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Aim: Explore the use of deliberative valuation to elicit relative weights for a set of capabilities identified as being important and relevant to those close to patients receiving supportive care at the end of life. Methods: Focus groups, involving the general UK population (n = 38) and policy-makers (n = 29) with experience of, and influence on, priorities for end of life care. Public participants completed two valuation tasks (budget pie and visual analogue scale (VAS)) individually, discussed their responses, and then recorded a final (individual) response. Policy-makers completed the VAS tasks in a separate series of focus groups. Quantitative and qualitative analyses of participants’ responses are reported. Results: Individual values were aggregated to form relative weights for the capabilities. Capabilities given greatest weighting were “good communication between care providers and close persons” and “practical support for close persons”. The quantitative impact of deliberation on weights overall was negligible, but qualitative findings indicated that disclosure of personal experiences did appear to prompt others to consider issues from new perspectives. Discussion: Deliberative valuation was found to be a potentially feasible method for generating weights. However, further consideration needs to be given as to how to optimise recruitment whilst ensuring that participants actively engage with the task.

Background and objectiveHealth and social care may affect unpaid (family) carers’ health and wellbeing in addition to patients’ lives. It is recommended that such impacts (carer effects) are considered in decision-making. However, the scope of carer effects and range of decisions where carer effects should be considered is uncertain. This study aimed to identify: (i) how different categories of healthcare and social care were perceived to impact on unpaid carers; and (ii) whether there was consensus about when carer effects should be formally considered in decision-making contexts.MethodsA two round, online Delphi study was conducted with 65 UK-based participants (unpaid carers, care professionals, and researchers) with expertise in dementia, mental health, and stroke. Participants considered two broad forms of ‘interventions’ (patient treatment and replacement care) and two broad forms of ‘organisational change’ (staffing and changes in timing/location of care). Participants assessed the likely impacts of these on unpaid carers and whether impacts should be considered in decision-making.ResultsParticipants predicted interventions and organisational changes would impact on multiple domains of unpaid carers’ lives, with ‘emotional health’ the most likely outcome to be affected. Patient treatment and replacement care services (‘interventions’) were associated with positive impacts across all domains. Conversely, timing/location changes and staffing changes (‘organisational changes’) were perceived to have mixed and negative impacts. There was widespread support (80–81 %) for considering carer effects in research studies, funding decisions, and patient decision-making.ConclusionsThis study highlights a perception that carer effects are widespread and important to consider in economic evaluation and decision-making. It highlights the particular need to measure and value effects on carers’ emotional health and the need to use a societal perspective to avoid cost shifting to unpaid carers when introducing interventions and making organisational changes.

Objectives Dementia affects many people, with numbers expected to grow as populations age. Many people with dementia receive informal/family/unpaid care, for example, from a spouse or child, which may affect carer quality of life. Measuring the effectiveness of health/social care interventions for carers requires a value measure of the quality-of-life impact of caring. This motivated development of the Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) instrument. This study aimed to obtain general population values for SIDECAR-D to aid incorporating the impact of caring in economic evaluation. Methods Members of the UK general public completed a best–worst scaling object case survey, which included the 18 SIDECAR-D items and EQ-5D-3L descriptions. Responses were analyzed using scale-adjusted finite mixture models. Relative importance scores (RISs) for the 18 SIDECAR-D items formed the SIDECAR-D relative scale measuring the relative impact of caring. The SIDECAR-D tariff, on the full health = 1, dead = 0 scale, was derived by rescaling EQ-5D-3L and SIDECAR-D RISs so the EQ-5D-3L RISs equaled anchored valuations of the EQ-5D-3L pits state from a visual analog scale task. Results Five hundred ten respondents completed the survey. The model had 2 parameter and 3 scale classes. Additive utility decrements of SIDECAR-D items ranged from –0.05 to –0.162. Utility scores range from 0.95 for someone affirming 1 item to –0.297 for someone affirming all 18. Conclusion SIDECAR-D is a needs-based scale of the impact on quality of life of caring for someone with dementia, with a valuation tariff to support its use in economic evaluation., Highlights • Many people with dementia receive informal care; Scales Measuring the Impact of Dementia on Carers-D (SIDECAR-D) is a survey instrument measuring the burden of caring. • Two scoring systems are provided, the SIDECAR-D relative scale, which measures the relative burden of caring on a 0-100 scale, and the SIDECAR-D tariff, which measures the burden on a scale anchored at full health = 1 and dead = 0. • Utility decrements of SIDECAR-D items can be as great as –0.162 on the full health = 1, dead = 0 scale.

