific tools that assess and measure key features relating to patient reported outcomes (PROs). This protocol details how we can better understand the lived experiences of those with AAV through the development of a disease specific, patient reported outcome measure (PROM), to be used in clinic practice. This will allow us to recognise and validate PROs and the impact the disease and its treatment has on patients' health related quality of life (HRQoL). In addition, we aim to identify potential differences in PRO's between demographics, organ involvement and treatment subgroups in AAV as well as outcomes relating to the patient experience. Patients from a single centre in the UK will be recruited to take part in the exploratory qualitative study which will include focus groups and semi-structured interviews. The inclusion criteria comprise anyone with a diagnosis of AAV and willing to participate, including those who have active or relapsing disease, those are economically active, unemployed, retired and patients receiving renal replacement therapy. The aim of the project is to identify key issues patients experience in relation to their disease and its management and how these can be better assessed in a new PROM developed for use in the clinic setting. This will enable better delivery of individualised care and inform shared decision making, while also serving as a platform for future research looking at PROs in other glomerulonephritides.

A systematic review of patient reported outcome measures in patients with anti-neutrophil cytoplasmic antibody associated vasculitis.

OBJECTIVES: ANCA associated vasculitis (AAV) is associated with significant morbidity, fatigue, pain and poor health-related quality of life (HRQoL). This review aims to assess the comprehensiveness of existing patient reported outcome measures (PROMs) used in AAV and identify associations with poorer HRQoL outcomes. METHODS: A literature review of studies using PROMs, including those labelled HRQoL in people with AAV as a primary or secondary study outcome were screened and reviewed up to July 2023. Quality was assessed using the Critical Appraisal Skills Programme. RESULTS: A total of 30 articles were included which utilised 22 different PROM tools. 76.7% (n = 23) used the SF-36 or a variation as a generic measure of health status and or HRQoL. Two studies developed a disease specific PROM. The AAV-PRO showed good psychometric properties but potential limitations in capturing all relevant aspects of the disease experience for AAV patients. Factors associated with poorer HRQoL included: neurological and sinonasal involvement, women and younger patients. 86.6% of studies showed no meaningful relationships between the SF-36 and BVAS, VDI or disease duration. Depression and anxiety were common and socioeconomic factors such as unemployment were significantly associated with poorer mental health outcomes. Glucocorticoids were found to be independently associated with worse SF-36 scores. CONCLUSION: Generic PROMs are useful in measuring significant changes but lack sensitivity to specific symptoms and unique AAV-related issues, while existing disease specific PROMs have limitations and may not fully capture AAV patient's perspective on disease and treatment burden.

What factors are associated with informal carers' psychological morbidity during end-of-life home care? A systematic review and thematic synthesis of observational quantitative studies.

Background: Family carers are central in supporting patients nearing end of life. As a consequence, they often suffer detrimental impacts on their own mental health. Understanding what factors may affect carers' mental health is important in developing strategies to maintain their psychological well-being during caregiving. Aim: To conduct a systematic review and thematic evidence synthesis of factors related to carers' mental health during end-of-life caregiving. Method: Searches of MEDLINE, CINAHL, PsychINFO, Social Sciences Citation Index, EMBASE, Cochrane Central Register of Controlled Trials and Database of Abstracts of Reviews of Effects 1 January 2009-24 November 2019. We included observational quantitative studies focusing on adult informal/family carers for adult patients at end of life cared for at home considering any factor related to carer mental health (anxiety, depression, distress and quality of life) pre-bereavement. Newcastle-Ottawa Quality Assessment Scale was used. Thematic analysis with box score presentation, and meta-analysis were done where data permitted. Results: Findings from 63 included studies underpinned seven emergent themes. Patient condition (31 studies): worse patient psychological symptoms and quality of life were generally associated with worse carer mental health. Patient depression was associated with higher depression in carers (standardised mean difference = 0.59, 95% confidence interval 0.32 to 0.87, I2 = 77%). Patients' other symptoms and functional impairment may relate to carer mental health, but findings were unclear. Impact of caring responsibilities (14 studies): impact on carers' lives, task difficulty and general burden had clear associations with worse carer mental health. Relationships (8 studies): family dynamics and the quality of the carer-patient relationship may be important for carer mental health and are worthy of further investigation. Finance (6 studies): insufficient resources may relate to carers' mental health and warrant further study. Carers' psychological processes (13 studies): self-efficacy and preparedness were related to better mental health. However, findings regarding coping strategies were mixed. Support (18 studies): informal support given by family and friends may relate to better carer mental health, but evidence on formal support is limited. Having unmet needs was related to worse mental health, while satisfaction with care was related to better mental health. Contextual factors (16 studies): older age was generally associated with better carer mental health and being female was associated with worse mental health. Limitations: Studies were mainly cross-sectional (56) rather than longitudinal (7) which raises questions about the likely causal direction of relationships. One-third of studies had samples < 100, so many had limited statistical power to identify existing relationships. Conclusions and future work: Future work must adopt a comprehensive approach to improving carers' mental health because factors relating to carer mental health cover a broad spectrum. The literature on this topic is diverse and difficult to summarise, and the field would benefit from a clearer direction of enquiry guided by explanatory models. Future research should (1) further investigate quality of relationships and finances; (2) better define factors under investigation; (3) establish, through quantitative causal analyses, why factors might relate to mental health; and (4) utilise longitudinal designs more to aid understanding of likely causal direction of associations. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme HSDR 18/01/01 and is published in full in Health and Social Care Delivery Research. See the NIHR Funding and Awards website for further award information.

