Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents.

PURPOSE: This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people's future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion of well-becoming indicators could ensure that opportunities to invest in promoting wellbeing in children's futures are not missed. METHODS: In-depth, qualitative interviews (N = 70) were undertaken with children and young people aged 6-15 years and their parents. Analysis used constant comparison and framework methods to investigate whether well-becoming factors were considered important by informants to children and young people's current wellbeing. RESULTS: The findings of the interviews suggested that children and young people and their parents are concerned with future well-becoming now, as factors such as future achievement, financial security, health, independence, identity, and relationships were identified as key to future quality of life. Informants suggested that they considered it important during childhood to aspire towards positive outcomes in children and young people's futures. CONCLUSION: The study findings, taken alongside relevant literature, have generated evidence to support the notion that future well-becoming is important to current wellbeing. We have drawn on our own work in capability wellbeing measure development to demonstrate how we have incorporated a well-becoming attribute into our measures. The inclusion of well-becoming indicators in measures could aid investment in interventions which more directly improve well-becoming outcomes for children and young people.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM.

BACKGROUND: The ICECAP-Supportive Care Measure (SCM) is a self-complete measure developed to inform economic decision making at the end-of-life. Previous research has demonstrated its feasibility in hospice and nursing home settings. This is the first study of its use with patients on the organ failure trajectory. AIM: To determine the feasibility of using the ICECAP-SCM with patients experiencing end-stage organ failure in a hospital setting. DESIGN: Participants were asked to 'think aloud' when completing the ICECAP-SCM, ICECAP-A and EQ-5D-5L measures. The interviews were transcribed verbatim and examined for errors in comprehension, retrieval, judgement, and response by five raters. Qualitative data were collected to explore reasons for errors in completing the measures and participants' views about the measures. SETTING/PARTICIPANTS: Sixty patients (with end-stage renal failure n = 18; end-stage heart failure n = 21; end-stage chronic obstructive pulmonary disease n = 21) participated. Senior clinicians applied prognostic criteria to determine eligibility. RESULTS: Participants reported that the measures were acceptable, clear, and easy to complete. Error rates in completing the measures were low (ICECAP-A = 3%,and ICECAP-SCM = 5.7% and EQ-5D-5L = 6.3%). There was some variation in responses between patients with different end-stage conditions, particularly those with symptom fluctuation. Some patients had not considered their end-of-life (i.e. advance care planning) and reported finding questions about this difficult to answer. CONCLUSION: It is feasible to use the ICECAP-SCM with patients with end-stage organ failure receiving care in hospital settings. This study provides evidence for researchers and policy makers involved in measuring end-of-life care globally. The ICECAP-SCM can be recommended for research with patients in end-stage organ failure to appropriately capture the broader benefits of end-of-life care.

"It is not a scientific number it is just a feeling": Populating a multi-dimensional end-of-life decision framework using deliberative methods.

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualization of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach. Twelve focus groups were held (38 members of the public, 29 "policy makers," seven hospice volunteers); budget pie tasks were completed to generate weights. Constant comparison was used to analyze qualitative data, exploring principles behind individuals' weightings. Average weights elicited from members of the general population and policy makers for the importance that should be given to close persons (vs. patients) were very similar, at around 30%. A "sliding scale" of weights between health gain and the capability for a good death resulted from the policy maker and volunteer groups, with increasing weight given to the capability for a good death as the trajectory got closer to death. These weights can be used in developing a more comprehensive framework for economic evaluation at end of life.

Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions.

Methods for measuring outcomes suitable for economic evaluations of health and care interventions have primarily focused on adults. The validity of such methods for children and young people is questionable in areas including the outcome domains measured and how they are measured and valued, with most existing measures narrowly focusing on health. Novel methods for assessing benefits beyond health by focusing on a person's capability have also concentrated on adults to date. This paper aims to set out the rationale for capability measures in children and young people. It argues for the need to expand the evaluative space beyond health functioning towards broader capabilities, with children and young people playing an integral role in capability measure development. Drawing from existing literature, specific challenges related to the identification, measurement, and valuation of capabilities in children and young people are also discussed. Finally, the practical implications for conducting economic evaluation when measuring and valuing capabilities at different stages across the life-course are illustrated. We develop an alternative framework based on conceiving capabilities as evolving across the life-course. This framework may also be helpful in thinking about how to model health outcomes across the life-course.

Valuing end-of-life care: translation and content validation of the ICECAP-SCM measure.

