Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data

Collaborators, Affiliations

Collaborators

Curing Coma Campaign Collaborators:
Venkatesh Aiyagari, Yama Akbari, Fawaz Al-Mufti, Sheila Alexander, Anne Alexandrov, Ayham Alkhachroum, Moshagan Amiri, Brian Appavu, Meron Awraris Gebre, Mary Kay Bader, Neeraj Badjiata, Ram Balu, Megan Barra, Rachel Beekman, Ettore Beghi, Kathleen Bell, Erta Beqiri, Tracey Berlin, Thomas Bleck, Yelena Bodien, Varina Boerwinkle, Melanie Boly, Alexandra Bonnel, Emery Brown, Eder Caceres, Elizabeth Carroll, Emilio Cediel, Sherry Chou, Giuseppe Citerio, Jan Claassen, Chad Condie, Katie Cosmas, Claire Creutzfeldt, Neha Dangayach, Michael DeGeorgia, Caroline Der-Nigoghossian, Masoom Desai, Michael Diringer, James Dullaway, Brian Edlow, Ari Ercole, Anna Estraneo, Guido Falcone, Salia Farrokh, Simona Ferioli, Davinia Fernandez-Espejo, Ericka Fink, Joseph Fins, Brandon Foreman, Jennifer Frontera, Rishi Ganesan, Ahmeneh Ghavam, Joseph Giacino, Christie Gibbons, Emily Gilmore, Olivia Gosseries, Theresa Green, David Greer, Mary Guanci, Cecil Hahn, Ryan Hakimi, Flora Hammond, Daniel Hanley, Jed Hartings, Ahmed Hassan, Raimund Helbok, Claude Hemphill, H E Hinson, Karen Hirsch, Sarah Hocker, Peter Hu, Xiao Hu, Theresa Human, David Hwang, Judy Illes, Matthew Jaffa, Michael L James, Anna Janas, Morgan Jones, Emanuela Keller, Maggie Keogh, Jenn Kim, Keri Kim, Hannah Kirsch, Matt Kirschen, Nerissa Ko, Daniel Kondziella, Natalie Kreitzer, Julie Kromm, Abhay Kumar, Pedro Kurtz, Steven Laureys, Thomas Lawson, Nicolas Lejeune, Ariane Lewis, John Liang, Geoffrey Ling, Sarah Livesay, Andrea Luppi, Lori Madden, Craig Maddux, Dea Mahanes, Shraddha Mainali, Nelson Maldonado, Rennan Martins Ribeiro, Marcello Massimini, Stephan Mayer, Victoria McCredie, Molly McNett, Jorge Mejia-Mantilla, David Menon, Geert Meyfroidt, Julio Mijangos, Dick Moberg, Asma Moheet, Erika Molteni, Martin Monti, Chris Morrison, Susanne Muehlschlegel, Brooke Murtaugh, Lionel Naccache, Masao Nagayama, Emerson Nairon, Girija Natarajan, Virginia Newcombe, Niklas Nielsen, Naomi Niznick, Filipa Noronha-Falcão, Paul Nyquist, DaiWai Olson, Marwan Othman, Adrian Owen, Llewellyn Padayachy, Soojin Park, Melissa Pergakis, Len Polizzotto, Nader Pouratian, Marilyn Price Spivack, Lara Prisco, Javier Provencio, Louis Puybasset, Chethan Rao, Lindsay Rasmussen, Verena Rass, Michael Reznik, Risa Richardson, Cassia Righy Shinotsuka, Chiara Robba, Courtney Robertson, Benjamin Rohaut, John Rolston, Mario Rosanova, Eric Rosenthal, Mary Beth Russell, Gisele Sampaio Silva, Leandro Sanz, Simone Sarasso, Aarti Sarwal, Nicolas Schiff, Caroline Schnakers, David Seder, Vishank Shah, Amy Shapiro-Rosen, Angela Shapshak, Kartavya Sharma, Tarek Sharshar, Lori Shutter, Jacobo Sitt, Beth Slomine, Peter Smielewski, Wade Smith, Emmanuel Stamatakis, Alexis Steinberg, Robert Stevens, Jose Suarez, Bethany Sussman, Shaurya Taran, Aurore Thibaut, Zachary Threlkeld, Lorenzo Tinti, Daniel Toker, Michel Torbey, Stephen Trevick, Alexis Turgeon, Andrew Udy, Panos Varelas, Paul Vespa, Walter Videtta, Henning Voss, Ford Vox, Amy Wagner, Mark Wainwright, John Whyte, Briana Witherspoon, Aleksandra Yakhind, Ross Zafonte, Darin Zahuranec, Chris Zammit, Bei Zhang, Wendy Ziai, Lara Zimmerman, Elizabeth Zink

