Discrepancy between disability and reported well-being after traumatic brain injury

Journal of Neurology Neurosurgery & Psychiatry, vol. 93, pp. 785–796

Abstract

BACKGROUND: Following traumatic brain injury (TBI), the clinical focus is often on disability. However, patients' perceptions of well-being can be discordant with their disability level, referred to as the 'disability paradox'. We aimed to examine the relationship between disability and health-related quality of life (HRQoL) following TBI, while taking variation in personal, injury-related and environment factors into account. METHODS: We used data from the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury study. Disability was assessed 6 months post-injury by the Glasgow Outcome Scale-Extended (GOSE). HRQoL was assessed by the SF-12v2 physical and mental component summary scores and the Quality of Life after Traumatic Brain Injury overall scale. We examined mean total and domain HRQoL scores by GOSE. We quantified variance in HRQoL explained by GOSE, personal, injury-related and environment factors with multivariable regression. RESULTS: Six-month outcome assessments were completed in 2075 patients, of whom 78% had mild TBI (Glasgow Coma Scale 13-15). Patients with severe disability had higher HRQoL than expected on the basis of GOSE alone, particularly after mild TBI. Up to 50% of patients with severe disability reported HRQoL scores within the normative range. GOSE, personal, injury-related and environment factors explained a limited amount of variance in HRQoL (up to 29%). CONCLUSION: Contrary to the idea that discrepancies are unusual, many patients with poor functional outcomes reported well-being that was at or above the boundary considered satisfactory for the normative sample. These findings challenge the idea that satisfactory HRQoL in patients with disability should be described as 'paradoxical' and question common views of what constitutes 'unfavourable' outcome.

Authors 11

1. Isabel Retel Helmrich corresponding

   Erasmus MC

   Affiliation as printed

   Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands i.retelhelmrich@erasmusmc.nl

   Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, 3000 CA Rotterdam, Zuid-Holland, The Netherlands

2. David V. Klaveren

   Tufts Medical Center · Erasmus MC

   Affiliation as printed

   Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

   Predictive Analytics and Comparative Effectiveness Center, Institute for Clinical Research and Health Policy Studies/Tufts Medical Center, Boston, Massachusetts, USA

3. Nada Anđelić

   Oslo University Hospital · University of Oslo

   Affiliation as printed

   Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway

   Research Centre for Habilitation and Rehabilitation Models and Services (CHARM), Department of Health and Society, University of Oslo, Oslo, Norway

4. Hester Floor Lingsma

   Erasmus MC

   Affiliation as printed

   Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

5. Andrew I.R. Maas

   Antwerp University Hospital

   Affiliation as printed

   Department of Neurosurgery, University Hospital Antwerp, Edegem, Antwerp, Belgium

6. David Krishna Menon

   University of Cambridge

   Affiliation as printed

   Division of Anaesthesia, Cambridge University, Cambridge, Cambridgeshire, UK

7. Suzanne Polinder

   Erasmus MC

   Affiliation as printed

   Department of Public Health, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

8. Cecilie Røe

   Oslo University Hospital · University of Oslo

   Affiliation as printed

   Department of Physical Medicine and Rehabilitation, Oslo University Hospital, Oslo, Norway

   Research Centre for Habilitation and Rehabilitation Models and Services (CHARM), Department of Health and Society, University of Oslo, Oslo, Norway

9. Ewout Willem Steyerberg Aachen Department of Biomedical Data Sciences

   Leiden University Medical Center · Erasmus MC

   Affiliation as printed

   Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, Zuid-Holland, The Netherlands

   Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

10. Ernest van Veen

    Erasmus MC

    Affiliation as printed

    Department of Intensive Care, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

    Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands

11. Lindsay Wilson

    University of Stirling

    Affiliation as printed

    Division of Psychology, University of Stirling, Stirling, UK