BACKGROUND: The evaluation of care strategies at the end of life is particularly important due to the globally increasing proportion of very old people in need of care. The ICECAP-Supportive Care Measure is a self-complete questionnaire developed in the UK to evaluate palliative and supportive care by measuring patient's wellbeing in terms of 'capability'. It is a new measure with high potential for broad and international use. The aims of this study were the translation of the ICECAP-Supportive Care Measure from English into German and the content validation of this version. METHODS: A multi-step and team-based translation process based on the TRAPD model was performed. An expert survey was carried out to assess content validity. The expert panel (n = 20) consisted of four expert groups: representative seniors aged 65+, patients aged 65+ living in residential care, patients aged 65+ receiving end-of-life care, and professionals in end-of-life care. RESULTS: The German version of the ICECAP-Supportive Care Measure showed an excellent content validity on both item- and scale-level. In addition, a high agreement regarding the length of the single items and the total length of the questionnaire as well as the number of answer categories was reached. CONCLUSIONS: The German ICECAP-SCM is a valid tool to assess the quality of life at the end of life that is suitable for use in different settings. The questionnaire may be utilized in multinational clinical and economic evaluations of end-of-life care.

A Systematic Review of the Feasibility and Psychometric Properties of the ICEpop CAPability Measure for Adults and Its Use So Far in Economic Evaluation.

OBJECTIVES: Development of the ICEpop CAPability measure for Adults (ICECAP-A) was reported in 2012; use of certain capability measures was suggested in the context of social or long-term care soon afterward by decision-making organizations in the United Kingdom and The Netherlands. Despite enthusiasm for the ICECAP-A, this study represents the first attempt to collate evidence on its psychometric properties and its use in economic analysis. METHODS: A systematic review of studies published between January 2012 and February 2019 that have either explored the psychometric properties of the ICECAP-A (validity, reliability, and responsiveness) or report its use in economic analysis. RESULTS: Twenty-seven studies were identified, 11 undertaking some form of economic analysis (including pilot and feasibility studies) and 16 assessing psychometric properties (7 assessing construct validity). The ICECAP-A has mainly been used in the United Kingdom, but also in other English-speaking countries and in Europe, across a wide range of healthcare contexts. There is promising evidence on content validity, construct validity, and responsiveness. Although there was consistently strong associations between the ICECAP-A and the Assessment of Quality of Life-Eight Dimension, associations with the EuroQol 5-dimension 3-level and EuroQol 5-dimension 5-level were inconsistent. In some cases, it was found that a switch in evaluative space from health to capability well-being would alter resource allocation decisions. CONCLUSION: The ICECAP-A is correlated with health-related quality of life but is most appropriately regarded as a complement for and not a substitute to the EuroQol 5-dimension 3-level and EuroQol 5-dimension 5-level in particular. Positive evidence of the measure's content and construct validity is beginning to accumulate, but further conceptual and policy debate is needed regarding the equity implications of switching between evaluative spaces.

ICECAP-O, the current state of play: a systematic review of studies reporting the psychometric properties and use of the instrument over the decade since its publication.

PURPOSE: A paper reporting the development of the ICECAP-O was published in 2006. Since then, there has been increasing interest in the use of capability-based measures within health economics and the ICECAP-O has been suggested for use in economic evaluation by decision-making bodies in the Netherlands and UK. METHODS: A systematic review of studies published between January 2006 and October 2018 which have assessed the psychometric properties of ICECAP-O or utilised the measure within economic evaluation. RESULTS: Twenty-four studies explored the psychometric properties of ICECAP-O and 21 have utilised the measure within economic evaluation; one study reported psychometric properties as well as utilising the measure within economic evaluation. The ICECAP-O has good construct validity and responsiveness, but there is evidence of some issues relating to content validity. In the context of economic evaluation, the ICECAP-O has, to date, mainly been included as a secondary economic measure and the reporting of results is brief with minimal detail and often no discussion. Five of the economic evaluation studies combined scores from ICECAP-O with time, but each used different terminology to describe this result. CONCLUSION: Focus, in terms of publications, appears to have shifted now from assessment of psychometric properties to the utilisation of the ICECAP-O within economic evaluation. Further research is needed with respect to a decision-rule for the ICECAP measures. This additional research should also guide users in terms of appropriate analysis, terminology and presentation of results, which are in-keeping with the conceptual framework underpinning the ICECAP-O.

Appropriate frameworks for economic evaluation of end of life care: A qualitative investigation with stakeholders.

