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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.

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.

Background: Recent debates on the introduction of new childhood vaccines in the UK have suggested that ‘peace of mind’ (PoM) might influence decision making. The aim of this study is to ascertain the importance of ‘PoM’ in individuals’ decision making. Methods: Four focus groups were conducted in the UK. Participants were 22 females and 2 males, aged 18–74 years, with a selection of non-parents, parents, guardians and foster carers. Data were analysed using an inductive thematic framework approach and conceptualised using the Health Belief Model, which provided an overview of participants’ perceptions and behaviours about childhood vaccinations. Results: Vaccine associated PoM was associated with individuals’ perceptions of disease severity, with individuals feeling more reassurance after obtaining vaccinations against diseases that they considered to be severe compared to relatively mild diseases. Conversely, concerns about vaccination side-effects reduced participants PoM, but the duration of this effect varied between individuals. Other factors, such as social pressure and the emotional anxiety related to children’s feelings, or physical reactions, to vaccinations also negatively impacted on participants’ vaccine associated PoM. Conclusion: Vaccine associated PoM was a consideration for some participants seeking vaccinations but was only a minor motivating factor for these individuals. These differences stemmed from whether participants received PoM from the uptake of a vaccination because they perceived some intrinsic benefit from it or, conversely, they considered vaccinations as a routine health intervention. Overall, vaccine related PoM varied between participants in magnitude and fluctuated over time, even in the same individuals.

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.

As the cross-cultural use of outcome measures grows, it is important to determine whether these instruments are: appropriate for use in other settings, translated accurately, and perform in a similar manner to their original tools. This research aimed to compare the validity of the German translation of the ICECAP-A to the original English version of the instrument, across healthy adults and seven health condition groups (arthritis, asthma, cancer, depression, diabetes, hearing loss and heart disease). Data were analysed from a cross-cultural study, which recruited participants through online panels in 2012. Data were analysed on capability wellbeing (ICECAP-A), health-related quality of life (EQ-5D-5L and SF-6D), satisfaction with life (SWLS), and a series of other condition-specific outcome measures. The ICECAP-A was assessed for internal consistency, convergent validity and construct validity. 2501 individuals were included in the analysis. The ICECAP-A demonstrated good internal consistency within Germany and the UK population, and across all seven health condition sub-groups (α = .74–.86). In both countries, ICECAP-A scores were significantly correlated with SWLS, SF-6D and EQ-5D-5L scores for healthy participants and health condition groups (r = .35–.77). Finally, experiencing one of the seven health conditions (compared to being healthy) was significantly associated with lower levels of capability wellbeing in the German and UK samples (construct validity). The German translation of the ICECAP-A yielded valid and reliable data, in both healthy respondents and the seven health condition groups. Further work could be undertaken to develop a German specific value-set for the ICECAP-A.

Background\ud There is a considerable global burden of invasive group B streptococcal (GBS) disease. Vaccines are being developed for use in pregnant women to offer protection to neonates.\ud \ud Objective\ud To estimate the potential impact and cost-effectiveness of maternal immunisation against neonatal and maternal invasive GBS disease in the UK.\ud \ud Methods\ud We developed a decision-tree model encompassing GBS-related events in infants and mothers, following a birth cohort with a time horizon equivalent to average life expectancy (81 years). We parameterised the model using contemporary data from disease surveillance and outcomes in GBS survivors. Costs were taken from NHS sources and research studies. Maternal immunisation in combination with risk-based intrapartum antibiotic prophylaxis (IAP) was compared to the current standard practice of risk-based IAP alone from an NHS and Personal Social Services (health-provider) perspective. We estimated the cases averted and cost per QALY gained through vaccination. One-way sensitivity analysis, scenario analysis and probabilistic sensitivity analysis were performed.\ud \ud Results\ud An effective maternal immunisation programme could substantially reduce the burden of GBS disease. The deterministic analysis estimated the threshold cost-effective price for a GBS vaccine to be £54 per dose at £20,000/QALY (£71 per dose at £30,000/QALY). Results were most sensitive to assumptions on disease incidence, sequelae rate and vaccine efficacy. Probabilistic analysis showed 90.66% of iterations fell under the £30,000 threshold at a vaccine price of £55. Inclusion of modest prevention of stillbirths and/or, preterm births, carer health impacts, maternal GBS deaths and 1.5% discounting improved cost-effectiveness compared to the base case. Lowering vaccine strain coverage made the vaccine less cost-effective. A key limitation is that the properties of the final GBS vaccine are unknown.\ud \ud Conclusions\ud Maternal GBS immunisation is expected to be cost-effective, even at a relatively high vaccine price.

