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.

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. 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. 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. 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). 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. 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 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. The objective of this study was to synthesize literature reviews pertaining to patients' and informal carers' perspectives on ACP discussions. This is a systematic review of reviews. 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. 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.

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.

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.