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  • 1. Al-Janabi, Hareth
    et al.
    Coast, Joanna
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.2008In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 67, no 1, p. 111-21Article in journal (Refereed)
    Abstract [en]

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

  • 2. Al-Janabi, Hareth
    et al.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Coast, Joanna
    Development of a self-report measure of capability wellbeing for adults: the ICECAP-A.2012In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 21, no 1, p. 167-76Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The benefits of health and social care are not confined to patient health alone and therefore broader measures of wellbeing may be useful for economic evaluation. This paper reports the development of a simple measure of capability wellbeing for adults (ICECAP-A).

    METHODS: In-depth, informant-led, interviews to identify the attributes of capability wellbeing were conducted with 36 adults in the UK. Eighteen semi-structured, repeat interviews were carried out to develop a capability-based descriptive system for the measure. Informants were purposively selected to ensure variation in socio-economic status, age, sex, ethnicity and health. Data analysis was carried out inductively and iteratively alongside interviews, and findings were used to shape the questions in later interviews.

    RESULTS: Five over-arching attributes of capability wellbeing were identified for the measure: "stability", "attachment", "achievement", "autonomy" and "enjoyment". One item, with four response categories, was developed for each attribute for the ICECAP-A descriptive system.

    CONCLUSIONS: The ICECAP-A capability measure represents a departure from traditional health economics outcome measures, by treating health status as an influence over broader attributes of capability wellbeing. Further work is required to value and validate the attributes and test the sensitivity of the ICECAP-A to healthcare interventions.

  • 3. Araya, Ricardo
    et al.
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Rojas, Graciela
    Fritsch, Rosemarie
    Simon, Greg
    Cost-effectiveness of a primary care treatment program for depression in low-income women in Santiago, Chile.2006In: American Journal of Psychiatry, ISSN 0002-953X, E-ISSN 1535-7228, Vol. 163, no 8, p. 1379-87Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The authors compared the incremental cost-effectiveness of a stepped-care, multicomponent program with usual care for the treatment of depressed women in primary care in Santiago, Chile.

    METHOD: A cost-effectiveness study was conducted of a previous randomized controlled trial involving 240 eligible women with DSM-IV major depression who were selected from a consecutive sample of adult women attending primary care clinics. The patients were randomly allocated to usual care or a multicomponent stepped-care program led by a nonmedical health care worker. Depression-free days and health care costs derived from local sources were assessed after 3 and 6 months. A health service perspective was used in the economic analysis.

    RESULTS: Complete data were determined for 80% of the randomly assigned patients. After we adjusted for initial severity, women receiving the stepped-care program had a mean of 50 additional depression-free days over 6 months relative to patients allocated to usual care. The stepped-care program was marginally more expensive than usual care (an extra 216 Chilean pesos per depression-free day). There was a 90% probability that the incremental cost of obtaining an extra depression-free day with the intervention would not exceed 300 pesos (1.04 US dollars).

    CONCLUSIONS: The stepped-care program was significantly more effective and marginally more expensive than usual care for the treatment of depressed women in primary care. Small investments to improve depression appear to yield larger gains in poorer environments. Simple and inexpensive treatment programs tested in developing countries might provide good study models for developed countries.

  • 4. Chen, Gang
    et al.
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Stevens, Katherine
    Brazier, John
    Huynh, Elisabeth
    Sawyer, Michael
    Roberts, Rachel
    Ratcliffe, Julie
    Assessing the Health-Related Quality of Life of Australian Adolescents: An Empirical Comparison of the Child Health Utility 9D and EQ-5D-Y Instruments2015In: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 18, no 4, p. 432-438Article in journal (Refereed)
    Abstract [en]