The complexity and severity of rare genetic conditions pose substantial burden to families. While the importance of spillovers on carers’ health in resource allocation decisions is increasingly recognised, there is significant lack of empirical evidence in the context of rare diseases. The objective of this study was to estimate the health spillovers of paediatric rare genetic conditions on parents. Health-related quality-of-life (HRQoL) data from children with rare genetic conditions (genetic kidney diseases, mitochondrial diseases, epileptic encephalopathies, brain malformations) and their parents were collected using the CHU9D and SF-12 measures, respectively. We used two approaches to estimate parental health spillovers. To quantify the ‘absolute health spillover’, we matched our parent cohort to the Australian general population. To quantify the ‘relative health spillover’, regression models were applied using the cohort data. Parents of affected children had significantly lower HRQoL compared to matched parents in the general public (− 0.06; 95% CIs − 0.08, − 0.04). Multivariable regression demonstrated a positive association between parental and child health. The mean magnitude of HRQoL loss in parents was estimated to be 33% of the HRQoL loss observed in children (95% CIs 21%, 46%). Paediatric rare genetic conditions appear to be associated with substantial parental health spillovers. This highlights the importance of including health effects on family members and caregivers into economic evaluation of genomic technologies and personalised medicine. Overlooking spillover effects may undervalue the benefits of diagnosis and management in this context. This study also expands the knowledge of family spillover to the rare disease spectrum.

Objectives Carer quality-of-life (QoL) effects are recommended for inclusion in economic evaluations, but little is known about the relative performance of different types of QoL measures with carers. This study evaluated the validity and responsiveness of 3 care-related QoL measures (the Carer Experience Scale [CES], CarerQoL-7D, and ASCOT-Carer), 1 health-related QoL measure (the EQ-5D-5L), and 1 generic QoL measure (the ICECAP-A). Methods Validity and responsiveness were assessed in a UK sample of informal carers of adults with dementia, stroke, mental illness, or rheumatoid arthritis. A questionnaire containing the 5 QoL measures was posted to carers identified through the Family Resources Survey (N = 1004). Hypotheses regarding the anticipated associations between constructs related to the QoL of carers were tested to investigate construct validity and responsiveness. Results Each measure exhibited some level of construct validity. In general, larger effect sizes and stronger associations were detected for the ASCOT-Carer and ICECAP-A measures in the pooled sample and across all conditions. The 5 measures did not exhibit clear responsiveness to changes over a 12-month period in care recipient health status or hours of care provided per week. Conclusion The results of this study provide initial evidence of the validity of care-related, health-related, and generic QoL (capability) measures in informal carers of adults with 4 highly prevalent conditions. Care-related measures were not always more sensitive to constructs associated with QoL of carers compared with generic measures. The performance of the ICECAP-A was comparable with that of the best-performing care-related measure, the ASCOT-Carer.

Background\ud 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.\ud \ud Objective\ud 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.\ud \ud Methods\ud 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.\ud \ud Results\ud 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).\ud \ud Conclusions\ud 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.

Introduction Stigma remains a key issue for many health screening interventions such as screening for sexually transmitted infections (STIs). Young people continue to experience the greatest burden of STI infection. In order to increase uptake, screening services need to be more patient-focused. This study sought to examine young people's preferences for sexual health screening to understand how scarce public health resources can optimise screening uptake. Methods This study involved both qualitative and quantitative components. Focus groups and individual interviews were undertaken with young people aged 16–24 recruited from community settings and a specialist clinic. Themes which emerged from the focus groups were used to inform the design of a discrete choice experiment (DCE). A questionnaire survey (incorporating the DCE) was conducted with members of an internet panel, with over-sampling of black, Asian and minority ethnic groups. Results Overall, 41 participants took part in eight focus groups and two in individual interviews. Six major themes emerged as important when making decisions about STI screening - stigma and embarrassment; knowledge about STIs and risk; where to get tested; how staff would treat them; what STIs to be tested for; and convenience (waiting times). Overall, 1946 participants took part in the survey. The DCE results revealed that the most important factors for young people are that all STIs are tested for, and that staff attitude is non-judgemental. The results also suggest that there is a preference for screening in specialist clinics and for full appointments over limited ones. Although respondents preferred shorter time periods for appointments and results, other ‘process’ factors were also important. Conclusion This study demonstrates that by combining qualitative and quantitative methods, a richer understanding of STI screening preferences is possible. The findings show that comprehensive testing and a perceived ‘non-judgemental’ attitude are particularly important to young people, as well as convenience.

