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Purpose: Normative utility scores represent the health related quality of life of the general population, are of utmost importance in cost-effectiveness studies and should reflect relevant sexes and age groups. The aim of this study was to estimate EQ-5D-5L normative utility scores in a population of Dutch females, stratified by age, and to compare these scores to those of female populations of three other countries., Methods: Dutch women completed the EQ-5D-5L online between January and July 2020. Mean normative utilities were computed using the Dutch EQ-5D-5L value set, stratified by age, tested for differences using the Kruskall-Wallis test, and compared to normative utility scores of female populations elsewhere. Additionally, to support the use of the Dutch EQ-5D-5L data in other settings, normative utility scores were also calculated by applying the value sets of Germany, United Kingdom and USA., Results: Data of 9037 women were analyzed and the weighted mean utility score was 0.911 (SD 0.155, 95% CI 0.908-0.914). The mean normative utility scores differed between age groups, showing lower scores in older females. Compared to other normative utility scores of female populations, Dutch mean utilities were consistently higher except for age groups 18-24 and 25-34. With the three country-specific value sets, new age-specific mean normative utility scores were provided., Conclusion: This study provides mean normative utility scores of a large cohort of Dutch females per age group, which were found to be lower in older age groups. Utility scores calculated with three other value sets were made available., (© 2022. The Author(s).)

The last decade has seen significant developments in UK health policy, with are largely claimed to be evidence based. However, such a characterisation ought, in many cases, to be questioned. Policies can be broadly understood as based primarily on either a logical or empirical case. In the absence of relevant empirical evidence, policymakers understandably appeal to logical cases. Once such evidence is available, however, it can inform policy and enable the logical case to be set aside. Such a linear policy process is not always the reality, and logical cases often continue to guide policy decisions in direct opposition to empirical evidence. In this paper, I discuss two recent examples of this disconnect between logical and empirical cases in UK health policy. The first-organ donation-illustrates an example of a significant policy change being made in opposition to the evidence. I refer to this as the improvidence approach. The second-abortion-provides an example of policymakers not making a change that has extensive supporting data. I refer to this using the more recognisable language of the precautionary approach. Ultimately, I argue that both the improvidence and precautionary approaches are examples of problematic public policy where policymakers provide no explicit justification for going against the evidence., (© 2022. The Author(s).)

This paper provides a series of reflections on making the case to senior leaders for the introduction of clinical ethics support services within a UK hospital Trust at a time when clinical ethics committees are dwindling in the UK. The paper provides key considerations for those building a (business) case for clinical ethics support within hospitals by drawing upon published academic literature, and key reports from governmental and professional bodies. We also include extracts from documents relating to, and annual reports of, existing clinical ethics support within UK hospitals, as well as extracts from our own proposal submitted to the Trust Board. We aim for this paper to support other ethicists and/or health care staff contemplating introducing clinical ethics support into hospitals, to facilitate the process of making the case for clinical ethics support, and to contribute to the key debates in the literature around clinical ethics support. We conclude that there is a real need for investment in clinical ethics in the UK in order to build the evidence base required to support the wider introduction of clinical ethics support into UK hospitals. Furthermore, our perceptions of the purpose of, and perceived needs met through, clinical ethics support needs to shift to one of hospitals investing in their staff. Finally, we raise concerns over the optional nature of clinical ethics support available to practitioners within UK hospitals., (© 2020. The Author(s).)

The 2015 UK Supreme Court judgment in Montgomery v Lanarkshire reinforces the importance of informed consent to medical treatment. This paper suggests that Montgomery recognises the challenge faced by vulnerable individuals in choosing between treatment options and making decisions with appreciation of information about material risks. The judgment endorses a form of weak paternalism to safeguard such persons, which is not disrespectful of the aggregate principles of the Mental Capacity Act 2005. But ethical practice requires professionals to tread carefully between weak and hard paternalism in the context of therapeutic interactions with vulnerable patients, while ensuring their awareness of material risks.