    Objectives: To examine the performance of two recently developed preference-based instruments-the Child Health Utility 9D (CHU9D) and the EuroQol five-dimensional questionnaire Youth version (EQ-5D-Y)-in assessing the health related quality of life (HRQOL) of Australian adolescents. Methods: An online survey including the CHU9D and the EQ-5D-Y, self-reported health status, and a series of sociodemographic questions was developed for administration to a community-based sample of adolescents (aged 11-17 years). Individual responses to both instruments were translated into utilities using scoring algorithms derived from the Australian adult general population. Results: A total of 2020 adolescents completed the online survey. The mean +/- SD utilities of the CHU9D and the EQ-5D-Y were very similar (0.82 +/- 0.13 and 0.83 +/- 0.19, respectively), and the intraclass correlation coefficient (0.80) suggested good levels of agreement. Both instruments were able to discriminate according to varying levels of self-reported health status (P < 0.001). Although exhibiting good levels of agreement overall, some wide divergences were apparent at an individual level. Conclusions: The study results are encouraging and illustrate the potential for both the CHU9D and the EQ-5D-Y to be more widely used for measuring and valuing the HRQOL of adolescent populations in Australia and internationally. Generating adolescent-specific scoring algorithms pertaining to each instrument and an empirical comparison of the resulting utilities is a natural next step. More evidence is required from the application of the CHU9D and the EQ-5D-Y in specific patient groups in adolescent health settings to inform the choice of instrument for measuring and valuing the HRQOL for the economic evaluation of adolescent health care treatments and services.

  • 5. Coast, J
    et al.
    Salisbury, C
    de Berker, D
    Noble, A
    Horrocks, S
    Peters, T J
    Flynn, T N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Preferences for aspects of a dermatology consultation.2006In: British Journal of Dermatology, ISSN 0007-0963, E-ISSN 1365-2133, Vol. 155, no 2, p. 387-92Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: General practitioners with special interests (GPSIs) are increasingly being used to provide dermatology services in the U.K. Little is known about U.K. dermatology patient attitudes to proposed variations in secondary care service delivery or the values they attach to aspects of the care they receive.

    OBJECTIVES: To quantify preferences for different attributes of care within dermatology secondary care services.

    METHODS: Attributes of care that are important to dermatology patients were derived using in-depth qualitative interviews with 19 patients at different points in the care pathway. A discrete choice experiment using 'best-worst scaling' was sent by post to 119 patients referred to secondary care dermatology services and suitable for GPSI care who had agreed to participate in research.

    RESULTS: Four attributes were derived from the qualitative work: waiting, expertise, thorough care and convenience. For the discrete choice experiment, 99 patients returned questionnaires, 93 of which contained sufficient data for analysis. All attributes were found to be quantitatively important. The attribute of greatest importance was expertise of the doctor, while waiting time was of least importance. Respondents were willing to wait longer than the current 3 months maximum to receive care that was thorough, 2.1 months to see a team led by an expert and 1.3 months to attend a consultation that is easy to get to.

    CONCLUSIONS: Although the need to reduce outpatient waiting times is a key policy driver behind the expansion of GPSI services, this does not appear to be the most important issue for patients. The thoroughness with which the consultation is provided and the expertise of the clinician seen are higher priorities.

  • 6. Coast, Joanna
    et al.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Natarajan, Lucy
    Sproston, Kerry
    Lewis, Jane
    Louviere, Jordan J
    Peters, Tim J
    Valuing the ICECAP capability index for older people.2008In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 67, no 5, p. 874-82Article in journal (Refereed)
    Abstract [en]

    This paper reports the first application of the capabilities approach to the development and valuation of an instrument for use in the economic evaluation of health and social care interventions. The ICECAP index of capability for older people focuses on quality of life rather than health or other influences on quality of life, and is intended to be used in decision making across health and social care in the UK. The measure draws on previous qualitative work in which five conceptual attributes were developed: attachment, security, role, enjoyment and control. This paper details the innovative use within health economics of further iterative qualitative work in the UK among 19 informants to refine lay terminology for each of the attributes and levels of attributes used in the eventual index. For the first time within quality of life measurement for economic evaluation, a best-worst scaling exercise has been used to estimate general population values (albeit for the population of those aged 65+ years) for the levels of attributes, with values anchored at one for full capability and zero for no capability. Death was assumed to be a state in which there is no capability. The values obtained indicate that attachment is the attribute with greatest impact but all attributes contribute to the total estimation of capability. Values that were estimated are feasible for use in practical applications of the index to measure the impact of health and social care interventions.

