Through Their Eyes: Defining 'good life' in dementia for health economics and outcomes research.

Despite progress in involving people living with dementia in health research, disparities remain, particularly in the field of health economics and outcomes research, where excessive reliance on proxy reports from care partners or healthcare professionals persists even when people are capable of self-reporting, leading to inequitable inclusion. This study aimed to understand the concept of a 'good life' from the perspectives of people living with dementia and examine how well current preference-based outcome measures used in health economics and outcomes research capture these perspectives. Twenty-three community-dwelling people with mild to moderate dementia in Ireland participated in in-depth interviews (September 2022-February 2023).

The Influence of Recall and Timing of Assessment on the Estimation of Quality-Adjusted Life-Years When Health Fluctuates Recurrently.

Objectives: When health fluctuates recurrently, estimating quality of life (QOL) is challenging, risking over-/underestimation due to measures' recall periods and timing. To inform how/when to capture QOL, we compared responses using different recall periods and assessment timings.

Methods: For one 3-week chemotherapy cycle, cancer patients were randomly assigned to complete EQ-5D-5L or SF-12v2 (daily with a daily recall, weekly with a weekly recall, and at 3 weeks with a 3-week recall); a third group completed SF-12v2 daily with a 3-week recall.

Preparing for responsive management versus preparing for renal dialysis in multimorbid older people with advanced chronic kidney disease (Prepare for Kidney Care): Study protocol for a randomised controlled trial.

Background: Chronic kidney disease (CKD) prevalence is steadily increasing, in part due to increased multimorbidity in our aging global population. When progression to kidney failure cannot be avoided, people need unbiased information to inform decisions about whether to start dialysis, if or when indicated, or continue with holistic person-centred care without dialysis (conservative kidney management). Comparisons suggest that while there may be some survival benefit from dialysis over conservative kidney management, in people aged 80 years and over, or with multiple health problems or frailty, this may be at the expense of quality of life, hospitalisations, symptom burden and preferred place of death.

A choice experiment of older patients' preferences for kidney failure treatments.

Most older people with kidney failure choose between treatment with dialysis or conservative kidney management. The preferences underlying these decisions are poorly understood. Here, we performed a choice experiment, informed by qualitative research, to examine preferences for the characteristics of dialysis and conservative management among over-65-year-olds with eGFR of 20 mls or under/min/1.

The development of a capability wellbeing measure in economic evaluation for children and young people aged 11-15.

The capability approach provides a broad evaluative space for making funding decisions for health and care interventions, with capability wellbeing as the outcome of value. A range of capability measures have been developed for the economic evaluation of health and care interventions for adults. However, such measures have not been previously developed for children and young people for this purpose and may be valuable.

A more equitable approach to economic evaluation: Directly developing conceptual capability wellbeing attributes for Tanzania and Malawi.

Capability wellbeing can potentially provide a holistic outcome for health economic evaluation and the capability approach seems promising for African countries. As yet there is no work that has explored the evaluative space needed for health and care decision making at the whole population level and procedures that merely translate existing measures developed in the global north to contexts in the global south risk embedding structural inequalities. This work seeks to elicit the concepts within the capability wellbeing evaluative space for general adult populations in Tanzania and Malawi.

A socially interdependent choice framework for social influences in healthcare decision-making: a study protocol.

Objectives: Current choice models in healthcare (and beyond) can provide suboptimal predictions of healthcare users' decisions. One reason for such inaccuracy is that standard microeconomic theory assumes that decisions of healthcare users are made in a social vacuum. Healthcare choices, however, can in fact be (entirely) socially determined.

Key Insights into Developing Qualitative Concept Elicitation Work for Outcome Measures with Children and Young People.

Qualitative concept elicitation can develop meaningful patient-reported outcome measures for children and young people; however, the methods used for concept elicitation are often underreported for this population. This paper provides in-depth insight into the methods used for concept elicitation with children and young people, with a focus on key stages of concept elicitation that are challenging or unique to doing this research with children. Drawing on our experiences of developing wellbeing measures for children and young people aged 6-15 years, we detail the processes followed in our qualitative concept elicitation work, covering issues related to sampling and recruitment, encouraging informed assent and freedom over children and young people's involvement in concept elicitation, and the use of creative and participatory methods to develop measure items.

Is well-becoming important for children and young people? Evidence from in-depth interviews with children and young people and their parents.

Purpose: This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people's future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people.

Making recommendations to subsidize new health technologies in Australia: A qualitative study of decision-makers' perspectives on committee processes.

Objectives: To explore experiences of, and perspectives on, health technology assessment (HTA) processes used to produce recommendations about subsidizing new medicines, and medical technologies in Australia, from the perspectives of those experienced in these processes.

Methods: Semi-structured interviews with a diverse group of 18 informants currently or previously members of the Pharmaceutical Benefits Advisory Committee (PBAC) or the Medical Services Advisory Committee (MSAC). Participants were interviewed September 2021-February 2022.

Systematic Review of the Relative Social Value of Child and Adult Health.

Objectives: We aimed to synthesise knowledge on the relative social value of child and adult health.

Methods: Quantitative and qualitative studies that evaluated the willingness of the public to prioritise treatments for children over adults were included. A search to September 2023 was undertaken.

Expanding health technology assessment towards broader value: Ireland as a case study.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective.

