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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.

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.

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

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

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

The Care Act 2014 gave English local authorities a duty to ‘shape’ social care markets and encouraged them to work co-productively with stakeholders. Grid-group cultural theory is used here to explain how local authorities have undertaken market shaping, based on a four-part typology of rules and relationships. The four types are: procurement (strong rules, weak relationships); managed market (strong rules, strong relationships); open market (weak rules, weak relationships); and partnership (weak rules, strong relationships). Qualitative data from English local authorities show that they are using different types of market shaping in different parts of the care market (e.g. residential vs home care), and shifting types over time. Challenges to the sustainability of the care system (rising demand, funding cuts, workforce shortages) are pulling local authorities towards the two ‘strong rules’ approaches which run against the co-productive thrust of the Care Act. Some local authorities are experimenting with hybrids of the two ‘weak rules’ approaches but the rival cultural biases of different types mean that hybrid approaches risk antagonising providers and further unsettling an unstable market.

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: 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.

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.

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.

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

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: 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.

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: 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 ‘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.

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.

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

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.