  • 7. Coast, Joanna
    et al.
    Peters, Tim J
    Natarajan, Lucy
    Sproston, Kerry
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    An assessment of the construct validity of the descriptive system for the ICECAP capability measure for older people.2008In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 17, no 7, p. 967-76Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Flynn, Terry N
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Valuing citizen and patient preferences in health: recent developments in three types of best-worst scaling.2010In: Expert review of pharmacoeconomics & outcomes research, ISSN 1744-8379, Vol. 10, no 3, p. 259-67Article in journal (Refereed)
    Abstract [en]

    There is increased interest in the use of best-worst scaling (BWS) as a method of preference elicitation in health. However, the method is undergoing rapid development in several fields, making dissemination of new insights challenging. Furthermore, there are two types of BWS that have hitherto received little interest in health, but that are uniquely placed to address certain issues. This article offers an update of the state of play of BWS, presents original research to illustrate new methods of analysis and introduces to health researchers some issues on the research frontier.

  • 9.
    Flynn, Terry N
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Louviere, Jordan J
    Peters, Tim J
    Coast, Joanna
    Best--worst scaling: What it can do for health care research and how to do it.2007In: Journal of Health Economics, ISSN 0167-6296, E-ISSN 1879-1646, Vol. 26, no 1, p. 171-89Article in journal (Refereed)
    Abstract [en]

    Statements like "quality of care is more highly valued than waiting time" can neither be supported nor refuted by comparisons of utility parameters from a traditional discrete choice experiment (DCE). Best--worst scaling can overcome this problem because it asks respondents to perform a different choice task. However, whilst the nature of the best--worst task is generally understood, there are a number of issues relating to the design and analysis of a best--worst choice experiment that require further exposition. This paper illustrates how to aggregate and analyse such data and using a quality of life pilot study demonstrates how richer insights can be drawn by the use of best--worst tasks.

  • 10.
    Flynn, Terry N
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Louviere, Jordan J
    Peters, Tim J
    Coast, Joanna
    Estimating preferences for a dermatology consultation using Best-Worst Scaling: comparison of various methods of analysis.2008In: BMC medical research methodology, ISSN 1471-2288, Vol. 8, p. 76-Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Additional insights into patient preferences can be gained by supplementing discrete choice experiments with best-worst choice tasks. However, there are no empirical studies illustrating the relative advantages of the various methods of analysis within a random utility framework.

    METHODS: Multinomial and weighted least squares regression models were estimated for a discrete choice experiment. The discrete choice experiment incorporated a best-worst study and was conducted in a UK NHS dermatology context. Waiting time, expertise of doctor, convenience of attending and perceived thoroughness of care were varied across 16 hypothetical appointments. Sample level preferences were estimated for all models and differences between patient subgroups were investigated using covariate-adjusted multinomial logistic regression.

    RESULTS: A high level of agreement was observed between results from the paired model (which is theoretically consistent with the 'maxdiff' choice model) and the marginal model (which is only an approximation to it). Adjusting for covariates showed that patients who felt particularly affected by their skin condition during the previous week displayed extreme preference for short/no waiting time and were less concerned about other aspects of the appointment. Higher levels of educational attainment were associated with larger differences in utility between the levels of all attributes, although the attributes per se had the same impact upon choices as those with lower levels of attainment. The study also demonstrated the high levels of agreement between summary analyses using weighted least squares and estimates from multinomial models.

    CONCLUSION: Robust policy-relevant information on preferences can be obtained from discrete choice experiments incorporating best-worst questions with relatively small sample sizes. The separation of the effects due to attribute impact from the position of levels on the latent utility scale is not possible using traditional discrete choice experiments. This separation is important because health policies to change the levels of attributes in health care may be very different from those aiming to change the attribute impact per se. The good approximation of summary analyses to the multinomial model is a useful finding, because weighted least squares choice totals give better insights into the choice model and promote greater familiarity with the preference data.

