Towards the assessment of quality of life in patients with disorders of consciousness
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.
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.
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.
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.
KeywordsQuality of Life Brain injury Disorders of consciousness Communication disorder Delphi method Bioethics
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).
This project was funded by an operating grant from the Canadian Institutes of Health Research (MOP-133705).
Compliance with ethical standards
Conflict of interest
Charles Weijer receives consulting income from Eli Lilly & Company Canada. The other authors have no competing interests to declare.
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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