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Generating preference-based values for the EQ-5D-Y to support its use in HTA

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Koonal Shah and Oliver Rivero-Arias presented at a NICE Technical Forum on the topic of valuing health in children and adolescents. Their presentation discussed some of the challenges in this area, and provided an overview of recent research undertaken to generate preference-based values for the EQ-5D-Y, the ‘youth’ version of the EQ-5D.

Author(s) and affiliation(s): Koonal Shah, Office of Health Economics Oliver Rivero-Arias, University of Oxford

Event: NICE Technical Forum

Location: National Institute for Health and Care Excellence, London

Date: 29/01/2019

Published in: Healthcare

Generating preference-based values for the EQ-5D-Y to support its use in HTA

  1. 1. Koonal Shah, Office of Health Economics Oliver Rivero-Arias, National Perinatal Epidemiology Unit, Nuffield Department of Population Health, University of Oxford NICE Technical Forum  29 January 2019 Generating preference-based values for the EQ-5D-Y to support its use in HTA
  2. 2. NICE Technical Forum, 29 January 2019 2 Acknowledgements • This presentation reports selected methods and findings from research supported by grants from the EuroQol Research Foundation and the Spanish Department of Health • The views expressed do not necessarily reflect the views of the funders
  3. 3. NICE Technical Forum, 29 January 2019 3 Outline • Introduction to measuring and valuing child health • EQ-5D-Y • Brief primer on QALYs, measurement and valuation • Valuation challenges • Findings from recent EQ-5D-Y valuation research • Suggested points for discussion
  4. 4. NICE Technical Forum, 29 January 2019 4 Measuring and valuing child health • Increasing research and HTA interest in measuring and valuing the health of children and adolescents • Measures available for measuring child health, e.g. PedQL, KIDSCREEN • These measures provide summary scores across dimensions, but are not preference-based • Not suitable for use in the estimation of QALYs • Generic preference-based measures developed specifically for use in younger populations are also now available – HUI2, CHU9D • EQ-5D-Y – ‘youth’ version of the EQ-5D
  5. 5. NICE Technical Forum, 29 January 2019 5 EQ-5D-Y instrument Developed in 2010 for use in children and adolescents aged 8 to 15 years
  6. 6. NICE Technical Forum, 29 January 2019 6 Brief primer on QALYs, description and valuation • Quality-adjusted life years: a measure of health captures both quality of life and length of life • Quality of life is used to ‘weight’ patients’ life years • Quality of life scale is anchored at 1 = full health, 0 = dead • 1 QALY = a year of perfect health Time (Years) Quality of life scale (0-1) 0 1 Health profile of a CF adolescent with current treatment Mild State Moderate State Severe State Transplant State 40
  7. 7. NICE Technical Forum, 29 January 2019 7 Brief primer on QALYs, description and valuation • The ‘quality adjustment’ in QALYs requires two pieces of information: 1. A description of patients’ health (e.g. using self/proxy-reported EQ- 5D-Y health states)… 2. …and the valuation (on a scale anchored at 0 and 1) of those health states
  8. 8. NICE Technical Forum, 29 January 2019 8 For every health state, there is a ‘value’ on a 0-1 anchored scale Obtaining ‘values’ for health states
  9. 9. NICE Technical Forum, 29 January 2019 9 Example of an EQ-5D ‘value set’
  10. 10. NICE Technical Forum, 29 January 2019 10 How do we get the values? • We typically ask members of the general public to complete stated preference ‘choice-based’ exercises • These involve considering a range of different health states, imagining what it would be like to experience them, and indicating how good or bad they are • For decision making, we need a set of ‘values’ that represents the overall view of the relevant population • Preference elicitation techniques: • Rating scale (RS) • Standard gamble (SG) • Time trade-off (TTO) • Discrete choice experiment (DCE)
  11. 11. NICE Technical Forum, 29 January 2019 11 EQ-5D-Y: state of play • >40 language versions available • Use is modest but growing • Demand for use in HTA, but no value sets to support that • Recent research has indicated that regular EQ-5D-3L value sets cannot be used for children and adolescents
  12. 12. NICE Technical Forum, 29 January 2019 12 Valuation challenges • Normative issues (whose preferences should we elicit?) • Perspective issues (whose health should we elicit the preferences for?) • Methods issues (how do we elicit the preferences, and on what basis do we make this choice?) • VAS values lower for EQ-5D-Y than for EQ-5D-3L (Kind et al., 2015) • TTO values higher for EQ-5D-Y (Kreimeier et al., 2015) – possibly due to reluctance to sacrifice life years for children
