Long-term health-related quality-of-life in patients with acquired brain injury and their caregivers

Abstract

Objectives: The present study aimed to assess long-term health-related quality-of-life (HRQoL) and potential predictors as well as burden in caregivers of patients with acquired brain injury (ABI). Furthermore, depressive symptoms, well-being, HRQoL and happiness were evaluated in caregivers and patients who had regained communication skills.

Research design: Prospective cross-sectional survey.

Methods: Data of 104 caregivers and 30 patients were analysed. A multiple linear regression model was calculated to identify independent predictors for HRQoL in caregivers. Additionally, correlation analysis was conducted to evaluate associations between patient questionnaire results and caregiver HRQoL.

Results: After a mean time post-injury of 18 years, HRQoL and perceived health status in caregivers remained below normative scores of age-matched controls. Although HRQoL and perceived health status were lower in patients than in caregivers, there was no difference in happiness, perceived QoL or enjoyment of life. Reduced perception in well-being (WHO-5 score < 13) was found in 52% of the caregivers and 36% of the patients. HRQoL in caregivers was predicted by well-being, caregiver strain, depressive symptoms and caregiver age. Furthermore, HRQoL of caregivers was correlated with depressive symptoms and happiness in patients.

Conclusion: This study under-scores the importance of long-term support for caregivers.

• ABI patients
• caregivers
• long-term HRQoL
• well-being

Acknowledgements

The authors wish to thank the Bundesverband Schädel-Hirnpatienten in Not e.V. for their invaluable co-operation and wish to extend their special thanks to the members, who participated in this study.