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The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study

Spinal Cord volume 62, pages 104–109 (2024)Cite this article

Subjects

Abstract

Study design

International Classification of Functioning, Disability and Health (ICF) linking study.

Objective

Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS).

Setting

Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia.

Methods

Analysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6–d9, following established linking rules.

Results

The proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the ‘other issues’ item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency.

Conclusion

The importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.

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Data availability

The data analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The authors thank all participants for their invaluable information about their stories, insights and experiences. Further, we thankfully acknowledge the contributions by the local research team members across the sites for their tireless assistance. Ann Arbor: Constance Pines and Christopher Graves; Denver: Jennifer Coker, Abby Welch, and Bria MacIntyre; Melbourne: Diana Ramirez Hernandez, São Paulo: Angelica Castilho, Alexandra Cristoffi, and Carle Witter.

Funding

This work was supported with a grant from the Craig H Neilsen Foundation, California, USA, grant application ID number 440840.

Author information

Authors and Affiliations

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

    Aline J. Hakbijl-van der Wind, Christel M. C. van Leeuwen, Janneke M. Stolwijk-Swüste & Marcel W. M. Post

  2. Department of Interdisciplinary Health Sciences, Oakland University, Rochester, MI, USA

    Edward J. Rohn

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

    Edward J. Rohn, Denise G. Tate & Martin Forchheimer

  4. Craig Hospital, Englewood, CO, USA

    Susan Charlifue

  5. Department of Orthopedics and Traumatology, Medical School of University of São Paulo, São Paulo, Brazil

    Julia M. D. Greve

  6. Spinal Rehabilitation Service, Caulfield Hospital, Alfred Health, Melbourne, VIC, Australia

    Peter W. New

  7. Epworth-Monash Rehabilitation Medicine Unit, Monash University, Melbourne, VIC, Australia

    Peter W. New

  8. Department of Epidemiology and Preventative Medicine, School of Public Health & Preventative Medicine, Monash University, Melbourne, VIC, Australia

    Peter W. New

  9. University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Groningen, The Netherlands

    Marcel W. M. Post

Authors
  1. Aline J. Hakbijl-van der Wind
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  9. Peter W. New
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  10. Marcel W. M. Post
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Contributions

AH contributed to study design, led qualitative data analysis, and wrote the manuscript. ER contributed to study design and revisions of the manuscript. CL contributed data analysis and revisions of the manuscript. MF developed Table 1 and contributed to revisions of the manuscript. JS, DT, SC and PN contributed to revisions of the manuscript. MP contributed to study design and revisions of the manuscript.

Corresponding author

Correspondence to Aline J. Hakbijl-van der Wind.

Ethics declarations

Competing interests

The authors declare no competing interests.

Ethical approval

The research protocol was approved by the University of Michigan Medical School Institutional Review Board, protocol numbers HUM00126164 and HUM00125769 and the HCA HealthONE Institutional Review Board for Craig Hospital, protocol number 1036454-11. For Brazil, the research protocol was approved by the Medical Ethics Committee of the Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo in April 2018. Approbation number CAAE:283112917.3.0000.0068. For Australia, the project was approved by the Alfred Hospital Ethics Committee on 14 June 2017 (project no. 203/17). We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.

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Hakbijl-van der Wind, A.J., Rohn, E.J., Tate, D.G. et al. The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study. Spinal Cord 62, 104–109 (2024). https://doi.org/10.1038/s41393-023-00954-7

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