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.

Background It is important that STI screening provision reflects the priorities of young people, as they bear the greatest burden of disease. Such provision has become possible in a wider range of settings but there are constraints due to budget pressures. The objectives of the study were: • To assess how young people prioritise different characteristics of STI screening; • To analyse whether there are differences across socio-demographic groups; • To predict participation rates for different service configurations. Methods Eight qualitative focus groups were used to design a discrete choice experiment (DCE) to analyse the choices made by young people. DCEs are an attribute-based survey method which involve respondents making choices between hypothetical scenarios, comprising two or more alternatives. The DCE included the following service characteristics: waiting times for appointments, waiting times for results, type of consultation, staff attitude, type of screening test, STIs tested for, and setting. The DCE was administered to 2000 young people who were part of an online panel in the UK, with quotas set to ensure inclusion of minority ethnic groups. Results Analyses indicated that all seven service characteristics investigated were statistically significant factors for participants. Feeling that staff were non-judgemental was the most important characteristic to young people. Being tested for all STIs, having a full consultation and getting results quickly were also characteristics identified as important. Further analyses revealed some heterogeneity in priorities by gender, ethnicity and age group. Conclusion This study provides valuable insights into the service characteristics that are seen as the most important by young people. This knowledge will allow those involved in providing and designing services to understand the relative importance of different service characteristics. At a time when sexual health services are facing pressures, such findings can be used to inform service development to ensure that decision-making is informed by young people’s priorities. Disclosure No significant relationships.

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.

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.

Background: The underpinning assumption of pay-for-performance (P4P) systems is that providers respond to financial incentives. However, in the UK, the impact of payment-by-results (PbR), a form of P4P, on care is unclear. The objective of this qualitative case study is to understand the local financial dynamics within a system that financially rewards clinical activities. Methods: Staff who acted as decision-makers in a hospital that implemented a quality improvement initiative—‘The Portsmouth Tonsillitis protocol’—were purposively sampled for semi-structured in-depth interviews in July 2014. The interview included questions about knowledge of the protocol, views on financial incentives and other motivations. Findings: Financial gains to the hospital motivated all the participants. Compared to clinicians, administrators were more concerned about the economic implications of their decisions on the hospital. The attitude of individual clinicians towards receiving monetary reward was unclear but they were unequivocal that professionalism, control over bed spaces and patient care were more important motivators of performance. Conclusion: Hospitals are not single entities with a unitary focus but consist of groups that sometimes have dissenting objectives. PbR may have created healthy competition between hospitals; such competition filtered down to clinical teams who vie for bed spaces and revenue with potentially unintended consequences on the wider productivity of the hospital.

Concept Mapping Methods. This file contains the detailed approach taken in developing the conceptual map. (DOCX 26Â kb)

Background Patients treated for soft tissue sarcoma (STS) require long-term follow-up to detect recurrent or metastatic disease, yet marked differences exist in clinical approaches to the length of follow-up, frequency of consultations and investigations undertaken at follow-up visits. There has been no published work assessing patient expectations or the acceptability of post-treatment follow-up strategies. This study aimed to assess the patient acceptability of different follow-up strategies following curative surgery for soft tissue sarcoma and to investigate the hypothetical levels of recurrence risk at which different follow-up regimes were acceptable. Methods Patients were recruited from the Royal Orthopaedic Hospital in Birmingham. The study used a cross-sectional survey incorporating a best-worst scaling discrete choice experiment to assess patient preferences regarding different aspects of follow-up. Results 132 patients participated (47% response). The nature of investigations undertaken during follow-up was the most important aspect of post-surgical care. Patients typically preferred appointments routinely consisting of clinical examination and chest X-ray, and for follow-up to remain in secondary care rather than general practice. Conclusion Clear protocols for STS patient follow-up can improve consistency and equity of care. In determining the optimum follow-up plan for STS patients from the patient perspective, this study provides valuable information that should be considered alongside the clinical effectiveness of follow-up strategies to maximise patient outcomes and use NHS resources appropriately.