BACKGROUND: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. AIM: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. DESIGN: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. PARTICIPANTS: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. RESULTS: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. CONCLUSION: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death.

A Systematic Review of the Techniques Used to Value Temporary Health States.

BACKGROUND: A broad literature on health state utility values exists, but compared with chronic health states (HSs), issues surrounding the valuation of temporary health states (THSs) have been poorly explored. OBJECTIVES: To assess the methods used by previous studies to value HSs that are considered temporary so as to determine the strengths and limitations associated with various approaches and to inform future study designs. METHODS: A systematic review was undertaken to explore the methods used, assess how the valuation was conducted for diseases that might lead to HSs deemed as temporary, and identify the challenges encountered in the valuation of THSs. RESULTS: Of the 36 relevant studies, 22 were explicit that the HS being valued was temporary. Most of the studies used more than one technique (often incorporating both conventional and adapted approaches). In using adapted techniques, the primary challenge was identifying an appropriate intermediate "anchor" HS and the possibility of negative utilities. CONCLUSIONS: There is no agreement on the most methodologically robust approach to THS valuation. Valuation is complex and important issues relating to the validity, practicality, and reliability of the techniques used were not adequately covered by most of the studies identified.

Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation.

BACKGROUND: End-of-life care affects both the patient and those close to them. Typically, those close to the patient are not considered within economic evaluation, which may lead to the omission of important benefits resulting from end-of-life care. AIM: To develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying. DESIGN: To develop the descriptive system for the outcome measure, in-depth qualitative interviews were conducted with the participants and constant comparative analysis methods were used to develop a descriptive system for the measure. PARTICIPANTS: Twenty-seven individuals bereaved within the last 2 years or with a close-person currently receiving end-of-life care were purposively recruited into the study. Participants were recruited through newsletters, adverts, snowball sampling and a local hospice. RESULTS: Twenty-seven individuals were recruited. A measure of capability with six attributes, each with five levels, was developed based on themes arising from the analysis. Attributes comprise the following: good communication with services, privacy and space to be with the loved one, emotional support, practical support, being able to prepare and cope and being free from emotional distress related to the condition of the decedent. CONCLUSION: This measure is designed to capture the benefits of end-of-life care to close-persons for use in economic evaluation. Further research should value the measure and develop methods for incorporating outcomes for close-persons into economic evaluation.

Cost-effectiveness of surgical interventions for the management of osteoarthritis: a systematic review of the literature.

BACKGROUND: The primary purpose of this study is to assess the existing evidence on the cost-effectiveness of surgical interventions for the management of knee and hip osteoarthritis by systematically reviewing published economic evaluation studies. METHODS: A systematic review was conducted for the period 2004 to 2016. Electronic databases were searched to identify both trial and model based economic evaluation studies that evaluated surgical interventions for knee and hip osteoarthritis. RESULTS: A total of 23 studies met the inclusion criteria and an assessment of these studies showed that total knee arthroplasty (TKA), and total hip arthroplasty (THA) showed evidence of cost-effectiveness and improvement in quality of life of the patients when compared to non-operative and non-surgical procedures. On the other hand, even though delaying TKA and THA may lead to some cost savings in the short-run, the results from the study showed that this was not a cost-effective option. CONCLUSIONS: TKA and THA are cost-effective and should be recommended for the management of patients with end stage/severe knee and hip OA. However, there needs to be additional studies to assess the cost-effectiveness of other surgical interventions in order for definite conclusions to be reached.

'The ICECAP-SCM tells you more about what I'm going through': A think-aloud study measuring quality of life among patients receiving supportive and palliative care.

BACKGROUND: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. AIM: To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. DESIGN: Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. SETTING/PARTICIPANTS: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). RESULTS: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. CONCLUSIONS: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals.

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

Is the UK NICE "reference case" influencing the practice of pediatric quality-adjusted life-year measurement within economic evaluations?

OBJECTIVES: To report findings from a systematic review, this article sought to address two related questions. First, how has the practice of UK pediatric cost-utility analyses evolved over time, in particular how are health-related outcomes assessed and valued? Second, how do the methods compare to the limited guidance available, in particular, the National Institute for Health and Care Excellence (NICE) reference case(s)? METHODS: Electronic searches of MEDLINE, Embase, and Cochrane databases were conducted for the period May 2004 to April 2012 and the Paediatric Economic Database Evaluation database for the period May 2004 to December 2010. Identified studies were screened by three independent reviewers. RESULTS: Forty-three studies were identified, 11 of which elicit utility values through primary research. A discrepancy was identified between the methods used for outcome measurement and valuation and the methods advocated within the NICE reference case. Despite NICE recommending the use of preference-based instruments designed specifically for children, most studies that were identified had used adult measures. In fact, the measurement of quality-adjusted life-years is the aspect of economic evaluation with the greatest amount of variability and the area that most digressed from the NICE reference case. CONCLUSIONS: Recommendations stemming from the review are that all studies should specify the age range of childhood and include separate statements of perspective for costs and effects as well as the reallocation of research funding away from systematic review studies toward good quality primary research measuring utilities in children.

