Understanding UK public views on normative decisions made to value health-related quality of life in children: A qualitative study.

Developing methodology for measuring and valuing child health-related quality of life (HRQoL) is a priority for health technology agencies. One aspect of this is normative decisions that are made in child HRQoL valuation. This qualitative study aimed to better understand adult public opinion on the normative questions of whose preferences to elicit (adults, children, or both) and from which perspective (who should be imagined living in impaired health), when valuing child HRQoL. Opinions of the adult UK public (N = 32) were solicited using online semi-structured focus groups, featuring a breadth of age, sex, ethnicities, and responsibility for children under 18 years. Participants were provided with bespoke informational material on health state valuation and were probed for their views. Arguments for and against different positions were discussed. Data was analysed using framework analysis. Participants demonstrated near-to-universal agreement that children should be involved in valuation in some form, yet this should differ depending on age or maturity. There was strong support for approaches combining involvement from children and adults (e.g., their parents), especially for younger children. There was little intuitive support for the 'taxpayer argument' for asking taxpaying adults. In the context of greater involvement of children in valuation, most participants supported using an 'own' perspective. Most participants thought that valuation study participants should know the exercise is about valuing child health states for ethical reasons. Informed views from the UK public on who should be asked and with what perspective when valuing child HRQoL appear to differ from normative positions previously advocated by some health economists, such as prioritising the preferences of taxpaying adults. In contrast, the results suggest including adults and children in valuation, with the proviso that the children are of an appropriate age and level of maturity, and that an own perspective is used wherever possible.

Valuing child and adolescent health: a qualitative study on different perspectives and priorities taken by the adult general public.

BACKGROUND: Quantitative health preference research has shown that different "perspectives", defined here as who is imagined to be experiencing particular health states, impact stated preferences. This qualitative project aimed to elucidate this phenomenon, within the context of adults' valuation of child and adolescent health states. METHODS: Six focus groups with 30 members of the UK adult public were conducted between December 2019 and February 2020 and analysed using framework analysis. Each focus group had two stages. First, participants individually completed time trade-off tasks and a pairwise task (mirroring a discrete choice experiment without duration) for two EQ-5D-Y health states, assuming a series of perspectives: (a) themselves at current age; (b) another adult; (c) 10-year old child; (d) themselves as a 10-year old child. Second, a semi-structured discussion explored their responses. RESULTS: Participants' views were often heterogeneous, with some common themes. Qualitatively, participants expressed a different willingness to trade-off life years for a 10-year old child versus themselves or another adult, and this differed by the health profile and child imagined. The same health states were often viewed as having a different impact on utility for a 10-year old child than adults. Imagining a 10-year old child is difficult and there is variation in who is imagined. Participants found answering based on their own-adult perspective most acceptable. There were no strong preferences for prioritising child health over working-age adults' health. CONCLUSIONS: If an adult sample is used to value child- and adolescent-specific health states it is important to consider the perspective employed. Members of the adult public provide different responses when different perspectives are used due to differences in the perceived impact of the same health states. If adults are asked to imagine a child, we recommend that sampling is representative for parental status, since this can affect preferences.

Care Starts at Home: Emotional State and Appeals to Altruism may Reduce Demand for Overused Health Services in the UK.

BACKGROUND: Overuse of unnecessary services, screening tests, and treatments is an ongoing problem for national health care systems. Overuse is at least partly driven by patient demand. PURPOSE: This study examined whether altering patients' emotional state and appealing to patient altruism would reduce demand for three commonly overused UK health services. METHODS: In an online experiment, 1,267 UK volunteers were randomized to anxiety, compassion, or neutral conditions before viewing three overuse vignettes. In each vignette, use of the health service was recommended against by the doctor and participants were further randomized to one of three altruism frames, emphasizing the impact of overuse on the self, the self and others locally, or the self and others nationally. Participants rated the likelihood that they would pursue the health service and, assuming that they did not, how long they would be willing-to-wait for it. RESULTS: Altruism frame had a small effect on intentions to use the health service. Those in the local or national (vs. self) frame were 4.7 and 6.1 percentage points, respectively, less likely to ask for the service. Emotion induction had no direct effect on outcomes. However, self-reporting higher levels of anxiety or compassion post-induction was associated with a small, greater likelihood in intentions to ask for the health service or willingness-to-wait, respectively. No interactions between frame and emotion were observed. CONCLUSIONS: As a low-cost initiative, emphasizing the benefits to the self and local or national communities could be embedded in appeals designed to appropriately reduce health care overuse in the UK.

Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol.

