Quality of life, burden and satisfaction with care in caregivers of patients with a spinal cord injury during and after rehabilitation

Study design Longitudinal, prospective cohort study. Objectives To examine the course that burden, quality of life (QoL) and satisfaction with care taken in Dutch caregivers of patients with a SCI. Setting Adelante Rehabilitation Centre and Dutch community, the Netherlands Methods Caregiver Strain index (CSI), Short Form36 (SF-36) and Caregivers' Satisfaction with (Stroke) Care Questionnaire (C-SASC) were administered to caregivers (n = 37) of patients with a recently acquired SCI at the start of rehabilitation (T1), discharge from rehabilitation (T2) and at 8 weeks (T3), 6 months (T4) and 18 months after discharge (T5). Results During rehabilitation, 20 caregivers (54%) experienced high levels of burden (cutoff >6). CSI scores significantly decreased during follow-up (median CSI score T1:7 IQR[5,10], T5:4 IQR[1,7], p = 0.010), at T5 5 caregivers (24%) scored >6 on burden. Initial low scores on QoL improved significantly in the SF-36 domains 'social-functioning', 'emotional-role-functioning', 'mental health' and 'vitality'. Overall satisfaction with care of caregivers was good (C-SASC: median 3, IQR [3,4]) and stable over time. Moderate strongly negative correlations were found between total CSI-score and 'social-functioning' (T2-T3-T4), 'emotional-role-functioning' (all time points), 'mental health' (all time points) and 'vitality' (all time points) with p values < 0.041. Conclusions This study demonstrates the high burden and a low QoL on the 'the Mental Health Component' domains (or MHC) of caregivers during inpatient rehabilitation. During the early home phase, we found a significant improvement in burden and MHC. Clinicians working with both SCI-patients and caregivers should be aware of the possible high burden and low QoL of caregivers during rehabilitation.