The Carer Experience Scale (CES) is an index measure of the caring experience, focusing on six domains: activities outside caring, support from family and friends, assistance from the government and other organizations, fulfilment from caring, control over caring and getting on with the care recipient. This is an initial study of the construct validity of the CES focusing on validity in a heterogeneous group of carers in the UK.The CES was included in a cross-sectional quality of life survey conducted in a UK city in 2010. The survey included a number of questions about the characteristics of the carer, care recipient, caring situation and motivation for caring. Hypotheses regarding the anticipated associations between these contextual variables and the caring experience were developed and statistically tested.Seven hundred and thirty carers fully completed the CES questionnaire. Associations between variables hypothesised to relate to the caring experience (such as recipient health and intensity of caring) and the CES were largely as expected, providing evidence that the CES captures the caring experience in a valid way. Most hypothesised associations were statistically significant in both carers of older and younger adults.This study provides early encouraging evidence for the construct validity of the CES instrument. Further investigation is required to examine the validity of the CES in specific clinical subgroups and to examine the responsiveness of the CES in detecting changes in the carer's outcomes over time.

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.

Objectives This study aimed to determine quantitatively the attributes of such screening tests that couples placed most value on. Methods A stated preference discrete choice experiment was conducted among a sample of pregnant women and their male partners. One four-level attribute (cost) and three two-level attributes (detection rate, gestation and time to wait for results) were used to generate eight hypothetical pairs of tests. Results A total of 103 participants fully completed the questionnaire (63 women, 40 men). Overall, the sample was most concerned with test cost. However, latent class analysis showed three groups of participants whose concern for attributes differed, with cost, detection rate and delay in receiving results being the most important to each. Willingness to pay calculations showed that participants who were most concerned with detection rate were prepared to pay more than four times the amount than those most cost-sensitive would pay for the ‘best test’ option as compared with the ‘worst test’. Conclusions Overall, couples were sensitive to the price of the screening test, but explicit subgroups are also shown that would pay large amounts for improvements in other attributes, particularly detection rates. This could provide important information to policymakers and practitioners in antenatal care, specifically in relation to the trade-offs made when couples decide about antenatal screening tests. © 2013 John Wiley & Sons, Ltd.

Background ‘Choice’ is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate. Aim In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers’ well‐being. Methods Data were derived from 1100 responses to a postal survey conducted in a British city. Statistical tests of association and multivariable regression modelling were applied to study the factors associated with choice in entering a caring role and the association that choice in entering a caring role had with carers’ well‐being. Results We found that informal care was generally perceived to be a free choice, albeit in most cases, a choice was also constrained by duty, financial or social resources. Having a sense of free choice in entering care was strongly and positively associated with the carer's well‐being. Conclusion The study findings are consistent with a view that enabling individuals to have more choice in their caring roles may be beneficial.

Summary A core feature of the capability approach is that a person's capabilities (what they are able to do and be in their life) can differ from their functionings (what they actually do and are in their life). However, the degree to which capability and functioning differ in practice is unclear. This paper investigates this issue, focusing on capability and functioning differences (CFD) across different aspects of life and different individuals. In the study, the ICECAP‐A capability questionnaire was modified to measure both functionings and capabilities and was completed by U.K.‐based convenience sample of 943 people. Around one third of people reported CFD in at least one area of their life, most commonly in terms of their “achievement.” People were more likely to report CFD when they had a degree‐level education and when they had impaired health. An additional finding was that capability varied more with education whereas functioning varied more with health status. This finding needs further examination, but it suggests that the choice of evaluative space may influence how priorities are set for public spending.