Family carers are central in supporting patients nearing end of life. However, their own mental health may often suffer as a result. It is important to understand what makes carers' mental health better or worse, to support them appropriately and help them stay in good health. To synthesise what is known about what can affect carers' mental health during end-of-life caregiving. We identified research literature (1 January 2009­24 November 2019) that looked at factors that may make carers' mental health better or worse when supporting someone nearing end of life. We focused on adult carers of adult patients cared for at home. Researchers worked with the help of a carer Review Advisory Panel to group similar factors into themes. This report presents research that used numerical measurements (for instance, surveys) to investigate factors related to carers' mental health. Findings from 63 studies were grouped into seven themes: (1) How the patient was: worse patient mental health and quality of life related to worse carer mental health. (2) How much caregiving affected carers' lives: greater impact, burden and feeling tasks were difficult related to worse mental health. (3) Relationships: good relationships between family members and between carer and patient seemed important for carer mental health. (4) Finance: having insufficient resources may affect carers' mental health. (5) Carers' internal processes (carers' thoughts and feelings): feeling confident and prepared for caregiving related to better mental health. (6) Support: carers' mental health seemed related to support given by family and friends and to getting sufficient, satisfactory support from formal services. (7) Background factors: older carers seemed generally to have better mental health, and female carers worse mental health overall. Factors that may affect carers' mental health are many and varied. We therefore need a broad strategy to help carers stay in good mental health during caregiving.

Involving carer advisors in evidence synthesis to improve carers' mental health during end-of-life home care: co-production during COVID-19 remote working.