In the United Kingdom the law and medical guidance is supportive of women making choices in childbirth. NICE guidelines are explicit that a competent woman's informed request for MRCS (elective caesarean in the absence of any clinical indications) should be respected. However, in reality pregnant women are routinely denied MRCS. In this paper I consider whether there is sufficient justification for restricting MRCS. The physical and emotive significance of childbirth as an event in a woman's life cannot be understated. It is, therefore, concerning that women are having their wishes ignored, and we must ascertain whether the denial of agency is justifiable. To answer this question I first demonstrate that access to MRCS is a lottery in the UK. Second, I argue that there is nothing unique about pregnancy that displaces the ethical norm of respecting patents' sufficiently autonomous choices. Thus, the starting presumption is that all informed choices regarding MRCS should be respected. To ascertain whether any restriction of MRCS is justifiable the burden of proof must be placed on those who argue that MRCS is ethically impermissible. I argue that the most common justifications in the literature against MRCS are insufficient to displace the presumption in favour of autonomous choice in childbirth. I conclude that MRCS should be available to pregnant women, and we must strive to reduce the lottery in access to choice.

Austerity, by its very nature, imposes constraints by limiting the options for action available to us because certain courses of action are too costly or insufficiently cost effective. In the context of healthcare, the constraints imposed by austerity come in various forms; ranging from the availability of certain treatments being reduced or withdrawn completely, to reductions in staffing that mean healthcare professionals must ration the time they make available to each patient. As austerity has taken hold, across the United Kingdom and Europe, it is important to consider the wider effects of the constraints that it imposes in healthcare. Within this paper, we focus specifically on one theorised effect-moral distress. We differentiate between avoidable and unavoidable ethical challenges within healthcare and argue that austerity creates additional avoidable ethical problems that exacerbate clinicians' moral distress. We suggest that moral resilience is a suitable response to clinician moral distress caused by unavoidable ethical challenges but additional responses are required to address those that are created due to austerity. We encourage clinicians to engage in critical resilience and activism to address problems created by austerity and we highlight the responsibility of institutions to support healthcare professionals in such challenging times.

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

There have been calls for some time for a new approach to public health in the United Kingdom and beyond. This is consequent on the recognition and acceptance that health problems often have a complex and multi-faceted aetiology. At the same time, policies which utilise insights from research in behavioural economics and psychology ('behavioural science') have gained prominence on the political agenda. The relationship between the social determinants of health (SDoH) and behavioural science in health policy has not hitherto been explored. Given the on-going presence of strategies based on findings from behavioural science in policy-making on the political agenda, an examination of this is warranted. This paper begins by looking at the place of the SDoH within public health, before outlining, in brief, the recent drive towards utilising behavioural science to formulate law and public policy. We then examine the relationship between this and the SDoH. We argue that behavioural public health policy is, to a certain extent, blind to the social and other determinants of health. In section three, we examine ways in which such policies may perpetuate and/or exacerbate health inequities and social injustices. We argue that problems in this respect may be compounded by assumptions and practices which are built into some behavioural science methodologies. We also argue that incremental individual gains may not be enough. As such, population-level measures are sometimes necessary. In section four we defend this contention, arguing that an equitable and justifiable public health requires such measures.

Background: Conventionally, models used for health state valuation data have been parametric. Recently, a number of researchers have investigated the use of non-parametric Bayesian methods in this area., Objectives: In this paper, we present a non-parametric Bayesian model to estimate a preference-based index for a five-dimensional health state classification, namely EQ-5D., Methods: A sample of 2997 members of the UK general population valued 43 health states selected from a total of 243 health states defined by the EQ-5D using time trade-off technique. Findings from non-parametric modelling are reported in this paper and compared to previously used parametric estimations. The impact of respondent characteristics on health state valuations is also reported., Results: The non-parametric models were found to be better at predicting scores in populations with different distributions of characteristics than observed in the survey sample. Additionally, non-parametric models were found to be better at allowing for the impact of respondent characteristics to vary by health state. The results show an important age effect with sex having some effect., Conclusion: The non-parametric Bayesian models provide more realistic and better utility estimates from the EQ-5D than previously used parametric models have done. Furthermore, the model is more flexible in estimating the impact of covariates.

Background: No current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent-proxy respondent preferences in completing PBMs in the UK., Methods: A literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11-20 years) were convened to determine patient and proxy preferences., Results: Five PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons' group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons' group nonetheless preferred responding directly., Conclusion: The use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child-parent dyads to respond.

