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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.

Purpose To identify patterns and problems in completing composite time trade-off (C-TTO) and discrete choice experiment (DCE) exercises for the valuation of the Short Warwick-Edinburgh Mental Well-being Scale (SWEMWBS) to inform the optimisation of a valuation protocol. Methods Fourteen cognitive interviews were conducted in the UK using concurrent and retrospective think-aloud and probing techniques. Each participant completed 8 C-TTO tasks and 8 DCE tasks within a computer-assisted personal interview setting. Verbal information was transcribed verbatim. Axial coding and thematic analysis were used to organise the qualitative data and identify patterns and problems with the completion of tasks. Results While participants found the tasks generally manageable, five broad themes emerged to explain and optimise the response to the tasks. (1) Format and structure: attention to the design of practice examples, instructions, and layout were needed. (2) Items and levels: underlying relationships were discovered across different combinations of levels of SWEMWBS items. (3) Decision heuristics: participants engaged in diverse strategies to assist trade-off decisions. (4) Valuation feasibility: certain states were difficult to imagine, compare and quantify. (5) Valuation outcome: the data quality was affected by participants’ discriminatory ability across states and their time trade-off decisions. Conclusion The interviews contributed insights regarding the robustness of the proposed methods. The application of C-TTO and DCE valuation techniques was practical and suitable for capturing individual attitudes towards different mental well-being scenarios. A modified protocol informed by the results is being tested in a larger sample across the UK.

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.

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.

Financial stress has been proposed as an economic determinant of depression. However, there is little systematic analysis of different dimensions of financial stress and their association with depression. This paper reports a systematic review of 40 observational studies quantifying the relationship between various measures of financial stress and depression outcomes in adults. Most of the reviewed studies show that financial stress is positively associated with depression. A positive association between financial stress and depression is found in both high-income and low-and middle-income countries, but is generally stronger among populations with low income or wealth. In addition to the “social causation” pathway, other pathways such as “psychological stress” and “social selection” can also explain the effects of financial stress on depression. More longitudinal research would be useful to investigate the causal relationship and mechanisms linking different dimensions of financial stress and depression. Furthermore, exploration of effects in subgroups could help target interventions to break the cycle of financial stress and depression.

Carer quality of life is increasingly considered alongside patient quality of life in economic evaluation. Important questions remain about how to value carer and patient quality of life effects alongside one another. In this study, we estimated the relative social value of two conceptualisations of carer quality of life (health-related and care-related) compared to patient quality of life. Relative valuations were estimated using a person trade-off (PTO) study with 990 representative members of the UK public. Participants chose between hypothetical services that improved the quality of life of carers and patients, iterating to a point of indifference. Overall 84% of participants completing the task were willing to trade patient and carer quality of life effects. Relative to a reference point of 1 for patient health-related quality of life, we estimated a social value of 0.74 for carer health-related quality of life effects and 0.69 for carer care-related quality of life effects. In conclusion, public preferences appear to support the inclusion of carer quality of life effects within economic evaluation. The results provide a means to value different carer quality of life outcomes in economic evaluation, where such values are needed and deemed appropriate.

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.

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.

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.

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.

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.

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.

© 2014, Springer International Publishing Switzerland. Purpose: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care.Methods: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied.Results: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers’ and care recipients’ health status and duration of caregiving were negatively associated with caring experiences.Conclusions: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving.

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.

\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

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.

Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people, to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations. © 2008 Elsevier Ltd. All rights reserved.

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.

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.