Background: Family carers play a central role in supporting people at the end of life, but often suffer detrimental impacts on their own mental health as a result. This project conducted evidence synthesis of research into factors that may affect carers' mental health to help identify ways of maintaining their mental health. It worked closely with a carer Review Advisory Panel to help ensure the findings made sense and were communicated meaningfully from the carers' perspective. Aim: To present: (1) principles and components that facilitated successful patient and public involvement in an evidence synthesis project to help inform patient and public involvement in similar projects; (2) recommendations for carer support that were instigated and produced by the Review Advisory Panel. Process and principles: Nine Review Advisory Panel meetings including four to five carers, a lay Chair and three researchers were held. Solid 'groundwork' was invested in recruitment and relationship-building prior to meetings, and it was ensured that there was agreement of how to work together and clarification of expectations at the first meeting. Key meeting principles were: having a majority of carers, and a Chair with both carer and patient and public involvement experience, to ensure carer voices remained at the fore substantial researcher representation, including the project lead, to highlight the value placed on Review Advisory Panel meetings flexibility to follow carers' agendas, enabling 'space to talk' and 'space to change' appropriate and prompt carer payment, again emphasising patient and public involvement value to the project. Added general principles were: ongoing training, ample funded time for Review Advisory Panel preparation and ongoing communication outside meetings. COVID moved all meetings online after the first meeting, but the principles were maintained. Outputs: The project saw an evolution from patient and public involvement consultation to co-production. The main patient and public involvement output was recommendations for supporting carers based on project findings, instigated and produced by the Review Advisory Panel. Reflection on successful components and challenges: Five carers (including the Chair) and six researchers responded to questions by e-mail. Analysis by one researcher, aided by two other researchers, was then reviewed by all participants and revised. Both carers and researchers felt the components that made the patient and public involvement work were: (1) a shared sense of purpose of and gains from the Review Advisory Panel; (2) personal gains; (3) mutual commitment and respect; and (4) bridging between academic and lay perspectives, through investment in training, ensuring carers were able to meaningfully comment, and continuous negotiation and compromise. Challenges were that the COVID-induced move from face-to-face to online meetings reduced informality, flexibility, personal connection and non-verbal communication. However, earlier groundwork facilitated group resilience to these challenges. Patient and public involvement representation on the wider Research Management Group proved less successful, flagging the importance of negotiating and defining patient and public involvement roles at all project levels. Conclusion: The patient and public involvement principles employed, including meeting composition and chairing, and flexibility to follow carers' agendas, appeared to facilitate the evolution from consultation to co-production of carer recommendations, but require further testing. Preconditions for successful remote working should be further investigated, as the different advantages of face-to-face and virtual meetings may be combined through hybrid working. The iterative and responsive working required for genuine co-production may require more flexible patient and public involvement funding models. Study registration: This study is registered as PROSPERO registration 2019 CRD42019130279 at https://www.crd.york.ac.uk/prospero/. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (grant 18/01/01) and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Family carers are crucial in supporting people nearing the end of life, but their own mental health may often suffer as a consequence. This project summarised what is known about what makes carers' mental health better or worse. Researchers worked with a carer Review Advisory Panel to ensure that project findings were understandable and useful to carers. To report key findings on what made the teamwork between researchers and carers successful; to help improve teamwork in other projects; and to present carers' own recommendations on how to improve their mental health. Nine Review Advisory Panel meetings were held which included four to five carers, a lay Chair and three researchers. Important early preparation included getting to know each other and agreeing how to work together. Key meeting principles were: (1) bringing carer voices to the fore by having a majority of carers and an experienced carer as Chair; (2) highlighting the value placed on meetings by having several researchers attend, including the project lead; (3) flexibility to include carers' own agenda and project changes; and (4) appropriate and prompt carer payment. Meetings had to adapt to online working due to COVID-19. Carers moved from being advisors to taking more initiative and producing their own carer recommendations, which became a main project output. Written reflections by carers and researchers indicated that successful teamwork arose from a shared sense of purpose and gains, mutual commitment and respect, and bridging between researcher and carer perspectives through training, communication, negotiation and compromise. Early preparation helped the group adapt to the challenges of online working. Carer representation on other project committees could have been improved. Project principles enabled good researcher­carer teamwork and produced valuable carer recommendations, but need proper investment in time and resources. Online working can be successful, but needs good face-to-face preparation.

Understanding what affects psychological morbidity in informal carers when providing care at home for patients at the end of life: a systematic qualitative evidence synthesis.