What does a "good life" mean for people living with dementia? A protocol for a think-aloud study informing the value of care.

Introduction: Economic evaluation currently focuses almost exclusively on the maximization of health, using the Quality-Adjusted Life-Year (QALY) framework with instruments such as the EQ-5D, with a limited number of health-focused dimensions providing the assessment of health benefit. This evaluative framework is likely to be insufficient for setting priorities in dementia care because of its exclusive concern with health. Data are also often collected from the perspective of a proxy, limiting the voice of those living with dementia in decision-making. This protocol describes a research project that aims to gather the perspectives of people living with dementia, their insights, and preferences for assessing their quality of life to inform economic evaluation outcome measurement and design with a goal of creating a more robust evidence base for the value of healthcare services. Specifically, this study will elucidate what a "good life" means to people living with dementia and how well instruments currently used in economic evaluation meet this description. This project will further test the acceptability of capability wellbeing instruments as self-report instruments and compare them to generic and dementia-specific preference-based instruments. Methods and analysis: People living with dementia, diagnosed, or waiting to receive a formal diagnosis and with the capacity to participate in research, will be invited to participate in an hour "think aloud" interview. Participants will be purposefully selected to cover a range of dementia diagnoses, age, and sex, recruited through the integrated care, geriatric, and post-diagnostic clinics at St James' and Tallaght University Hospitals and dementia support groups in the Ireland. During the interview, participants will be invited to reflect on a "good life" and "think aloud" while completing four economic quality of life instruments with a perspective that goes beyond health (AD-5D/QOL-AD, AQOL-4D, ICECAP-O, ICECAP-SCM). An interviewer will then probe areas of difficulty when completing the instruments in a semi-structured way. The analysis will identify the frequency of errors in comprehension, retrieval, judgment, and response from verbatim transcripts. Qualitative data will be analyzed using constant comparison. Ethics: The St James's Hospital and Tallaght University Hospital Joint Research Ethics Committee approved the study (Approval Date: 11 April 2022).

Eliciting a monetary threshold for a year of sufficient capability to inform resource allocation decisions in public health and social care.

AIM: To elicit a deliberative monetary value for a year of sufficient capability well-being (YSC) and a year of full capability (YFC), to inform decision-making in the contexts of social care and public health. METHODS: 69 members of the public, recruited from purposively selected electoral wards across the West Midlands Region of England, attended one of six deliberative workshops in 2017. Participants were informed about the nature of public health and social care, and the funding of these services by local authorities. Participants were then asked to report: their willingness to pay additional tax (ring-fenced for social care/public health services); and the maximum amount they would be willing to allocate for social care/public health services from an existing local authority budget. In both cases they were asked to assume that the funding would result in improved well-being equivalent to a YSC. The second task was repeated for improved well-being equivalent to a YFC. Representatives from the six initial workshops reconvened at a consensus workshop to arrive at a final arbitrated value for a YSC and YFC. RESULTS: Mean values elicited during the initial workshops increased after discussion (from £442 to £451 in the case of WTP additional tax). Almost half of participants changed their response post-discussion when reporting a societal (aggregated) WTP. The arbitrated value of a YSC was £33,500, with a range of £33,500 to £36,150 emerging as the value of a YFC. DISCUSSION: This is the first study to use a deliberative approach to elicit a monetary threshold for an additional YSC/YFC. Qualitative research supports the validity of responses to the taxation question. Deliberation appears to have influenced the societal (aggregated) values reported by participants. CONCLUSION: Future research should explore the robustness of a monetary threshold of £33,500 for a YSC.

Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals.

