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How dead is dead? Qualitative findings from participants of combined traditional and lead-time time trade-off valuations

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Abstract

Purpose

The EuroQol Valuation Technology (EQ-VT) uses traditional time trade-off (tTTO) for health states better than dead and lead-time TTO (LT-TTO) for states worse than dead to elicit a value (−1.0 to +1.0) for each health state. In the Canadian EQ-5D-5L Valuation study which used the EQVT platform, we observed an unexpected peak in frequency of “0” values and few negative values, particularly in the range of 0 to −0.5. To better understand this finding, we sought to explore respondents’ thought processes while valuing a health state, and their understanding of the tTTO and LT-TTO exercises.

Methods

Qualitative semi-structured interviews were conducted with EQVT task respondents. Questions focused on valuations of health states as: (a) Same as dead in tTTO, (b) Worse than dead in tTTO but changed to same as dead in LT-TTO, (c) Worse than dead in LT-TTO, and (d) Worse than dead in LT-TTO with trading off all 10 years. Data were analyzed using content and thematic analysis.

Results

Mean age of participants (N = 70) was 40 ± 18.1 years, 60 % female, and 76 % Caucasian. Participants provided similar reasons for valuing a health state same as or worse than dead. Many participants expressed confusion about worse than dead valuations, distinction between same as and worse than dead, and the transition from tTTO to LT-TTO. A few indicated that the addition of 10 years of full health in the LT-TTO influenced their valuations.

Conclusions

The transition from tTTO to LT-TTO in the EQVT was confusing to participants, whereby some health state valuations around this transition appeared to be arbitrary.

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Acknowledgments

We thank the EuroQol Research Foundation and the Valuation Task force of the EuroQol group for their support throughout conducting this study.

Funding

This study was funded by a research grant from the EuroQol Research Foundation. Feng Xie is supported through CIHR New Investigator Award (2012–2017). Jeffrey Johnson is a Senior Health Scholar with Alberta Innovates Health Solutions (2009–2016).

Author information

Authors and Affiliations

  1. School of Public Health, University of Alberta, Edmonton, AB, Canada

    Fatima Al Sayah, Ana Mladenovic & Jeffrey A. Johnson

  2. Centre for Evaluation of Medicines, St. Joseph’s Healthcare, Hamilton, ON, Canada

    Kathryn Gaebel

  3. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada

    Feng Xie

  4. Department of Public Health Sciences, 2-040 Li Ka Shing Centre for Health Research Innovation, University of Alberta, Edmonton, AB, T6G 2E1, Canada

    Jeffrey A. Johnson

Authors
  1. Fatima Al Sayah
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  2. Ana Mladenovic
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  3. Kathryn Gaebel
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  4. Feng Xie
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  5. Jeffrey A. Johnson
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Corresponding author

Correspondence to Jeffrey A. Johnson.

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Conflict of interest

FX and JAJ are members of the EuroQol Group. JAJ is a member of the Board of the EuroQol Research Foundation.

Appendix: Interview guide

Appendix: Interview guide

General questions for all participants:

  1. 1.

    Did you find it hard to imagine the health states shown to you during the tasks you just completed? Why did you (or did you not) have difficulty imagining the health states?

  2. 2.

    What was going through your mind while you were making your choices? (Did you imagine what your life would be like living in the health states or how it would affect your family/friends, etc.)

  3. 3.

    Were you thinking about all the dimensions together or did one or two dimensions drive your decisions? Why?

  4. 4.

    Did you find it difficult to trade off years of life for better quality of life? Why did you (did you not) have difficulty making those trade-offs?

  5. 5.

    Do you believe there is some situation or condition that could be perceived as worse than dead? Can you describe to me a situation that you feel is “worse than dead”?

Specific questions based on participants’ responses:

  • For participants that did not trade any years for any health states other than the very mild ones: The health state seems worse than full health. Why were you not willing to trade off any years of live in order to live in full health?

  • For participants that were willing to trade a few years (0 < n < 10 years) to avoid a 10 year life with the health state: You were willing to trade years of life to avoid living 10 years in the health state. What are you thinking about when you were making your decision?

  • For participants that chose “the same” at 0 years (health state is the same as being dead): When you think Health State A at 0 year is about the same as Health State B at 10 years, did you realize that would mean Health State B is equal to being dead? What about the health state that made you think it is the same as being dead?

  • For participants that choose the WTD option but then did not trade anymore time (final score at 0): You chose Health State A at 0 year instead of living in Health State B for 10 years, indicating that you think Health State B is worse than being dead (show the screenshot below to the participant). Then the screen was changed to attach a 10-year in full health before living in these two health states (show the screenshot below to the participant). After you saw this screen, you chose the Health States A and B are about the same, meaning that Health State B is equal to being dead (your previous answer was that Health State B is worse than being dead). What made you change your response about Health State B?

  • For participants who traded years under the WTD scenario: The health state is so bad in your opinion that you are willing to trade 15 years of a 20 year life to avoid living with the health state? What are you thinking about when you were making your decision?

  • For participants that traded all of the 20 years away: The health state is so bad in your opinion that you are willing to trade all 20 years of life to avoid living with the health state? What are you thinking about when you were making your decision? Would you still be willing to trade off more years, if available, to avoid living in this bad health state?

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Al Sayah, F., Mladenovic, A., Gaebel, K. et al. How dead is dead? Qualitative findings from participants of combined traditional and lead-time time trade-off valuations. Qual Life Res 25, 35–43 (2016). https://doi.org/10.1007/s11136-015-1073-9

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  • DOI: https://doi.org/10.1007/s11136-015-1073-9

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