Background: Informal carers are central in supporting patients at the end of life, but this has substantial negative impacts on carers' own mental health. When carers are unable to cope, this may affect their ability to support the patient and increase the likelihood of patient hospital admissions. Further, demographic changes mean demands for care at and before end of life are increasing and existing services will struggle to meet these demands. It is important to recognise carers as a vital resource and prevent adverse health outcomes from caregiving (and thereby limit their consequences). Large individual variation in the level of psychological morbidity from end-of-life caregiving suggests there is scope for interventions to improve carer mental health if we can understand the underlying factors. Objectives: This meta-synthesis of qualitative studies aims to identify factors reported by carers as important to their mental health. Data sources: Searches of MEDLINE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Social Science Citation Index, EMBASE, Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effects, and Cochrane Qualitative Reviews 1 January 2009 to 24 November 2019 for empirical publications from Organization for Economic Cooperation and Development countries in English/Scandinavian on factors affecting adult carer mental health during end-of-life caregiving in home settings. Review methods: Systematic qualitative meta-synthesis in collaboration with a Public Patient Involvement carer Review Advisory Panel, included thematic synthesis, followed by a best-fit framework synthesis, informed by principles of meta-ethnography. Critical Appraisal Skills Programme Qualitative Studies Checklist was used. Results: Thirty-three eligible studies identified six themes encompassing factors perceived by carers to affect their mental health during end-of-life caregiving. These were: (1) the patient condition (including patient decline); (2) impact of caring responsibilities (including exhaustion, lack of time for own needs, isolation); (3) relationships (including quality of the patient-carer relationship); (4) finances (including financial concerns, impact on work); (5) carers' internal processes (including loss of autonomy, lack of confidence, coping strategies); and (6) support (including lack of informal support, inadequacies in formal support information and care provision, limited collaboration, disjointed care). Reported strategies to improve mental health were linked to the final two themes, with suggestions on how to manage carers' internal processes and build appropriate support. Findings correspond with literature 1998-2008, indicating consistency in factors affecting carers and adding validity to findings. Limitations: The review was limited to caregiving in the home setting and studies from Organization for Economic Cooperation and Development countries published in English and Scandinavian. Identified papers predominantly considered carers of people with cancer, with little research into ethnic-minority perspectives. The review may therefore not fully encompass factors affecting carers of people with longer-term conditions, or those within other care settings, countries and population groups. Conclusions and future work: A wide range of both internal and contextual factors may lead to psychological morbidity when caring for someone at the end of life. Future work within practice therefore requires a broad-based rather than narrow approach to sustaining and improving carer mental health. Future work within research requires collaboration between researchers and stakeholders within policy, commissioning, practice and carer organisations to develop solutions and assess their effectiveness. Further, researchers need to develop better models for factors affecting carer mental health and their interaction, to build a stronger evidence base and better guide interventions. Study registration: This study is registered as PROSPERO CRD42019130279. Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number HSDR 18/01/01 and will be published in full in Health and Social Care Delivery Research. See the NIHR Journals Library website for further project information.

Being a carer for a family member or friend at the end of their life can have an impact on the carer's mental health. This includes depression, anxiety, stress and feeling overwhelmed. If carers feel unable to cope, they may be less able to look after their relative or friend. The mental health of carers must be a priority to help them feel better, cope, and support patients. This review summarises information from research into things that carers say are important for their mental health, to help us understand how we may be able to maintain or improve carers' mental health. We worked with six carers in a Review Advisory Panel to search for studies on carers' experience published between 1 January 2009 and 24 November 2019 and identify common themes from identified studies. Themes were put into a table of themes and subthemes, assessed by the carers, and compared with other literature to identify factors that caused carers to have poor mental health, and ways to help carers feel better. We found six themes that indicate how caring for those at the end of life can affect mental health. These include: the impact of the patient condition and seeing the patient decline; the impact of caring responsibilities; carers' relationship with the patient; finances; carers' feelings and experiences such as lack of control or confidence when caring; and support from other family, friends and health-care professionals. Strategies to improve mental health were linked to the final two themes, including how to manage carers' views and experiences of their situation and how to gain appropriate support. This study describes factors that lead to poor mental health and ways to improve mental health when caring for someone at the end of life. Further work is needed to use this information to inform policy and service delivery.

Factors associated with carer psychological and physical health during end-of-life caregiving: an observational analysis of a population-based post-bereavement survey of carers of people with cancer.

OBJECTIVE: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. DESIGN: National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. SETTING AND PARTICIPANTS: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). OUTCOME MEASURES: Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). METHODS: Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. RESULTS: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. CONCLUSIONS: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.

The monetary valuation of informal care to cancer decedents at end-of-life: Evidence from a national census survey.

BACKGROUND: Carers' end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. AIM: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. DESIGN AND SETTING: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in 'other' tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. RESULTS: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in 'other' tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. CONCLUSION: The monetary valuation we produce for carers' work is substantial, for example the weekly UK Carers' Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.

Enhancing the multi-dimensional assessment of quality of life: introducing the WHOQOL-Combi.