Patient and public involvement (PPI) can be used in methods research, as well as applied research, in health economics. However, methods research goals may seem quite abstract when compared to the lived experiences of lay participants. This article draws on 4 years of PPI in a research project to develop methods for including family carer outcomes in economic evaluation. Key challenges in using PPI for health economics methods research relate to (1) training and preparation, (2) maintaining involvement, and (3) selecting suitable tasks. We suggest three criteria for selecting a research task for PPI input based on task importance, professional researcher skills gap, and potential PPI contribution.

Demographic and epidemiological changes place an increasing reliance on informal carers. Some support programmes exist, but funding is often limited. There is a need for economic evaluation of interventions for carers to assist policymakers in prioritizing carer support. Our aim was to systematically review and critically appraise cost–utility analyses of interventions for informal carers, in order to assess the methods employed and the quality of the reporting. A systematic review of databases was conducted using MEDLINE, Embase, PsycINFO, and EconLit of items published between 1950 and February 2019. Published studies were selected if they involved a cost–utility analysis of an intervention mainly or jointly targeting informal carers. The reporting quality of economic analyses was evaluated using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement. An initial set of 1364 potentially relevant studies was identified. The titles and the abstracts were then screened, resulting in the identification of 62 full-text articles that warranted further assessment of their eligibility. Of these, 20 economic evaluations of informal carer interventions met the inclusion criteria. The main geographical area was the UK (n = 11). These studies were conducted in mental and/or behavioural (n = 15), cardiovascular (n = 3) or cancer (n = 2) clinical fields. These cost–utility analyses were based on randomized clinical trials (n = 16) and on observational studies (n = 4), of which only one presented a Markov model-based economic evaluation. Four of the six psychological interventions were deemed to be cost effective versus two of the four education/support interventions, and four of the nine training/support interventions. Two articles achieved a CHEERS score of 100% and nine of the economic evaluations achieved a score of 85% in terms of the CHEERS criteria for high-quality economic studies. Our critical review highlights the lack of cost–utility analyses of interventions to support informal carers. However, it also shows the relative prominence of good reporting practices in these analyses that other studies might be able to build on.

The "health spillover" of patient illness on family members is important to capture in economic evaluation. This study compares the construct validity and responsiveness of 2 widely used health-related quality-of-life instruments, the EQ-5D-5L and SF-6D, in capturing health spillover effects for family members with and without an informal care role (carers and noncarers).Construct validity and responsiveness were assessed using data from a 2012 UK survey of the family impact of meningitis-related sequelae. Construct validity was assessed by testing associations between family members' health status and variables anticipated to be associated with spillover effects (patient health status and informal care). Responsiveness was assessed by testing associations between the longitudinal change in family members' health status and longitudinal change in patient health and caring hours.Among noncarers, both the EQ-5D-5L and the SF-6D exhibited construct validity with 10 of the 11 associations that were hypothesized being statistically significant on both measures. There was less clear evidence of responsiveness of the measures for noncarers. Among carers, the EQ-5D-5L exhibited greater construct validity, as well as responsiveness, with respect to spillovers from patient health. This was evidenced by the EQ-5D-5L detecting 9 significant associations compared with 4 on the SF-6D. However, the SF-6D exhibited greater construct validity with respect to spillovers generated from informal care provision (5 associations significant compared with 2 on the EQ-5D-5L).Both the EQ-5D-5L and the SF-6D exhibited a degree of validity that could justify their use as measures of health-related quality-of-life spillovers on family members in economic evaluation.