INTRODUCTION: Preference-based measures (PBMs) of health-related quality of life (HRQoL) are used to generate quality-adjusted life years, which are necessary for cost-effectiveness evaluations of health interventions via cost-utility analysis. These measures of health can be generic (ie, pandiagnostic) or condition specific. No condition-specific PBM of HRQoL in Duchenne muscular dystrophy (DMD) exists, yet there are concerns that standard generic measures lack the specificity to assess aspects of HRQoL that are especially important to people with DMD. This study has been designed to produce a condition-specific PBM of HRQoL in DMD. METHODS AND ANALYSIS: This mixed-methods study proceeds through three stages. In the first stage (concept elicitation), semistructured interviews will be conducted with boys and men diagnosed with DMD, and analysed with framework to produce a draft health state descriptive system for HRQoL in DMD. In the second stage (refining the descriptive system), patients, clinicians and primary caregivers of people with DMD will assess the face validity of the descriptive system. This will be followed by a quantitative survey on a larger sample of patients, which will be analysed with psychometric analyses to produce a refined descriptive system. In the third stage (valuation and econometric modelling), an online discrete choice experiment with duration will be administered to a general public sample to generate utility values for the new measure. ETHICS AND DISSEMINATION: This study has received ethical approval from the National Health Service (REC reference: 18/SW/0055). The primary output of this research will be a condition-specific PBM (or 'bolt-on' to an existing generic PBM) in people with DMD and an associated value set. Results will be disseminated through international conferences and open-access journals.

Equal access for equal need: Eliciting public preferences for access to health treatment by employment status.

The National Health Service in the UK is set up under the principle of "equal access for equal need", where those with identical medical needs should be given equal priority in receiving health care. However, non-medical needs may also be relevant in health care decision-making. This paper considers how members of the general public value access to a health service given equal medical needs, where some service users have additional non-medical needs. There are three primary research questions. First, are public preferences regarding access to a health care service symmetric and inequality averse? Second, are public preferences asymmetric across different needs groups? And third, which individual characteristics of respondents are predictive of different public preferences in this domain? An online survey of the UK general public was conducted in January 2017 using binary choice questions. The hypothetical scenarios involved allocating extra resources from a social perspective, to reduce the waiting time to access a mental health service for the unemployed, for the employed, or for both groups. Based on a valid sample of 662 respondents, the study found that the three main preference categories were: inequality averse and symmetric, inequality averse and asymmetric in favour of the unemployed, and inequality seeking and asymmetric in favour of the unemployed, with the first group being the largest. Respondents' current labour market status was found to explain their preferences so that those who were currently job-seeking were more likely to demonstrate preferences that favoured the unemployed, and those who were currently unemployed were less likely to demonstrate asymmetric preferences that favoured the employed. The implications from these findings are that health policies in the UK that support equal access for equal medical need are likely to be received most favourably, yet a non-trivial minority may support policies favouring those with other, non-medical needs.

The effects of exposure to images of others' suffering and vulnerability on altruistic, trust-based, and reciprocated economic decision-making.

In this paper we explored the effects of exposure to images of the suffering and vulnerability of others on altruistic, trust-based, and reciprocated incentivized economic decisions, accounting for differences in participants' dispositional empathy and reported in-group trust for their recipient(s). This was done using a pictorial priming task, framed as a memory test, and a triadic economic game design. Using the largest experimental sample to date to explore this issue, our integrated analysis of two online experiments (total N = 519), found statistically consistent evidence that exposure to images of suffering and vulnerability (vs. neutral images) increased altruistic in-group giving as measured by the "triple dictator game", and that the manipulation was significantly more effective in those who reported lower trust for their recipients. The experimental manipulation also significantly increased altruistic giving in the standard "dictator game" and trust-based giving in the "investment game", but only in those who were lower in in-group trust and also high in affective or cognitive empathy. Complementary qualitative evidence revealed the strongest motivations associated with increased giving in the experimental condition were greater assumed reciprocation and a lower aversion to risk. However, no consistent effects of the experimental manipulation on participants' reciprocated decisions were observed. These findings suggest that, as well as altruistic decision-making in the "triple dictator game", collaboratively witnessing the suffering of others may heighten trust-based in-group giving in the "investment game" for some people, but the effects are heterogeneous and sensitive to context.

Heart versus head: Differential bodily feedback causally alters economic decision-making.

Metaphorically, altruistic acts, such as monetary donations, are said to be driven by the heart, whereas sound financial investments are guided by reason, embodied by the head. In a unique experiment, we tested the effects of these bodily metaphors using biofeedback and an incentivized economic decision-making paradigm. Participants played a repeated investment game with a simulated partner, alternating between tactical investor and altruistic investee. When making decisions, participants received counterbalanced visual feedback from their own or a simulated partner's heart or head, as well as no feedback. As investor, participants transferred a greater proportion of their endowments when exposed to visual feedback from their own head than to feedback from their own heart or no feedback at all. These effects were not observed when the source of the feedback was the simulated partner. As investee, heart feedback predicted greater altruistic returns than head or no feedback, but this effect did not differ based on source (own vs partner). Consistent with a dual-process framework, we suggest that people may be encouraged to invest more or be more altruistic when receiving bodily feedback from conceptually diametric sources.