Objective Theory and guidelines advocating the inclusion of informal care in economic evaluation have, in recent years, been accompanied by developments in the methods for capturing the costs and outcomes related to informal care. The objective of this study was to review applied economic evaluations to identify the methods used for, and implications of, including informal care in practice. Methods Searches of key databases were conducted to identify all full economic evaluations incorporating costs or outcomes relating to informal care. Information was extracted by using a standard template from all studies meeting the inclusion criteria. Results Thirty economic evaluations were identified that included informal care. Twenty-five of these studies costed carers' time input and 17 measured outcomes for carers. The reported cost-effectiveness of interventions was altered by including informal care, in some cases changing the key conclusions for health care funding. Conclusions Theory and methods development around informal care are yet to significantly permeate the applied literature; however, the results suggest that some funding priorities may change if they were to do so. The development of 1) a reference case for including informal care; 2) sensitivity analysis for contentious issues; and 3) a statement for the reason for excluding informal care, if this is deemed appropriate, may help to improve the way that informal care is included in economic evaluations in the future.

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.

Attribute generation for discrete choice experiments (DCEs) is often poorly reported, and it is unclear whether this element of research is conducted rigorously. This paper explores issues associated with developing attributes for DCEs and contrasts different qualitative approaches. The paper draws on eight studies, four developed attributes for measures, and four developed attributes for more ad hoc policy questions. Issues that have become apparent through these studies include the following: the theoretical framework for random utility theory and the need for attributes that are neither too close to the latent construct nor too intrinsic to people's personality; the need to think about attribute development as a two-stage process involving conceptual development followed by refinement of language to convey the intended meaning; and the difficulty in resolving tensions inherent in the reductiveness of condensing complex and nuanced qualitative findings into precise terms. The comparison of alternative qualitative approaches suggests that the nature of data collection will depend both on the characteristics of the question (its sensitivity, for example) and the availability of existing qualitative information. An iterative, constant comparative approach to analysis is recommended. Finally, the paper provides a series of recommendations for improving the reporting of this element of DCE studies.

This paper deals with three concerns about the evaluative framework that is currently dominant within health economics. These concerns are: that the evaluative framework is concerned entirely with health; that the evaluative framework has an individualistic focus on patients alone; and that the methods used to estimate 'health' within the current evaluative framework could be improved both in terms of the generation of descriptive systems and in using valuation methods that rely less on people's ability to express their preferences on a cardinal scale. In exploring these issues the Investigating Choice Experiments for Preferences of Older People (ICEPOP) programme has explicitly focused on both the topic of older people and the methods of discrete choice experiments. A capability index has been developed and attributes for an economic measure of end-of-life care are currently being generated, providing the possibility of extending the evaluative framework beyond health alone. A measure of carer's experience and a framework for extending measurement in end-of-life care to loved ones are both also in development, thus extending the evaluative framework beyond the patient alone. Rigorous qualitative methods employing an iterative approach have been developed for use in constructing attributes, and best-worst scaling has been utilized to reduce task complexity and provide insights into heterogeneity. There are a number of avenues for further research in all these areas, but in particular there is need for greater attention to be paid to the theory underlying the evaluative framework within health economics. © The Royal Society of Medicine Press Ltd 2008.

Background Many families rely on formal day care provision, which can be problematic when children are unwell. Attendance in these circumstances may impact on the transmission of infections in both day care and the wider community. Methods Thirty-one semi-structured interviews were conducted to investigate how parents make decisions about nursery care when children are unwell. Topics for discussion included: illness attitudes, current practice during childhood illness and potential nursery policy changes that could affect decision-making. Results A combination of illness perceptions and external factors affected decision-making. Parents: (i) considered the severity of respiratory and non-respiratory symptoms differently, and stated that while most other contagious illnesses required nursery exclusion, coughs/colds did not; (ii) said decisions were not solely based on nursery policy, but on practical challenges such as work absences, financial penalties and alternative care availability; (iii) identified modifiable nursery policy factors that could potentially help parents keep unwell children at home, potentially reducing transmission of infectious illness. Conclusions Decision-making is a complex interaction between the child’s illness, personal circumstance and nursery policy. Improving our understanding of the modifiable aspects of nursery policies and the extent to which these factors affect decision-making could inform the design and implementation of interventions to reduce the transmission of infectious illness and the associated burden on NHS services.