INTRODUCTION: We revisited the global concept of subjective quality of life (QoL) as assessed by the WHOQOL-BREF to investigate whether it could be elaborated into a conceptually more comprehensive instrument with good psychometric properties. Responding to a growing need for shorter QoL measures with broader social, spiritual and environmental contents, facets from WHOQOL international modules were examined for potential integration into the new WHOQOL-Combi. METHOD: Adults over 65 years, diagnosed with one or more chronic diseases (n = 2833), completed 41 WHOQOL items during the CLASSIC survey; each item represented a WHOQOL facet. This pool of specific QoL facets contained 24 from the WHOQOL-BREF (excluding general items), and 17 from recent international WHOQOL short-form modules, selected for their generic properties. Rasch modelling reduced the final item pool when assessing the WHOQOL-Combi's conceptual structure. Comparisons are made with the WHOQOL-BREF. RESULTS: Modelling confirmed the tenability of a 36-item solution scored as a five-domain profile, comprised of 24 WHOQOL-BREF facets and 12 new facets from modules. Social and psychological domains were strengthened by three facets, spiritual QoL by five, and physical QoL by one. The WHOQOL-Combi showed sound model fit, excellent internal consistency (α = .95), and scores discriminated between socio-demographic categories. Concurrent validity with the EQ-5D-5L was confirmed for physical and psychological domains. Performance was similar to the WHOQOL-BREF. CONCLUSION: The WHOQOL-Combi offers a contemporary, comprehensive, integrated, multi-dimensional subjective QoL instrument with enhanced evaluations of social, spiritual, psychological and physical QoL. Acceptable to older people, future research should evaluate younger age groups and other cultures.

Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study.

OBJECTIVES: Motor neurone disease (MND) is a progressive, life-limiting illness. Caregiving impacts greatly on family carers with few supportive interventions for carers. We report Stages 1 and 2 of a study to: (1) explore experiences of MND caregiving and use carer-identified support needs to determine suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT), (2) adapt the CSNAT as necessary for comprehensive assessment and support of MND carers, prior to (Stage 3) feasibility testing. DESIGN: Qualitative: focus groups, interviews and carer workshops. SETTING: Three UK MND specialist centres serving a wide range of areas. PARTICIPANTS: Stage 1: 33 carers, 11 from each site: 19 current carers, 14 bereaved. Stage 2: 19 carer advisors: 10 bereaved, 9 current carers. Majority were spouses/partners ranging in age from under 45 years to over 75 years. Duration of caring: 4 months to 12.5 years. RESULTS: Carers described challenges of a disease that was terminal from the outset, of 'chasing' progressive deterioration, trying to balance normality and patient independence against growing dependence, and intensive involvement in caregiving. Carers had extensive support needs which could be mapped to existing CSNAT domains: both 'enabling' domains which identify carers' needs as co-workers as well as carers' 'direct' needs as clients in relation to their own health and well-being. Only one aspect of their caregiving experience went beyond existing domains: a new domain on support needs with relationship changes was identified to tailor the CSNAT better to MND carers. CONCLUSIONS: Carers of people with MND found the adapted CSNAT to be an appropriate and relevant tool for assessment of their support needs. The revised version has potential for assessment of carers in other longer-term caring contexts. A further paper will report the Stage 3 study on feasibility of using the adapted CSNAT in routine practice.

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

BACKGROUND: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. AIM: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. DESIGN: Longitudinal qualitative study with thematic analysis. SETTING/PARTICIPANTS: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. RESULTS: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. CONCLUSIONS: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

Equity and the financial costs of informal caregiving in palliative care: a critical debate.

BACKGROUND: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. METHODS: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. RESULTS: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. CONCLUSIONS: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

What Do U.K. Orthopedic Surgery Patients Think About PROMs? Evaluating the Evaluation and Explaining Missing Data.

The NHS routinely evaluates the quality of life of patients receiving hip or knee replacement surgery using patient-reported outcome measures (PROMs), but some hospital completion rates are only 30%, restricting data usefulness. Statistics limit insights into how and why data are missing, so qualitative methods were used to explore this issue. Observation periods preceded semistructured interviews with 34 preoperative patients attending an orthopedic outpatient clinic. Interview themes covered: completion time/timing, orientation, setting, measures, and practicalities. Triangulated against observations, pragmatic barriers, and facilitators were considered. Refined themes included completion conditions, patient support, and national delivery. Simple improvements (e.g., quiet zone) could improve completion rates and reducing missing data. Reorganizing preoperative leaflets and their systematic distribution via standardized procedures could reassure patients, enhancing PROMs acceptance, while reducing inquiries and subsequent staff burden. Findings have implications for interpreting national statistics. They indicate that further debate about mandating preoperative PROMs is due.

How Should End-of-Life Advance Care Planning Discussions Be Implemented According to Patients and Informal Carers? A Qualitative Review of Reviews.