In the aftermath of the 2008 financial crisis many countries embarked on a prolonged period of public sector ‘austerity’ which for some included seeking dramatic reductions in social security spending. It is in this context that the research investigates the negative impacts of interactions with the UK disability benefits system on the lives of disabled people. The research uses in-depth semi-structured interviews and a focus group to study the experiences of 49 people who either had an impairment or chronic health concern and/or were family carers for an adult or child with these concerns. The analysis identified four aggregate dimensions evidenced by the transcript data: harmful health and well-being consequences, negative financial and resource impacts, perverse employment effects and wider social disability concerns. These dimensions highlight how interactions with ‘social security’ policy in the contemporary context can have harmful, iatrogenic consequences for disabled people and their families.

ObjectivesIt is important to capture all health effects of interventions in cost-utility analyses conducted under a societal or healthcare perspective. However, this is rarely done. Household spillovers (health effects on patients’ other household members) may be particularly likely in the context of technologies and interventions to change behaviors that are interdependent in the household. Our objective was to prospectively collect outcome data from household members and illustrate how these can be included in a cost-utility analysis of a behavior change intervention in chronic obstructive pulmonary disease (COPD).MethodsData were collected from patients’ household members (n = 153) alongside a randomized controlled trial of a COPD self-management intervention. The impact of the intervention on household members’ EQ-5D-5L scores (primary outcome), was evaluated. Analyses were then carried out to estimate household members’ quality-adjusted life-years (QALYs) and assess the impact of including these QALYs on cost-effectiveness.ResultsThe intervention had a negligible spillover on household members’ EQ-5D-5L scores (−0.007; p = .75). There were also no statistically significant spillovers at the 5 percent level in household member secondary outcomes. In the base-case model, the inclusion of household member QALYs in the incremental cost-effectiveness ratio (ICER) denominator marginally increased the ICER from GBP 10,271 (EUR 13,146) to GBP 10,991 (EUR 14,068) per QALY gained.ConclusionsThis study demonstrates it is feasible to prospectively collect and include household members’ outcome data in cost utility analysis, although the study highlighted several methodological issues. In this case, the intervention did not impact significantly on household members’ health or health behaviors, but inclusion of household spillovers may make a difference in other contexts.

Health and care services for patients may improve or harm the wellbeing of their family carers. Formal consideration of these effects (also known as spillovers) in decision-making is advocated, but, to date, little is known about how they occur. This paper presents the first empirical study to determine the mechanisms by which health and care services affect family carers' wellbeing. The study focused on three major health conditions: dementia, stroke, and mental health. Focus groups and interviews were conducted with 49 purposefully sampled care professionals and family carers in the UK between December 2016 and September 2017. Transcripts were coded and analysed thematically, using descriptive accounts and an explanatory account. The analysis generated six over-arching mechanisms by which health and care services affect family carers' wellbeing, through: (i) information (degree to which service delivery informs and trains family carers); (ii) management of care (shifts of responsibility for care between formal and family sectors); (iii) patient outcomes (services changing patient outcomes); (iv) alienation (feelings of alienation or inclusion created by service delivery); (v) compliance (barriers to patients complying and engaging with services); and (vi) timing or location (changes in the timing or location of services). Each mechanism was associated with sub-themes relating to both positive and negative spillovers on the family carers. The six mechanisms can be summarised with the mnemonic 'IMPACT'. The IMPACT mechanisms may be useful in designing and evaluating services to optimise the wellbeing of carers as well as patients.

PurposeA desire to incorporate broader aspects of well-being in health economic evaluations has led to the development of the ICEpop CAPability measure for Adults (ICECAP-A). The ICECAP-A draws upon Amartya Sen’s capability approach and conceptualises well-being as the capability to achieve Stability, Attachment, Autonomy, Achievement, and Enjoyment. The aim of this study was to assess the psychometric performance of the ICECAP-A in a context where patient outcomes can extend beyond health-related quality of life.MethodsLongitudinal data were collected for 478 women with symptoms of urinary frequency and urgency, with or without incontinence. Women were recruited across 22 hospitals in the UK and had a mean age of 55 (SD 14). The psychometric performance of the measure was evaluated in relation to the EuroQol Five-Dimension Questionnaire (EQ-5D-3L) and the International Consultation on Incontinence Questionnaire for Overactive Bladder (ICIQ-OAB) and involved an assessment of acceptability, construct validity, and responsiveness using parametric and nonparametric methods.ResultsICECAP-A showed good convergence with the ICIQ-OAB with 20 out of 22 expected patterns of relationship confirmed. Findings suggested that the ICECAP-A has better discriminative properties than EQ-5D-3L and as good as those of the ICIQ-OAB, confirming expected associations with clinical and demographic factors. The ICECAP-A was more responsive than EQ-5D-3L and ICIQ-OAB to deteriorations of clinical symptoms. Improvements in symptoms were not valued as highly as deteriorations by either ICECAP-A or EQ-5D-3L.ConclusionsThe ICECAP-A is a valid and responsive measure capturing broad emotional and practical impacts of urinary symptoms on women’s well-being and could be considered for use in economic evaluations in this context.