BACKGROUND: The ICECAP capability measures are increasingly being used to capture the impact of health and social care interventions on well-being. In cases where the recipient of an intervention is highly vulnerable, proxy completion may be necessary. This study adds to the limited existing evidence on proxy completion of ICECAP-A specifically and adopts the novel approach of investigating multiple proxy responses for the same four (hypothetical) individuals. METHODS: 62 members of the public who were participating in a series of one day deliberative workshops on public health and social care completed ICECAP-A on behalf of four hypothetical individuals, described in vignettes. Quantitative analysis explored the range of proxy responses for each of the four hypothetical individuals, and any possible correlation between participants' own characteristics and their proxy responses. Participants discussed their proxy responses after completing the task; this discussion was audio recorded and analysed using Framework Analysis. RESULTS: Wide variation in ICECAP-A scores was observed across proxy respondents for each hypothetical individual. Participants' demographic characteristics and own well-being do not appear to have systematically influenced proxy responses. Qualitative analysis suggests two principal approaches (or perspectives) were adopted by participants: Empathetic (adopting the perspective of the 'subject') and factual (a factual assessment of the subject's well-being). Participants also drew on their own experiences to varying degrees. There were differing interpretations of the Independence attribute on ICECAP-A and some evidence that participants' ideas of what constituted achievement were context (including life-stage and condition/health) specific. CONCLUSIONS: The factual versus empathetic approaches identified from qualitative analysis in this study match to the concept of a proxy-proxy versus proxy-patient perspective, previously outlined in the literature. Researchers should consider specifying which perspective proxy raters should adopt. Findings also suggest proxy responses can be influenced by external points of reference and interpretation of measure attributes.

Using deliberative methods to establish a sufficient state of capability well-being for use in decision-making in the contexts of public health and social care.

BACKGROUND: Health maximisation is unlikely to be a relevant objective for social care, where service users and the workforce have distinct priorities and needs. NICE permit use of a small number of capability-based measures for the evaluation of social care, including ICECAP-A, a measure with five attributes, each with four levels. AIM: To establish a sufficient state of capability well-being, as defined by ICECAP-A, through public deliberation, and evaluate and critically reflect on the deliberative process. METHODS: A series of one-day/6.5 h citizens' workshops were conducted, with recruitment from within purposively selected local authority areas. Workshops consisted of a mixture of background information, individual tasks, group discussion and voting. Representatives from each workshop were then invited to attend a 'consensus workshop'. Follow-up interviews facilitated evaluation of the deliberative process. RESULTS: 62 participants took part in deliberative work, across eight workshops. Participants actively engaged and provided positive feedback about their experience. Key considerations for participants included: the realistic ability of public services to enhance some areas of well-being; not removing incentives for self-help and avoiding state intrusion; building resilience and enabling people to 'give back to society'; ensuring that people are not left with a standard of well-being that is morally indefensible. The resulting sufficient state of capability well-being (defined by ICECAP-A) was 3,3,3,3,3 (where the best possible state is 4,4,4,4,4). CONCLUSION: Through a deliberative approach, representatives of the public were able to debate a complex social issue and reach a consensus decision on a sufficient state of capability well-being.

Close-Person Spill-Overs in End-of-Life Care: Using Hierarchical Mapping to Identify Whose Outcomes to Include in Economic Evaluations.

BACKGROUND: Guidelines for economic evaluations often request that costs and outcomes beyond the patient are captured; this can include carers and also other affected parties. End-of-life care is one context where impacts of care spill over onto those other than patients, but there is little evidence about who should be included within economic evaluations. OBJECTIVE: The purpose of this article was to examine (1) how many people are close to those at the end of life (2); their characteristics; and (3) what influences the network size at the end of life. METHODS: In-depth interviews were conducted with 23 participants who were either recently bereaved or had somebody close to them currently receiving end-of-life care. Interviews were used in conjunction with hierarchical mapping to explore the network size and composition and influences upon these networks. Interviews were transcribed verbatim. Descriptive statistics were used to analyse the hierarchical maps and this information was combined with a constant comparative analysis of the qualitative data. RESULTS: On average, close-person networks at the end of life contained eight individuals, three of whom were rated as being 'closest'. These were typically family members, although in a small number of cases non-family members were included amongst the closest individuals. There was variation in terms of network composition. Qualitative analyses revealed two key influences on network size: death trajectory (those with cognitive problems/diseases towards the end of life had smaller networks) and family size (larger families had larger networks). CONCLUSIONS: The findings of this article have important implications for researchers wishing to include those affected by end-of-life care in an economic evaluation. Focussing on the three closest individuals would be a key starting point for economists seeking to capture spill-overs, whilst a truly societal perspective would require looking beyond proximal family members. This article further discusses the implications of including close persons in economic evaluations for decision makers.