This paper is concerned with exploring the relationship between perceptions of professional identities, interprofessional education (IPE) and collaborative practice. It seeks to introduce the concept of interprofessional responsibility as both a shift in the way in which to conceptualise the professional identity of Health and Social Care (H&SC) staff and as a new set of practices that help to inform the way in which students are prepared for collaborative working. The presented research, undertaken as part of a Ph.D. study, is based upon semi-structured interviews (n = 33) with H&SC staff who were recruited from both the United Kingdom (UK) Health Service and UK universities. Drawing upon thematic analysis of the data, the results of the research identified that previous conceptualisations of professional identity aligned to a whole profession do not relate to the way in which professionals perceive their identities. Senior professionals claimed to be more comfortable with their own professional identity, and with working across professional boundaries, than junior colleagues. Academic staff also identified that much IPE currently taught in universities serves the purpose of box-ticking rather than being delivered in meaningful way. It is proposed that the findings have implications for the way in which IPE is currently taught, and that adoption of the proposed concept of 'interprofessional responsibility' may help address some of the concerns these findings raise.

Purpose: The concept of maximising well-being, as opposed to merely treating mental disorder, is a powerful current theme in the area of mental health. Clearly this emphasises the need for appropriate valid and reliable measures of general well-being. This paper examines the appropriateness of a number of measures in this area and concludes that existing assessment tools fail to address the full range of aspects of personal well-being. This paper therefore presents the psychometric properties, validity and reliability of a new measure of well-being-the BBC Well-being Scale., Methods: A total of 1,940 participants completed the new measure, the Goldberg scales of anxiety and depression, the 'List of Threatening Experiences' life events scale, a modified version of the Response Styles Questionnaire and a modified version of the Internal, Personal and Situational Attributions Questionnaire presented via the internet., Results: Exploratory factor-analysis suggested a three-factor solution including themes of psychological well-being, physical health and well-being and relationships. The total 24-item scale had good internal consistency (α = .935) and correlated significantly with key demographic variables and measures of concurrent validity., Conclusions: The new measure--the BBC Well-being Scale-is recommended for research and clinical purposes.

Objective: To examine the psychometric properties of an Internet version of a children and young person's quality of life measure originally designed as a paper questionnaire., Methods: Participants were 3,440 children aged 10 and 11 years in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors., Results: Exploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains--physical well-being, psychological well-being, autonomy and parents, social support and peers, and school environment. Internal consistency reliability of the five domains was measured using Cronbach's alpha, and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version., Conclusions: These results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version.

Background: The index of capability (ICECAP) was developed using in-depth interviews with 40 older people and comprises five attributes: attachment, security, enjoyment, role and control. This paper explores the construct validity of these five capability attributes., Methods: An interview survey was conducted with individuals aged 65 and over located across the UK. Data were analysed in six categories (socio-demographic variables and general well-being, contact with others, health, nature of the locality and environment, social support and participation) using chi-squared tests (for categorical variables) or one-way analysis of variance (for continuous variables)., Results: About 315 individuals were interviewed (response rate 66%). Relationships were generally as anticipated with, for example: strong relationships between age and capability and well-being and capability, but no relationships between capability and either sex or social class; strong relationships between physical measures of health and role, enjoyment and control, and between mental health measures and attachment and enjoyment., Conclusions: This study provides some early evidence for the construct validity of the ICECAP measure. Where anticipated relationships were not observed this might in part be explained in that the ICECAP index asks about capability, but the factors with which associations were examined were largely and inevitably measures of function.

Introduction: This paper reports on the development of a new measure of health-related quality of life for use among patients with gastro-oesophageal reflux disease (GORD), funded as part of the REFLUX trial. This is a large UK multi centre trial that aims to compare the clinical and cost effectiveness of minimal access surgery with best medical treatment for patients with GORD within the NHS., Method: Potential items were identified via a series of interviews and focus groups carried out with patients who were receiving/had received medical or surgical treatment for GORD. The final measure consisted of 31 items covering 7 categories (Heartburn; Acid reflux; Wind; Eating and swallowing; Bowel movements; Sleep; Work, physical and social activities). The measure produced two outputs: a quality of life score (RQLS) and five Reflux symptom scores. Reliability (internal consistency), criterion validity with the SF-36 and, sensitivity to change in terms of relationship with reported change in prescribed medication were assessed amongst a sample of 794 patients recruited into the trial., Results: The measure was shown to be internally consistent, to show criterion validity with the SF-36 and sensitive to changes in patients use of prescribed medication at baseline and 3 month follow-up., Discussion: The Reflux questionnaire is a new self-administered questionnaire for use amongst patients with GORD. Initial findings suggest that the new measure is valid, reliable, acceptable to respondents and simple to administer in both a clinical and research context.