Background: Pre-school children's daycare is associated with increased incidence of respiratory and diarrhoeal illnesses. While the incidence might be reduced if all unwell children were kept at home, parental employment pressures make this difficult when children are marginally unwell.Methods: A discrete choice experiment (DCE) was conducted to identify what aspects of daycare policy and provision would affect parents' decisions to keep marginally unwell children home. Prior qualitative research informed parameter choice. The DCE was accompanied by a best-worst scaling task examining preferences for four modifiable aspects of care: swapping unused daycare sessions, reimbursing unused sessions, daycare paracetamol policy and presence of a 'quiet room'.Results: Paracetamol guidelines and the presence of a quiet room had the strongest predicted influence on parents' decision-making. Conditional on assumptions about the set-up of the daycare, introducing a 'no paracetamol' policy would result in a fall from 62 to 25% in mean predicted probabilities of a parent sending a marginally unwell child to nursery, while introducing a quiet room would increase the mean probability from 34 to 53%.Conclusions: Daycare policy, particularly the use of paracetamol prior to attendance, could impact parents' decisions to send unwell children to daycare, potentially influencing the transmission of children's infectious illness.

BACKGROUND AND OBJECTIVES: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. METHODS: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review. RESULTS: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents. CONCLUSIONS: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.

BACKGROUND:Decisions regarding which vaccines are funded in the United Kingdom (UK) are increasingly informed by cost-effectiveness analyses. Such analyses use Quality Adjusted Life Years (QALYs) as a measure of effectiveness and assume that QALYs are equal regardless of where and in whom they occur in the population. However, there is increasing debate about whether this QALY approach is appropriate and whether societal preferences for childhood vaccinations should be used to help inform childhood immunisation policy.OBJECTIVE:To gauge the general public's preferences for prioritising certain characteristics of childhood vaccination, to help inform future policy making decisions in the UK.DESIGN:Qualitative design using individual face-to-face interviews, with data analysed using an inductive thematic framework approach.SETTING:Two counties in England, UK.POPULATION:Adult members of the general public were recruited using the Bristol and South Gloucestershire open electoral registers, using gender and deprivation quotas for each area.PARTICIPANTS:21 members of the public participated in qualitative interviews.RESULTS:The qualitative research identified three major themes and several key attributes that influences participant's opinions about priority setting for childhood vaccinations: (1) population segment (i.e. age group, carer impact and social group), (2) vaccine preventable diseases preferences (i.e. disease severity, disease incidence and declining infection) and (3) risks and benefits associated with childhood vaccinations (i.e. vaccine associated side-effects, herd protection and peace of mind).CONCLUSION:Evidence from this qualitative study suggests that some members of the UK general public have more nuanced views than the health-maximisation approach when considering how childhood vaccines should be prioritised. This is not necessarily captured by the current economic approaches for assessing the benefits from childhood vaccinations in the UK, but is an important area for future research to ensure appropriate decision making.

This paper reports the results of a best–worst scaling (BWS) study to value the Investigating Choice Experiments Capability Measure for Adults (ICECAP-A), a new capability measure among adults, in a UK setting. A main effects plan plus its foldover was used to estimate weights for each of the four levels of all five attributes. The BWS study was administered to 413 randomly sampled individuals, together with sociodemographic and other questions. Scale-adjusted latent class analyses identified two preference and two (variance) scale classes. Ability to characterize preference and scale heterogeneity was limited, but data quality was good, and the final model exhibited a high pseudo-r-squared. After adjusting for heterogeneity, a population tariff was estimated. This showed that ‘attachment’ and ‘stability’ each account for around 22% of the space, and ‘autonomy’, ‘achievement’ and ‘enjoyment’ account for around 18% each. Across all attributes, greater value was placed on the difference between the lowest levels of capability than between the highest. This tariff will enable ICECAP-A to be used in economic evaluation both within the field of health and across public policy generally. © 2013 The Authors. Health Economics published by John Wiley & Sons Ltd.