Affiliations

¹ Department of Neurology, Ayer Neuroscience Institute, Hartford Hospital, Hartford, CT, USA.
² Department of Neurology, Stanford University School of Medicine, 453 Quarry Road, MC 5235, Palo Alto, CA, USA. hkirsch@stanford.edu.
³ Department of Neurology, Division of Stroke and Palliative Care, University of Washington, Seattle, WA, USA.
⁴ Department of Neuroscience Nursing, Massachusetts General Hospital, Boston, MA, USA.
⁵ Division of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
⁶ , Windham, New Hampshire, USA.
⁷ Departments of Neurology and Neurosurgery, UVA Health, Charlottesville, VA, USA.
⁸ Department of Pediatrics, Children's Hospital of Michigan, Detroit Medical Center, Detroit, MI, USA.
⁹ Department of Neurology, Critical Care Medicine, and Emergency Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
¹⁰ Department of Neurology, University of Michigan School of Medicine, Ann Arbor, MI, USA.
¹¹ Departments of Neurology, Anesthesiology/Critical Care and Surgery, University of Massachusetts Chan Medical School, Worcester, MA, USA.

PMID: 37704937
DOI: 10.1007/s12028-023-01796-0

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data

Matthew N Jaffa et al. Neurocrit Care. 2023 Dec.

. 2023 Dec;39(3):600-610.

doi: 10.1007/s12028-023-01796-0. Epub 2023 Sep 13.

Collaborators

Curing Coma Campaign Collaborators:
Venkatesh Aiyagari, Yama Akbari, Fawaz Al-Mufti, Sheila Alexander, Anne Alexandrov, Ayham Alkhachroum, Moshagan Amiri, Brian Appavu, Meron Awraris Gebre, Mary Kay Bader, Neeraj Badjiata, Ram Balu, Megan Barra, Rachel Beekman, Ettore Beghi, Kathleen Bell, Erta Beqiri, Tracey Berlin, Thomas Bleck, Yelena Bodien, Varina Boerwinkle, Melanie Boly, Alexandra Bonnel, Emery Brown, Eder Caceres, Elizabeth Carroll, Emilio Cediel, Sherry Chou, Giuseppe Citerio, Jan Claassen, Chad Condie, Katie Cosmas, Claire Creutzfeldt, Neha Dangayach, Michael DeGeorgia, Caroline Der-Nigoghossian, Masoom Desai, Michael Diringer, James Dullaway, Brian Edlow, Ari Ercole, Anna Estraneo, Guido Falcone, Salia Farrokh, Simona Ferioli, Davinia Fernandez-Espejo, Ericka Fink, Joseph Fins, Brandon Foreman, Jennifer Frontera, Rishi Ganesan, Ahmeneh Ghavam, Joseph Giacino, Christie Gibbons, Emily Gilmore, Olivia Gosseries, Theresa Green, David Greer, Mary Guanci, Cecil Hahn, Ryan Hakimi, Flora Hammond, Daniel Hanley, Jed Hartings, Ahmed Hassan, Raimund Helbok, Claude Hemphill, H E Hinson, Karen Hirsch, Sarah Hocker, Peter Hu, Xiao Hu, Theresa Human, David Hwang, Judy Illes, Matthew Jaffa, Michael L James, Anna Janas, Morgan Jones, Emanuela Keller, Maggie Keogh, Jenn Kim, Keri Kim, Hannah Kirsch, Matt Kirschen, Nerissa Ko, Daniel Kondziella, Natalie Kreitzer, Julie Kromm, Abhay Kumar, Pedro Kurtz, Steven Laureys, Thomas Lawson, Nicolas Lejeune, Ariane Lewis, John Liang, Geoffrey Ling, Sarah Livesay, Andrea Luppi, Lori Madden, Craig Maddux, Dea Mahanes, Shraddha Mainali, Nelson Maldonado, Rennan Martins Ribeiro, Marcello Massimini, Stephan Mayer, Victoria McCredie, Molly McNett, Jorge Mejia-Mantilla, David Menon, Geert Meyfroidt, Julio Mijangos, Dick Moberg, Asma Moheet, Erika Molteni, Martin Monti, Chris Morrison, Susanne Muehlschlegel, Brooke Murtaugh, Lionel Naccache, Masao Nagayama, Emerson Nairon, Girija Natarajan, Virginia Newcombe, Niklas Nielsen, Naomi Niznick, Filipa Noronha-Falcão, Paul Nyquist, DaiWai Olson, Marwan Othman, Adrian Owen, Llewellyn Padayachy, Soojin Park, Melissa Pergakis, Len Polizzotto, Nader Pouratian, Marilyn Price Spivack, Lara Prisco, Javier Provencio, Louis Puybasset, Chethan Rao, Lindsay Rasmussen, Verena Rass, Michael Reznik, Risa Richardson, Cassia Righy Shinotsuka, Chiara Robba, Courtney Robertson, Benjamin Rohaut, John Rolston, Mario Rosanova, Eric Rosenthal, Mary Beth Russell, Gisele Sampaio Silva, Leandro Sanz, Simone Sarasso, Aarti Sarwal, Nicolas Schiff, Caroline Schnakers, David Seder, Vishank Shah, Amy Shapiro-Rosen, Angela Shapshak, Kartavya Sharma, Tarek Sharshar, Lori Shutter, Jacobo Sitt, Beth Slomine, Peter Smielewski, Wade Smith, Emmanuel Stamatakis, Alexis Steinberg, Robert Stevens, Jose Suarez, Bethany Sussman, Shaurya Taran, Aurore Thibaut, Zachary Threlkeld, Lorenzo Tinti, Daniel Toker, Michel Torbey, Stephen Trevick, Alexis Turgeon, Andrew Udy, Panos Varelas, Paul Vespa, Walter Videtta, Henning Voss, Ford Vox, Amy Wagner, Mark Wainwright, John Whyte, Briana Witherspoon, Aleksandra Yakhind, Ross Zafonte, Darin Zahuranec, Chris Zammit, Bei Zhang, Wendy Ziai, Lara Zimmerman, Elizabeth Zink