  13. 13. NICE Technical Forum, 29 January 2019 13 Whose preferences? • Position adopted by decision makers in the UK, US, Netherlands (amongst others): relevant preferences are those of the general public • EuroQol protocol: EQ-5D value sets should be based on the preferences of the general public, not of the subgroup whose health is being evaluated • Reflects fact that HTA is intended to inform the broad allocation of resources across an entire population / health system • Public = taxpayers and potential users of health care • Societal perspective, insurance principle, adaptation arguments
  14. 14. NICE Technical Forum, 29 January 2019 14 Who counts as the public? • The UK is not prescriptive about who constitutes a member of the public, but there seems to be an implicit consensus: • Those who bear the cost of providing health care • Those eligible to vote • These criteria exclude children and adolescents
  15. 15. NICE Technical Forum, 29 January 2019 15 Alternative view • Preferences of children and adolescents are relevant because they are potential patients / users of the health care being evaluated • May be relevant to understand the preferences of children (as patients) – could be relevant in other, non-HTA uses of the instrument (Versteegh and Brouwer, 2016) • Alternatives to conventional techniques now available that may be suitable for eliciting the preferences of younger people
  16. 16. NICE Technical Forum, 29 January 2019 16 15. To put the above principles into practice on matters that affect children and young people’s health and wellbeing, NICE has adopted the following overarching aim: • To involve children and young people, (and the organisations that represent their interests), on matters pertinent to NICE’s work and that affect children and young people’s health and wellbeing. 16. In pursuit of this aim, NICE is committed to: • ensuring that the perspectives of children and young people – including those who share the protected characteristics of the Equality Act 20102 or live in disadvantaged circumstances – are taken into account in relevant areas of NICE’s work • producing guidance and standards on topics covering children and young people’s health and wellbeing, which have been informed and influenced by their views and experiences Extract from NICE Patient and Public Involvement Policy (pp.6-7)
  17. 17. NICE Technical Forum, 29 January 2019 17 Whose health? • If we are to use adult preferences to value child health instruments, whose health should they be valuing? • Their own health? • Their own health, imagining they are a child? • The health of their own child? • The health of an unidentified child? – How old should the child be, given the range of ages covered by different instruments?
  18. 18. NICE Technical Forum, 29 January 2019 18 What approaches have been used to develop value sets of instruments for paediatric populations? Instrument Country Sample Perspective Elicitation method QWB USA Adults Self RS HUI Mark 2 Canada Adults Child perspective SG/RS HUI Mark 3 Canada Adults Self SG/RS 16D Finland Adolescents Self RS 17D Finland Adults Child perspective RS AQoL-6D Australia Adolescents Self TTO AHUM UK Adults Self TTO CHU-9D UK Adults Self SG CHU-9D Australia Adolescents Self DCE EQ-5D-Y USA Adults Child perspective DCE QWB: Quality of Well-Being Scale; HUI: Health Utility Index; 16D: sixteen- dimensional measure of health-related quality of life; 17D: seventeen- dimensional measure of health-related quality of life; AQoL-6D: Assessment of Quality of Life 6-Dimension; CHU-9D: Child Health Utility 9D; AHUM: Adolescent Health Utility Measure; RS: rating scale, SG: standard gamble, TTO: time trade- off; DCE: discrete choice experiment
  19. 19. NICE Technical Forum, 29 January 2019 19 Recent EQ-5D-Y valuation research • Conduct a discrete choice experiment to obtain preferences for EQ-5D-Y health states using a sample of adults. Values obtained on a latent scale (not a QALY scale) Study 1: Latent scale DCE study – adult version Study 3: Anchoring study • In parallel, test a range of methods for anchoring latent scale values at 0 = dead to convert latent scale of DCE values into QALY scale • Not covered in this presentation Study 2: Latent scale DCE study – adolescent version • Replicate study 1 using a sample of adolescents
  20. 20. NICE Technical Forum, 29 January 2019 20 Study 1: Latent Scale DCE Adults • Online discrete choice experiment (DCE) survey • Participants belonging to an online panel: quotas used for gender, age and social grade
  21. 21. NICE Technical Forum, 29 January 2019 21 Study 1: Latent Scale DCE Adults • 1,000 adults (+18) completing the survey from the perspective of a “10-year old child” • We used a Blocked Bayesian efficient design to identify 150 pairs to present to participants • + fixed pair (one health state clearly dominant) • Survey instrument included: consent/screening, self-reported EQ-5D-Y, DCE exercise, debriefing, background questions • Data collection during February-March 2017