Views and Perceptions of People Aged 55+ on the Vaccination Programme for Older Adults in the UK: A Qualitative Study.

Vaccination reduces the risks related to infectious disease, especially among more vulnerable groups, such as older adults. The vaccines available to older adults in the UK through the government-funded programme currently include influenza, pneumococcal, shingles and COVID-19 vaccines. The purpose of the programme is disease prevention and improving wellbeing among the ageing population.

What does a "good life" mean for people living with dementia? A protocol for a think-aloud study informing the value of care.

Introduction: Economic evaluation currently focuses almost exclusively on the maximization of health, using the Quality-Adjusted Life-Year (QALY) framework with instruments such as the EQ-5D, with a limited number of health-focused dimensions providing the assessment of health benefit. This evaluative framework is likely to be insufficient for setting priorities in dementia care because of its exclusive concern with health. Data are also often collected from the perspective of a proxy, limiting the voice of those living with dementia in decision-making.

A think-aloud study of the feasibility of patients with end-stage organ failure completing the ICECAP-SCM.

Background: The ICECAP-Supportive Care Measure (SCM) is a self-complete measure developed to inform economic decision making at the end-of-life. Previous research has demonstrated its feasibility in hospice and nursing home settings. This is the first study of its use with patients on the organ failure trajectory.

Estimating loss in capability wellbeing in the first year of the COVID-19 pandemic: a cross-sectional study of the general adult population in the UK, Australia and the Netherlands.

Objectives: To estimate capability wellbeing lost from the general adult populations in the UK, Australia and the Netherlands in the first year of the COVID-19 pandemic and the associated social restrictions, including lockdowns.

Design: Cross-sectional with recalled timepoints.

Setting: Online panels in the UK, Australia and the Netherlands conducted in February 2021 (data collected 26 January-2 March 2021).

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.

Background: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2.

Comparison of capability and health-related quality of life instruments in capturing aspects of mental well-being in people with schizophrenia and depression.

Background: There is increasing evidence that assessing outcomes in terms of capability provides information beyond that of health-related quality of life (HRQoL) for outcome evaluation in mental health research and clinical practice.

Aims: To assess similarities and differences in the measurement properties of the ICECAP-A capability measure and Oxford Capabilities Questionnaire for Mental Health (OxCAP-MH) in people with schizophrenia experiencing depression, and compare these measurement properties with those of (a) the EuroQol EQ-5D-5L and EuroQol Visual Analogue Scale (EQ-VAS) and (b) mental health-specific (disease-specific) measures.

Method: Using data for 100 patients from the UK, measurement properties were compared using correlation analyses, Bland-Altman plots and exploratory factor analysis.

Preference Elicitation Techniques Used in Valuing Children's Health-Related Quality-of-Life: A Systematic Review.

Background And Objectives: Valuing children's health states for use in economic evaluations is globally relevant and is of particular relevance in jurisdictions where a cost-utility analysis is the preferred form of analysis for decision making. Despite this, the challenges with valuing child health mean that there are many remaining questions for debate about the approach to elicitation of values. The aim of this paper was to identify and describe the methods used to value children's health states and the specific issues that arise in the use of these methods.

Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses.

Background: It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses.

Objective: We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period ('health today', 'past week' and 'past 4 weeks') and timing of assessment influence the way that patients complete these questionnaires.

Measurement Instruments of Productivity Loss of Paid and Unpaid Work: A Systematic Review and Assessment of Suitability for Health Economic Evaluations From a Societal Perspective.

Objectives: This study aimed (1) to perform a systematic literature review of instruments for measuring productivity loss of paid and unpaid work and (2) to assess the suitability (in terms of identification, measurement, and valuation) of these instruments for use in health economic evaluations from a societal perspective.

Methods: Articles published from 2018 were sourced from PubMed/Medline, PsycInfo, Embase, and Econlit. Using 2 separate search strategies, eligible economic evaluations and validation studies were selected and unique measurement instruments identified.

Challenges in developing capability measures for children and young people for use in the economic evaluation of health and care interventions.

Methods for measuring outcomes suitable for economic evaluations of health and care interventions have primarily focused on adults. The validity of such methods for children and young people is questionable in areas including the outcome domains measured and how they are measured and valued, with most existing measures narrowly focusing on health. Novel methods for assessing benefits beyond health by focusing on a person's capability have also concentrated on adults to date.

Measuring capability wellbeing in adults at different stages of life for use in economic evaluation of health and care interventions: a qualitative investigation in people requiring kidney care.

Purpose: Capability wellbeing measures, such as the ICECAP measures, have been proposed for use in economic evaluations to capture broader outcomes of health and care interventions. The ICECAP measures have been developed to reflect capabilities at different stages of life. Some patient groups include patients of different ages and at different stages of life, so it is not always apparent which ICECAP measure is most relevant.

"It is not a scientific number it is just a feeling": Populating a multi-dimensional end-of-life decision framework using deliberative methods.

The capability approach is potentially valuable for economic evaluation at the end of life because of its conceptualization of wellbeing as freedom and the potential for capturing outcomes for those at end of life and those close to persons at the end of life. For decision making, however, this information needs to be integrated into current evaluation paradigms. This research explored weights for an integrated economic evaluation framework using a deliberative approach.