Purpose The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation. This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A). Methods In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews. Results Five over-arching attributes of capability wellbeing were identified for the measure: "stability", "attachment", "achievement", "autonomy" and "enjoyment". One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system. Conclusions The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions. © Springer Science+Business Media B.V. 2011.

\ud Purpose To investigate the construct validity of the\ud ICECAP-A capability wellbeing measure.\ud Methods A face-to-face interview-administered survey\ud was conducted with 418 members of the UK general\ud population, randomly sampled from the Postcode Address\ud File. Pre-specified hypotheses were developed about the\ud expected associations between individuals’ ICECAP-A\ud responses and their socio-economic circumstances, health\ud and freedom. The hypotheses were investigated using statistical\ud tests of association.\ud Results The ICECAP-A responses and scores reflected\ud differences across different health and socioeconomic\ud groups as anticipated, but did not distinguish individuals by\ud the level of local deprivation. Mean ICECAP-A scores\ud reflected individuals’ perceived freedom slightly more\ud closely than did measures of health and happiness.\ud Conclusion This study suggests that the ICECAP-A\ud measure can identify expected differences in capability\ud wellbeing in a general population sample. Further work\ud could establish whether self-reported capabilities exhibit\ud desirable validity and acceptability in sub-groups of the\ud population such as patients, social care recipients and\ud informal carers.

IntroductionDespite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify preference-based instruments for measuring care-related outcomes and provide guidance on the selection of instrument in palliative care economic evaluations.Methods and analysisA comprehensive search of the literature will be conducted from database inception (ASSIA; CINAHL; Cochrane library including DARE, NHS EED, HTA; Econlit; Embase; PsychINFO; PubMed). Published peer-reviewed, English-language articles reporting preference-based instruments for measuring care-related outcomes in any clinical area will be included. One researcher will complete the searches and screen the results for potentially eligible studies. A randomly selected subset of 10% citations will be independently screened by two researchers. Any disagreement will be resolved by consensus among the research team. Subsequently, a supplementary search will identify studies detailing the development, valuation, validation and application of the identified instruments. The degree of suitability of the instruments for palliative economic evaluations will be assessed using criteria in the International Society for Quality of Life Research minimum standards for patient-reported outcome measures, the checklist for reporting valuation studies of multiattribute utility-based instruments and information on the development of the instrument in the palliative setting. A narrative summary of the included studies and instruments will be provided; similarities and differences will be described and possible reasons for variations explored. Recommendations for practice on selection of instruments in palliative care economic analyses will be provided.Ethics and disseminationThis is a planned systematic review of published literature. Therefore, ethics approval to conduct this research is not required. Findings will be presented at leading palliative care and health economic conferences and published in a peer-reviewed journal.Trial registration numberCRD42016034188.

Such decisions may have important effects on family carers; decision making should formally consider them

Direct assessment of capability to function may be useful in healthcare settings, but poses many challenges. This paper reports a first investigation of the feasibility of individuals self-reporting their capabilities and the meaning of the responses. The study was conducted in 2010, using think-aloud interviews with participants in the UK. The findings of the study suggest that the majority of participants were able to comprehend questions about their capabilities, felt able to judge their own capability wellbeing and provided responses in line with this judgement. In a number of cases, for example in relation to ‘autonomy’, participants highlighted that their capability was potentially greater than their functioning. The findings also show varying interpretations of the capability concept, with some participants finding the capability concept unintuitive in relation to specific aspects of life (in particular, ‘attachment’). The findings suggest that guiding individuals in the process of identifying their capabilities may be important in generating consistent responses to capability questions., Highlights • Think-aloud interviews were used, in the UK, to study the response to capability wellbeing questions. • Most people felt able to judge their capabilities and made few obvious ‘errors’ in doing so. • The capability concept was unintuitive for some people in some aspects of their life. • Occasional divergence between capability and functioning was reported.