  22. 22. NICE Technical Forum, 29 January 2019 22 Study 1: Latent Scale DCE Adults • Discrete choice modelling used to analysis DCE data • multinomial logit, scaled multinomial logit; mixed logit; generalised multinomial logit and latent class • Relative attribute importance of model parameters of EQ-5D-Y levels • Participant engagement with the elicitation task
  23. 23. NICE Technical Forum, 29 January 2019 23 Study 2: Latent Scale DCE Adolescents • Same design of Study 1 • 1,005 adolescents (11-17 years old) completing the survey from their own perspective • Data collection during February-March 2018
  24. 24. NICE Technical Forum, 29 January 2019 24 Selected background characteristics Adolescents (own health) (n=1,005) Adults (child perspective) (n=1,000) Family affluence scale (FAS) Low FAS score 29 (2.9%) - Medium FAS score 456 (45.4%) - High FAS score 519 (51.6%) - Missing values 1 (0.1%) Education Did not continue education - 230 (23.0%) Continued education (no degree) - 315 (31.5%) Continued education (degree) - 455 (45.5%) Experience of serious illness In self - 312 (31.2%) In friends or family - 629 (62.9%) In caring for others - 279 (27.9%) Self-reported health EQ-5D-Y health state 11111 587 (58.4%) 148 (14.8%) Other EQ-5D-Y health states 418 (41.6%) 852 (85.2%) Samples were representative of the UK general population in terms of age, gender, grade and nation
  25. 25. NICE Technical Forum, 29 January 2019 25 Relative attribute importance model parameters of EQ-5D-Y levels Levels Adolescents (own health) Mean (95% CI) Adults (child perspective) Mean (95% CI) Statistically significant differences in preferences? MO2 Some problems 3.7 (2.8 to 4.7) 3.2 (2.3 to 4.1) MO3 Lot of problems 12.9 (11.9 to 13.9) 9.4 (8.3 to 10.5) * SC2 Some problems 3 (2.2 to 3.8) 2.9 (2.1 to 3.6) SC3 Lot of problems 10.2 (9.2 to 11.2) 7.7 (6.7 to 8.6) UA2 Some problems 4.5 (3.8 to 5.3) 4.8 (4 to 5.5) UA3 Lot of problems 12.1 (11.2 to 13.1) 11.6 (10.7 to 12.5) PD2 Some pain 7.5 (6.5 to 8.4) 8.8 (7.9 to 9.7) PD3 Lot of pain 21.1 (19.6 to 22.7) 24 (22.2 to 25.7) * AD2 Bit worried 5.2 (4.3 to 6) 7.4 (6.5 to 8.4) * AD3 Very worried 19.7 (18.1 to 21.3) 20.3 (18.7 to 21.9) * MO: Mobility; SC: Self-care; UA: Usual activities; PD: Pain/Discomfort; AD: Worried, sad or unhappy Red figures indicate three parameters with largest contributions
  26. 26. NICE Technical Forum, 29 January 2019 26 Participant engagement with DCE State 11122 vs 22233 Adolescents Adults Proportion selecting state 11122 88.46% 89.5% Adults (child perspective)Adolescents
  27. 27. NICE Technical Forum, 29 January 2019 27 Debriefing questions (freq.,%) Adolescents Adults Found the tasks difficult: Strongly disagree 208 (20.70%) 217 (21.70%) Disagree 307 (30.55%) 290 (29.00%) Neither agree nor disagree 224 (22.29%) 226 (22.60%) Agree 226 (22.49%) 224 (22.40%) Strongly agree 40 (3.98%) 43 (4.30%) Found difficult to imagine the health problems described Strongly disagree 105 (10.45%) 185 (18.50%) Disagree 248 (24.68%) 329 (32.90%) Neither agree nor disagree 213 (21.19%) 209 (20.90%) Agree 369 (36.72%) 206 (20.60%) Strongly agree 70 (6.97%) 71 (7.10%)
  28. 28. NICE Technical Forum, 29 January 2019 28 • DCE did not include dead or a duration attribute, so values are on a ‘latent’ (or undefined) scale • Further info needed to rescale latent scale values so that they are anchored at 0 and 1, as required for QALY calculations • Which anchoring method should be used? Possible criteria: • Feasibility • Acceptability to decision makers • Potential for administration online • Theoretical and empirical coherence with the preference data to be anchored • Theoretical and empirical consistency with adult valuations in use in HTA Need for anchoring
  29. 29. NICE Technical Forum, 29 January 2019 29 Some discussion points • Which perspective should be employed? • Is the relevant and realistic to use adolescent preferences? • How important is it that the methods used for child health health valuation are commensurate with those used for adult health valuation? • Which stakeholders should feed into these decisions?
  30. 30. NICE Technical Forum, 29 January 2019 30 To enquire about additional information and analyses, please contact Koonal Shah at kshah@ohe.org To keep up with the latest news and research, subscribe to our blog, OHE News Follow us on Twitter @OHENews, LinkedIn and SlideShare Office of Health Economics (OHE) Southside, 7th Floor 105 Victoria Street London SW1E 6QT United Kingdom +44 20 7747 8850 www.ohe.org OHE’s publications may be downloaded free of charge from our website. Thank you for listening

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