Affiliations

¹ Department of Neurology, Ayer Neuroscience Institute, Hartford Hospital, Hartford, CT, USA.
² Department of Neurology, Stanford University School of Medicine, 453 Quarry Road, MC 5235, Palo Alto, CA, USA. hkirsch@stanford.edu.
³ Department of Neurology, Division of Stroke and Palliative Care, University of Washington, Seattle, WA, USA.
⁴ Department of Neuroscience Nursing, Massachusetts General Hospital, Boston, MA, USA.
⁵ Division of Neurocritical Care, Department of Neurology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
⁶ , Windham, New Hampshire, USA.
⁷ Departments of Neurology and Neurosurgery, UVA Health, Charlottesville, VA, USA.
⁸ Department of Pediatrics, Children's Hospital of Michigan, Detroit Medical Center, Detroit, MI, USA.
⁹ Department of Neurology, Critical Care Medicine, and Emergency Medicine, University of Pittsburgh, Pittsburgh, PA, USA.
¹⁰ Department of Neurology, University of Michigan School of Medicine, Ann Arbor, MI, USA.
¹¹ Departments of Neurology, Anesthesiology/Critical Care and Surgery, University of Massachusetts Chan Medical School, Worcester, MA, USA.

PMID: 37704937
DOI: 10.1007/s12028-023-01796-0

Erratum in

Correction: Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data.
Jaffa MN, Kirsch HL, Creutzfeldt CJ, Guanci M, Hwang DY, LeTavec D, Mahanes D, Natarajan G, Steinberg A, Zahuranec DB, Muehlschlegel S; Curing Coma Campaign Collaborators. Jaffa MN, et al. Neurocrit Care. 2025 Jun;42(3):1130-1131. doi: 10.1007/s12028-024-02098-9. Neurocrit Care. 2025. PMID: 39407076 No abstract available.

Abstract

Background: To facilitate comparative research, it is essential for the fields of neurocritical care and rehabilitation to establish common data elements (CDEs) for disorders of consciousness (DoC). Our objective was to identify CDEs related to goals-of-care decisions and family/surrogate decision-making for patients with DoC.

Methods: To achieve this, we formed nine CDE working groups as part of the Neurocritical Care Society's Curing Coma Campaign. Our working group focused on goals-of-care decisions and family/surrogate decision-makers created five subgroups: (1) clinical variables of surrogates, (2) psychological distress of surrogates, (3) decision-making quality, (4) quality of communication, and (5) quality of end-of-life care. Each subgroup searched for existing relevant CDEs in the National Institutes of Health/CDE catalog and conducted an extensive literature search for additional relevant study instruments to be recommended. We classified each CDE according to the standard definitions of "core", "basic", "exploratory", or "supplemental", as well as their use for studying the acute or chronic phase of DoC, or both.

Results: We identified 32 relevant preexisting National Institutes of Health CDEs across all subgroups. A total of 34 new instruments were added across all subgroups. Only one CDE was recommended as disease core, the "mode of death" of the patient from the clinical variables subgroup.

Conclusions: Our findings provide valuable CDEs specific to goals-of-care decisions and family/surrogate decision-making for patients with DoC that can be used to standardize studies to generate high-quality and reproducible research in this area.

Keywords: Coma; Common data elements; Consciousness; Goals of care; Shared decision-making; Surrogate decision-maker.

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Update of

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-care and Family/Surrogate Decision-Maker Data.
Jaffa MN, Kirsch HL, Creutzfeldt CJ, Guanci M, Hwang DY, LeTavec D, Mahanes D, Steinberg A, Natarajan G, Zahuranec DB, Muehlschlegel S. Jaffa MN, et al. Res Sq [Preprint]. 2023 Jun 26:rs.3.rs-3084539. doi: 10.21203/rs.3.rs-3084539/v1. Res Sq. 2023. Update in: Neurocrit Care. 2023 Dec;39(3):600-610. doi: 10.1007/s12028-023-01796-0. PMID: 37461521 Free PMC article. Updated. Preprint.

References

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Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data

Collaborators

Affiliations

Common Data Elements for Disorders of Consciousness: Recommendations from the Working Group on Goals-of-Care and Family/Surrogate Decision-Maker Data

Authors

Collaborators

Affiliations

Erratum in

Abstract

Update of

References

MeSH terms

LinkOut - more resources

Full Text Sources