This paper uses the standard error of measurement (SEM) and the standard error of the difference (S(diff)) in relation to data on individuals with amyotrophic lateral sclerosis (ALS) to calculate the minimum change scores required by statistical criteria for each dimension of the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Data collected from a longitudinal study was used to evaluate the usefulness of SEM and S(diff) criteria and to compare these criteria with an anchor-based approach in determining meaningful change. Questionnaires were completed on two occasions, 3 months apart. 764 questionnaires were returned. Questionnaires included the ALSAQ-40 and dimension specific transition items. The ALSAQ-40 is a disease specific health-related quality of life instrument for use in studies of patients with ALS or other motor neuron diseases. For all dimensions of the ALSAQ-40 the patterns of SEMs were similar over time. The results suggest that, for example, six points change on a 0-100 transformed scoring of the physical mobility dimension may be considered on distributional grounds a minimum meaningful change. The demonstrated consistency of SEMs for the dimensions of the ALSAQ-40 is empirical evidence of the theoretically claimed advantage of this measure of sample independence, and supports use of this distributional approach to calculate meaningful change.

An outcome questionnaire that is patient-centred should encompass the aims, values and treatment effects that are prioritised by individuals, and should enable each individual to provide an unambiguous assessment of change over time. There is little evidence about how well outcome questionnaires perform in this regard. This paper describes how interviews that combined in-depth enquiry and cognitive techniques were used to explore patients' experiences of completing three outcome questionnaires over a 6 month period. The 23 interviewees all had chronic disease and were receiving acupuncture treatment for the first time. Many of the problems uncovered by this study can be ameliorated by attention to questionnaire design. For example, by the provision of at least five response options, by being explicit about including co-morbidity, and by measuring medication change as a separate outcome. The study also highlighted more fundamental conceptual difficulties, such as response shift and the respondent's conflict between scoring external function and internal distress (what they did, vs. what they felt). These issues relate to the co-existence of different perspectives and the impossibility of reducing health status to one 'single truth'. The study concludes that qualitative evaluations have an important role to play in questionnaire design and development and are likely to lead to more modest and realistic appraisals of outcome questionnaire performance.

This paper presents a reading of the transcripts of interviews with NHS Trust Chief Executives. Using a poststructuralist understanding of the interviews, it privileges a reading that (ironically) represents these Chief Executives as heroes. Following the classic hero story line, they leave the civilized order of home and journey into a threatening wilderness where they encounter dangerous and magical things but overcome them all because of their masculine characteristics such as rationality, strength and resourcefulness. One way in which these stories can be understood to have significance is that they (misleadingly but powerfully) portray management as obvious and necessary by evocatively drawing on a myth of ancient origin. The piece concludes with some reflections on the ontological implications of the analysis and reflexive comments on the production of truth as a problem.

Many countries are experimenting with planned (or quasi-) markets to discover if they can efficiently deliver health care in keeping with societal objectives. This paper examines the information requirements of this approach. Information is necessary in order to compare the performance of providers, to support billing, and to monitor access to care. It should be accurate, unambiguous, and resistant to manipulation. We draw on a project to find out how information on hospitalisation could be used in contracting in the British National Health Service. We conclude that the existing British system fails to provide robust measures of how many patients are treated, for what conditions, and with what treatments. We identify some promising remedies, others that are more difficult, and some which may be impossible to implement in any planned market, given the uncertainty of clinical practice.

This paper examines some of the processes which have contributed to the development of a 'total quality' (TQ) approach within British health care. The paper challenges the idea that TQ is part of a redistribution of power within the NHS. Rather it is argued that through the elaboration of consumer-led market identities TQ misrepresents the interests of management and constructs a version of the self which obscures new forms of managerial control. TQ constrains alternative forms of social organisation, local knowledge and the social interests invested in them. An example of a competing set of assumptions is discussed. It is suggested that clinical groups--who are primarily motivated by the principles of professional, collegiate control--seek to free themselves from the constraints of TQ. Thus clinical discourse appropriates a professionally led version of the market and protects the traditional autonomy of professionals whilst seeming to render their interests synergistic with those of management. This casts 'quality', and perhaps even the 'market', as conceptual sites upon which different groups strive to construct and legitimate their own interests. It is concluded that the changes explicitly associated with TQ are not as fundamental as they seem.

This paper considers the use of outcome measures in the British National Health Service (NHS). Measuring outcomes is a major conceptual and practical problem. Many different measures are currently available yet no consensus has been reached on which should be preferred over others, or about which should take priority when they conflict. Some currently used measures are described, the relationship between these measures and the measured activities are discussed, and fundamental problems with both the measures and their use are revealed. It is shown that however assiduous the search, the 'perfect' outcome measure will always remain elusive.