The preferences of informal carers are important to capture for healthcare decision making. This paper discusses how these preferences relate to the economic evaluation of health and care interventions. Three main issues are highlighted. First, there is a need to consider carer impact routinely in economic evaluations. Second, more debate is required around the ethical issues stemming from the inclusion of interdependent preferences in healthcare decision making. Third, there are a number of situations where carer and patient preferences may conflict and practical ways of representing and handling these conflicts would be useful.

This study aimed to determine quantitatively the attributes of such screening tests that couples placed most value on.A stated preference discrete choice experiment was conducted among a sample of pregnant women and their male partners. One four-level attribute (cost) and three two-level attributes (detection rate, gestation and time to wait for results) were used to generate eight hypothetical pairs of tests.A total of 103 participants fully completed the questionnaire (63 women, 40 men). Overall, the sample was most concerned with test cost. However, latent class analysis showed three groups of participants whose concern for attributes differed, with cost, detection rate and delay in receiving results being the most important to each. Willingness to pay calculations showed that participants who were most concerned with detection rate were prepared to pay more than four times the amount than those most cost-sensitive would pay for the 'best test' option as compared with the 'worst test'.Overall, couples were sensitive to the price of the screening test, but explicit subgroups are also shown that would pay large amounts for improvements in other attributes, particularly detection rates. This could provide important information to policymakers and practitioners in antenatal care, specifically in relation to the trade-offs made when couples decide about antenatal screening tests.

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

When going 'beyond the patient', to measure QALYs for unpaid carers, a number of additional methodological considerations and value judgements must be made. While there is no theoretical reason to restrict the measurement of QALYs to patients, decisions have to be made about which carers to consider, what instruments to use and how to aggregate and present QALYs for carers and patients. Current, albeit limited, practice in measuring QALY gains to carers in economic evaluation varies, suggesting that there may be inconsistency in judgements about whether interventions are deemed cost effective.While conventional health-related quality-of-life tools can, in theory, be used to estimate QALYs, there are both theoretical and empirical concerns over the suitability of their use with carers. Measures that take a broader view of health or well-being may be more appropriate. Incorporating QALYs of carers in economic evaluations may have important distributional consequences and, therefore, greater normative discussion over the appropriateness of incorporating these impacts is required. In the longer term, more flexible forms of cost-per-QALY analysis may be required to take account of the broader impacts on carers and the weight these impacts should receive in decision making. © 2011 Adis Data Information BV. All rights reserved.

Background. There is growing interest in incorporating the effects of interventions on unpaid carers in economic evaluation. Current methods focus on using health measures (which neglect important aspects of care-related quality of life) or using carer-specific sum score measures (which are not preference based). Objective. To estimate preference-based index values for a profile measure of the caring experience (the Carer Experience Scale). Methods. Eighteen profiles from the Carer Experience Scale were included in a best-worst scaling experiment. In each profile, respondents were asked to pick the best and worst attribute level from the profiles. The choice task was completed in a postal questionnaire by 162 unpaid carers of older people from 5 geographical locations in the United Kingdom. Logistic regression was used to estimate utility weights for the attribute levels of the Carer Experience Scale. Alternative modeling assumptions were employed to determine the stability of the parameter estimates. These parameter estimates were rescaled so that the profile index values for the Carer Experience Scale lay on a 0-to-100 scale. Results. The results indicate that low levels of "activities" and "getting on" result in larger decrements to utility than other attributes of the caring experience. In general, greater value is placed on differences between the bottom and middle levels of attributes than between the middle and top levels. Alternative modeling approaches had a negligible effect on the index values. Conclusion. The index values reported in this study offer a new preference-based approach to incorporating the effects on carers in economic evaluation, focusing on care (rather than health)-related quality of life. Copyright © 2011 by Society for Medical Decision Making.