CONTEXT: The goal of advance care planning (ACP) is to help ensure that the care people receive during periods of serious illness is consistent with their preferences and values. There is a lack of clear understanding about how patients and their informal carers feel ACP discussions should be implemented. OBJECTIVES: The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. METHODS: This is a systematic review of reviews. RESULTS: We identified 55 literature reviews published between 2007 and 2018. ACP discussions were facilitated by a diverse range of formats and tools, all of which were acceptable to patients and carers. Patients and carers preferred health professionals to initiate discussions, with the relationships they had with the professionals being particularly important. There were mixed feelings about the best timing, with many people preferring to defer discussions until they perceived them to be clinically relevant. ACP was felt to bring benefits including a greater sense of peace and less worry, but it could also be disruptive and distressing. Patients and carers perceived many benefits from ACP discussions, but these may differ from the dominant narratives about ACP in health policy and may move away from the narratives of RCTs and standardization in research and practice. CONCLUSION: Researchers and clinicians may need to adjust their approaches as current practices are not aligned enough with patients' and carers' preferences. Future research may need to test implementation strategies of ACP interventions to elucidate how benefits from standardization and flexibility might both be realized.

Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey.

BACKGROUND: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers' own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. AIM: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data. DESIGN: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers' psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient's last 3 months of life. PARTICIPANTS: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 ( N = 6477-6790). RESULTS: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers' general health scores were lower than population scores, median 75 (interquartile range, 50-80) versus 80 (interquartile range, 70-90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers. CONCLUSION: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.

BACKGROUND: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients' preferences and government policy. However, the value of care-givers' contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers' contribution to end-of-life care. AIM: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. DESIGN: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1-16 May 2015. Data were collected on decedents' health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. RESULTS: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent's life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent's life. CONCLUSION: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers' contributions.

The relationship between smoking and quality of life in advanced lung cancer patients: a prospective longitudinal study.

PURPOSE: Smoking is a major cause of lung cancer, and continued smoking may compromise treatment efficacy and quality of life (health-related quality of life (HRQoL)) in patients with advanced lung cancer. Our aims were to determine (i) preference for treatments which promote quality over length of life depending on smoking status, (ii) the relationship between HRQoL and smoking status at diagnosis (T1), after controlling for demographic and clinical variables, and (iii) changes in HRQoL 6 months after diagnosis (T2) depending on smoking status. METHODS: Two hundred ninety-six patients with advanced lung cancer were given questionnaires to assess HRQoL (EORTC QLQ-C30), time-trade-off for life quality versus quantity (QQQ) and smoking history (current, former or never smoker) at diagnosis (T1) and 6 months later (T2). Medical data were extracted from case records. RESULTS: Questionnaires were returned by 202 (68.2 %) patients at T1 and 114 (53.3 %) at T2. Patients favoured treatments that would enhance quality of life over increased longevity. Those who continued smoking after diagnosis reported worse HRQoL than former smokers or those who never smoked. Smoking status was a significant independent predictor of coughing in T1 (worse in smokers) and cognitive functioning in T2 (better in never smokers). CONCLUSIONS: Smoking by patients with advanced lung cancer is associated with worse symptoms on diagnosis and poorer HRQoL for those who continue smoking. The results have implications to help staff explain the consequences of smoking to patients.

The effect of smoking on health-related quality of life in lung cancer patients: a systematic review.

INTRODUCTION: Given poor survival rates for lung cancer, health-related quality of life (HRQoL) is very important. Smoking is prevalent among those diagnosed with lung cancer, and continued smoking is associated with compromised HRQoL in other patient groups. AIMS: A systematic review was conducted to determine: (i) differences in HRQoL between lung cancer patients who smoke compared with those who quit or never smoked and (ii) changes in HRQoL in patients who continue to smoke after diagnosis compared with those who quit or never smoked. METHOD: Scopus, Medline, PubMed, PsychINFO and Web of Knowledge from January 1995 to June 2010 were searched. The included studies were assessed and given a score for quality. RESULTS: Eight studies met the inclusion criteria. Four studies showed that lung cancer patients who smoked report impaired HRQoL compared with those who never smoked or had quit. Smokers reported significantly lower HRQoL than former smokers, who in turn reported lower HRQoL than never smokers. This finding remained consistent over time. CONCLUSIONS: When taking account of methodological quality, smoking is associated with poorer HRQoL in lung cancer patients. These results suggest that programmes are needed to address the specific support needs of this group and promote HRQoL during their final months. Longitudinal research is necessary to further understand the association between smoking and HRQoL.