  • 11.
    Flynn, Terry Nicholas
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Louviere, Jordan J
    Peters, Tim J
    Coast, Joanna
    Using discrete choice experiments to understand preferences for quality of life. Variance-scale heterogeneity matters.2010In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 70, no 12, p. 1957-65Article in journal (Refereed)
    Abstract [en]

    Health services researchers are increasingly using discrete choice experiments (DCEs) to model a latent variable, be it health, health-related quality of life or utility. Unfortunately it is not widely recognised that failure to model variance heterogeneity correctly leads to bias in the point estimates. This paper compares variance heterogeneity latent class models with traditional multinomial logistic (MNL) regression models. Using the ICECAP-O quality of life instrument which was designed to provide a set of preference-based general quality of life tariffs for the UK population aged 65+, it demonstrates that there is both mean and variance heterogeneity in preferences for quality of life, which covariate-adjusted MNL is incapable of separating. Two policy-relevant mean groups were found: one group that particularly disliked impairments to independence was dominated by females living alone (typically widows). Males who live alone (often widowers) did not display a preference for independence, but instead showed a strong aversion to social isolation, as did older people (of either sex) who lived with a spouse. Approximately 6-10% of respondents can be classified into a third group that often misunderstood the task. Having a qualification of any type and higher quality of life was associated with smaller random component variances. This illustrates how better understanding of random utility theory enables richer inferences to be drawn from discrete choice experiments. The methods have relevance for all health studies using discrete choice tasks to make inferences about a latent scale, particular QALY valuation exercises that use DCEs, best-worst scaling and ranking tasks.

  • 12. Grewal, Ini
    et al.
    Lewis, Jane
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Brown, Jackie
    Bond, John
    Coast, Joanna
    Developing attributes for a generic quality of life measure for older people: preferences or capabilities?2006In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 62, no 8, p. 1891-901Article in journal (Refereed)
    Abstract [en]

    Current UK policy with respect to the provision of health and social care for older people suggests that greater integration is required. Economists' attempts to assist resource allocation decisions, however, are very health focused, with concentration on the use of health-related quality of life measures. This paper reports an attempt to determine attributes for a new index clearly focusing on quality of life for older people rather than health or other influences on quality of life. In-depth interviews were conducted with 40 purposively selected informants aged 65 and over in private households to explore their views about what is important to them in terms of quality of life. Data were analysed using Framework qualitative analysis. Initial discussions tended to concentrate upon factors influencing quality of life including activities, relationships, health, wealth and surroundings. Further probing and analysis suggested five conceptual attributes: attachment, role, enjoyment, security and control. The data also suggested that the quality of informants' lives was limited by the loss of ability to pursue these attributes. So, for example, it is not poor health in itself, which reduces quality of life, but the influence of that poor health upon each informant's ability to, say, be independent, that is important. Amartya Sen's work on functioning and capability is particularly pertinent here. Using this work, it is possible to interpret the five conceptual attributes as a set of functionings-important for older people in the UK in the 21st century-but noting that it is the capacity to achieve these functionings that appears to be of importance. This suggests that further development of this measure should focus on an index of capability rather than preference-based utility.

  • 13. Lancsar, Emily
    et al.
    Louviere, Jordan
    Flynn, Terry
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Several methods to investigate relative attribute impact in stated preference experiments.2007In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 64, no 8, p. 1738-53Article in journal (Refereed)
    Abstract [en]

    There is growing use of discrete choice experiments (DCEs) to investigate preferences for products and programs and for the attributes that make up such products and programs. However, a fundamental issue overlooked in the interpretation of many choice experiments is that attribute parameters estimated from DCE response data are confounded with the underlying subjective scale of the utilities, and strictly speaking cannot be interpreted as the relative "weight" or "impact" of the attributes, as is frequently done in the health economics literature. As such, relative attribute impact cannot be compared using attribute parameter size and significance. Instead, to investigate the relative impact of each attribute requires commensurable measurement units; that is, a common, comparable scale. We present and demonstrate empirically a menu of five methods that allow such comparisons: (1) partial log-likelihood analysis; (2) the marginal rate of substitution for non-linear models; (3) Hicksian welfare measures; (4) probability analysis; and (5) best-worst attribute scaling. We discuss the advantages and disadvantages of each method and suggest circumstances in which each is appropriate.

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