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Towards the assessment of quality of life in patients with disorders of consciousness

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Abstract

Purpose

To generate foundational knowledge in the creation of a quality-of-life instrument for patients who are clinically diagnosed as being in a vegetative or minimally conscious state but are able to communicate by modulating their brain activity (i.e., behaviourally nonresponsive and covertly aware). The study aimed to identify a short list of key domains that could be used to formulate questions for an instrument that determines their self-reported quality of life.

Methods

A novel two-pronged strategy was employed: (i) a scoping review of quality-of-life instruments created for patient populations sharing some characteristics with patients who are behaviourally nonresponsive and covertly aware was done to compile a set of potentially relevant domains of quality of life; and (ii) a three-round Delphi consensus process with a multidisciplinary panel of experts was done to determine which of the identified domains of quality of life are most important to those who are behaviourally nonresponsive and covertly aware. Five expert groups were recruited for this study including healthcare workers, neuroscientists, bioethicists, quality-of-life methodologists, and patient advocates.

Results

Thirty-five individuals participated in the study with an average response rate of 95% per round. Over the three rounds, experts reached consensus on 34 of 44 domains (42 domains were identified in the scoping review and two new domains were added based on suggestions by experts). 22 domains were rated as being important for inclusion in a quality-of-life instrument and 12 domains were deemed to be of less importance. Participants agreed that domains related to physical pain, communication, and personal relationships were of primary importance. Based on subgroup analyses, there was a high degree of consistency among expert groups.

Conclusions

Quality of life should be a central patient-reported outcome in all patient populations regardless of patients’ ability to communicate. It remains to be determined how covertly aware patients perceive their circumstances and quality of life after suffering a life-altering injury. Nonetheless, it is important that any further dialogue on what constitutes a life worth living should not occur without direct patient input.

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Acknowledgements

We would like to thank the members of the expert panel for lending their time and expertise, and without whom this work would not have been possible. Members of the expert panel included Salman Abbasi (Patient and Family Advisor), Ruth Barclay (University of Manitoba), John Gordon Boyd (Queens University), Linda Bruni (Patient and Family Advisor), Srivas Chennu (University of Kent), Joyce Cramer (Yale University), Damian Cruse (University of Birmingham), Athena Demertzi (University of Liège), David Feeny (McMaster University), Brian Feldman (University of Toronto), Davina Fernández-Espejo (University of Birmingham), Paola Finoia (Cambridge University), Teneille Gofton (Western University), Mackenzie Graham (Oxford University), Jennifer Hawkins (Duke University), Gil Hersch (George Mason University), Terry Howard (Patient and Family Advisor), Guy Kahane (Oxford University), Nadira King (Patient and Family Advisor), Ayse Kuspinar (University of Waterloo), Marcello Massimini (University of Milan), Nancy Mayo (McGill University), Lorina Naci (Trinity College Dublin), Margarita Perez (Patient and Family Advisor), Andrew Peterson (George Mason University), Leonard Rodrigues (Patient and Family Advisor), Keith Sequeira (Western University), Anthony Skelton (Western University), Jeanne Teitelbaum (University of Montreal), Juan Torres (Patient and Family Advisor), Andrea Townson (University of British Columbia), Paul and Jeff Tremblay (Patient and Family Advisor), Alexis Turgeon (Université de Laval), Samuel Wiebe (University of Calgary), and Bryan Young (Western University).

Funding

This project was funded by an operating grant from the Canadian Institutes of Health Research (MOP-133705).

Author information

Authors and Affiliations

  1. Department of Epidemiology and Biostatistics, Western University, London, ON, Canada

    Jasmine Tung, Kathy N. Speechley & Charles Weijer

  2. Children’s Health Research Institute, Lawson Health Research Institute, London, ON, Canada

    Kathy N. Speechley

  3. Department of Pediatrics, Western University, London, ON, Canada

    Kathy N. Speechley

  4. Department of Clinical Neurological Sciences, Western University, London, ON, Canada

    Teneille Gofton

  5. Brain and Mind Institute, Western University, London, ON, Canada

    Laura E. Gonzalez-Lara, Adrian M. Owen & Charles Weijer

  6. Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK

    Mackenzie Graham

  7. School of Psychology, Trinity College Dublin, Dublin, Ireland

    Lorina Naci

  8. Global Brain Health Institute, Trinity College Dublin, Dublin, Ireland

    Lorina Naci

  9. Institute for Philosophy and Public Policy, George Mason University, Fairfax, USA

    Andrew H. Peterson

  10. Rotman Institute of Philosophy, Western University, London, ON, Canada

    Adrian M. Owen & Charles Weijer

Authors
  1. Jasmine Tung
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  2. Kathy N. Speechley
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  3. Teneille Gofton
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  4. Laura E. Gonzalez-Lara
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  5. Mackenzie Graham
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  6. Lorina Naci
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  7. Andrew H. Peterson
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  8. Adrian M. Owen
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  9. Charles Weijer
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Corresponding author

Correspondence to Jasmine Tung.

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Conflict of interest

Charles Weijer receives consulting income from Eli Lilly & Company Canada. The other authors have no competing interests to declare.

Ethical approval

Approval for this study was obtained from the Western University Health Science Research Ethics Board (#108066). Informed consent was obtained from all participants included in this study.

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Tung, J., Speechley, K.N., Gofton, T. et al. Towards the assessment of quality of life in patients with disorders of consciousness. Qual Life Res 29, 1217–1227 (2020). https://doi.org/10.1007/s11136-019-02390-8

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  • DOI: https://doi.org/10.1007/s11136-019-02390-8

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