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Development of the international spinal cord injury psychological functioning basic data set

Spinal Cord volume 64, pages 60–65 (2026)Cite this article

Subjects

Abstract

Study design

Consensus exercise, narrative review.

Objectives

To create an International Spinal Cord Injury Psychological Functioning Basic Data Set (PSYCHBDS).

Setting

International working group.

Methods

Online meetings and email communications throughout 2020-2022. The authors reviewed measures used by SCI rehabilitation psychologists and reported in the literature. Selected measures and their psychometric properties were described. Consensus was reached on the measures and other data elements to include in the PSYCHBDS. The draft-PSYCHBDS was further reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS.

Results

The group agreed to restrict the scope of the PSYCHBDS to the domains of anxiety and depressed mood and to use the 2-item versions of the Patient Health Questionnaire (PHQ) and the Generalized Anxiety Disorder (GAD). The PSYCHBDS consists of six standard and three optional data elements: date of data collection, professional background of data collector (optional), presence of psychological disorders before the onset of SCI, administration mode, PHQ-2 score, PHQ-9 score (optional), GAD-2 score, GAD-7 score (optional), and therapy for current psychological disorders. A data collection form and scoring instructions were developed.

Conclusions

An international working group of experts achieved consensus on a data set to collect basic information on psychological factors and recommends its use in SCI/D rehabilitation and research.

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Acknowledgements

We wish to acknowledge the support and contributions of many organizations and individuals who provided suggestions and guidance to this project including the Common Data Elements NINDS/NIH working groups, the European Spinal Psychologists Association, the ISCoS Psychosocial and Quality of life Special Interest Groups, Paralyzed Veterans of America, and the Spinal Cord Research Evidence from Canada.

Author information

Authors and Affiliations

  1. Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands

    Marcel W. M. Post

  2. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA

    Denise G. Tate & Duygu Kuzu

  3. Faculty of Medicine, McGill University, Montreal, QC, Canada

    Sara Ahmed & Susan J. Bartlett

  4. Craig Hospital, Englewood, CO, USA

    Susan Charlifue & Jennifer Coker

  5. John Walsh Centre for Rehabilitation Research, University of Sydney, Sydney, NSW, Australia

    Ashley Craig

  6. Boston Medical Center and Boston University School of Medicine, Boston, MA, USA

    Stanley Ducharme

  7. National Spinal Injuries Centre, Stoke Mandeville Hospital, Buckinghamshire Healthcare NHS Trust, Aylesbury, UK

    Jane Duff

  8. Feinberg School of Medicine, Northwestern University and Shirley Ryan AbilityLab, Chicago, IL, USA

    Allen W. Heinemann

  9. Department of Rehabilitation Medicine, University of Minnesota Medical School, Minneapolis, MN, USA

    Kimberley R. Monden

  10. Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN, USA

    Dan Rohe

  11. Department of Spinal Cord Injury, Sint Maartenskliniek, Nijmegen, the Netherlands

    Tijn van Diemen

  12. Shriners Children’s Chicago, Chicago, IL, USA

    Kathy Zebracki

Authors
  1. Marcel W. M. Post
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  2. Denise G. Tate
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  3. Sara Ahmed
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  4. Susan J. Bartlett
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  5. Susan Charlifue
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  6. Jennifer Coker
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  7. Ashley Craig
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  8. Stanley Ducharme
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  9. Jane Duff
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  10. Allen W. Heinemann
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  11. Duygu Kuzu
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  12. Kimberley R. Monden
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  13. Dan Rohe
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  14. Tijn van Diemen
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  15. Kathy Zebracki
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Contributions

MWP Co-chaired the working group that developed the PSYCHBDS, took part in the reviews of measures and drafted the manuscript. DGT Chaired the working group that developed the PSYCHBDS and contributed to the writing of the manuscript. SJB, DK, KM, AC, TvD, KZ, JC, and JD took part in the working group discussions, the reviews of measures, and provided feedback on the manuscript. SA, SC, DR, SD, and AWH took part in the working group discussions and provided feedback on the manuscript.

Corresponding author

Correspondence to Marcel W. M. Post.

Ethics declarations

Ethical approval

Not applicable. We did not apply for ethical approval of this consensus exercise. This project did not involve human subjects to test the development of this new dataset. Furthermore, to our knowledge, this consensus project is not considered ‘research involving human participants’ because there was no distinction between the roles of ‘researcher’ and ‘subjects’ in this project.

Competing interests

The authors declare no competing interests.

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Post, M.W.M., Tate, D.G., Ahmed, S. et al. Development of the international spinal cord injury psychological functioning basic data set. Spinal Cord 64, 60–65 (2026). https://doi.org/10.1038/s41393-025-01144-3

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