Attribute generation for discrete choice experiments (DCEs) is often poorly reported, and it is unclear whether this element of research is conducted rigorously. This paper explores issues associated with developing attributes for DCEs and contrasts different qualitative approaches. The paper draws on eight studies, four developed attributes for measures, and four developed attributes for more ad hoc policy questions. Issues that have become apparent through these studies include the following: the theoretical framework for random utility theory and the need for attributes that are neither too close to the latent construct nor too intrinsic to people's personality; the need to think about attribute development as a two-stage process involving conceptual development followed by refinement of language to convey the intended meaning; and the difficulty in resolving tensions inherent in the reductiveness of condensing complex and nuanced qualitative findings into precise terms. The comparison of alternative qualitative approaches suggests that the nature of data collection will depend both on the characteristics of the question (its sensitivity, for example) and the availability of existing qualitative information. An iterative, constant comparative approach to analysis is recommended. Finally, the paper provides a series of recommendations for improving the reporting of this element of DCE studies.

Background and objective Positive aspects of caring are commonly cited by carers and can potentially mediate carer strain. However, in outcome assessment for carers, it is still common practice to focus on the negative aspects of caring. This study explored the feasibility and validity of including positive items in a commonly used outcome measure—the Caregiver Strain Index (CSI). Methods Five positive items were inserted into the CSI. The resulting ‘CSI+' questionnaire was included in a postal survey of carers in the Netherlands. Feasibility was assessed through completion rates for the CSI+ and individual items. Validity was assessed through tests of the association of the positive items and the CSI+ scores with relevant characteristics of the care (construct validity) and related scales (convergent validity). Factor analysis was carried out the CSI+ scale. Results The addition of the positive items did not noticeably affect the feasibility of the CSI, but did appear to improve the convergent validity of the measure. The multivariable analysis and factor analysis suggests that positive aspects of care could be grouped into ‘coping' factors and ‘attitudinal' factors. Conclusion These findings support the use of positive items in outcome assessment for carers and provide some support for the use of the CSI+ as an instrument for doing this.

Introduction End of life care (EoLC) concerns the needs of both patients and those close to them. Current methods of economic evaluation typically focus on the patient and, only infrequently, the health of the carer. There are strong arguments that impacts on those close to the patient should also be included within economic evaluation. It is therefore important to know who, and how many people may be eligible for inclusion within the evaluation. Aim(s) and method(s) The aim was to examine the scale of decedents9 social networks and explore factors that impact closeness at the end of life (EoL). Hierarchical mapping alongside in-depth interviews was used to examine the networks. Interviews took place with the bereaved, and those with somebody ‘close’ to them receiving EoLC. In total, the networks of 24 decedents were explored. Results The median number of individuals included within the close-person network at EoL was eight. Over 60% of the hierarchical maps included individuals who were not family members and many included those who were not geographically close. Family size and death trajectory appeared to play key roles in determining the size of network at the EoL. Conclusion(s) The hierarchical mapping task was a quick and easy method of establishing the scale of close-person networks. Results suggest that if economists are to assess the full (true) impact of EoLC, assessment will need to extend beyond those providing informal care. This work aligns with the normative stance that evaluation of EoLC should not be limited solely to health outcomes.

Purpose The ICECAP-A and EQ-5D-5L are two index measures appropriate for use in health research. Assessment of content validity allows understanding of whether a measure captures the most relevant and important aspects of a concept. This paper reports a qualitative assessment of the content validity and appropriateness for use of the eq-5D-5L and ICECAP-A measures, using novel methodology. Methods In-depth semi-structured interviews were conducted with research professionals in the UK and Australia. Informants were purposively sampled based on their professional role. Data were analysed in an iterative, thematic and constant comparative manner. A two stage investigation - the comparative direct approach - was developed to address the methodological challenges of the content validity research and allow rigorous assessment. Results Informants viewed the ICECAP-A as an assessment of the broader determinants of quality of life, but lacking in assessment of health-related determinants. The eq-5D-5L was viewed as offering good coverage of health determinants, but as lacking in assessment of these broader determinants. Informants held some concerns about the content or wording of the Self-care, Pain/Discomfort and Anxiety/Depression items (EQ-5D-5L) and the Enjoyment, Achievement and attachment items (ICECAP-A). Conclusion Using rigorous qualitative methodology the results suggest that the ICECAP-A and EQ-5D-5L hold acceptable levels of content validity and are appropriate for use in health research. This work adds expert opinion to the emerging body of research using patients and public to validate these measures.