Introduction: A large number of kidney donors are also primary caregivers for their recipients. Whilst primary caregiver status is a well-established cause of psychopathology, it has not been investigated within the living kidney donor population. The aims of this study were: (1) To quantify the proportion of donors who were primary caregivers and (2) To establish whether primary caregiver status was associated with increased psychopathology before and after donation. We hypothesised that primary caregivers would demonstrate a greater improvement in scores than non-primary caregivers over the first year after donation, primarily due to the improvement in their own lives as a result of transplantation.

Methods: 100 living kidney donors completed validated questionnaires prior to surgery and at 3 and 12 months post-operatively. Questionnaires measured wellbeing, mood, distress, stress and anxiety.

Results: 43 donors were primary caregivers. 53.5% were parents and 41.9% were spouses. Primary caregivers experienced worse pre-operative psychological scores including lower personal wellbeing (31.2 vs. 27.1; p<0.001) and mood (0.81 vs. 0.33; p= 0.11), and higher stress (5.5 vs. 3.9; p=0.006), anxiety (12.4 vs. 9.8; p<0.001) and distress (12.4 vs. 8.8; p=0.001). At 3 months the 2 groups were no longer significantly different, principally due to improved scores in the primary caregiver group. By 12 months primary caregivers returned to having significantly higher distress, stress and anxiety and lower mood.

Discussion: This study has demonstrated that donor primary caregiver status is associated with inferior pre-operative psychological scores across a range of measures. Distress, anxiety, stress and mood scores remain significantly worse at 12 months, despite a short term improvement at 3 months. 3 months scores may reflect a post-transplant euphoria associated with the recipient being relatively well after transplantation. 12 month scores may represent a realisation that transplantation is associated with its own stresses and complications, which in turn are a source of psychological distress. Pre-operative identification of primary caregiver status and interventions to improve psychological wellbeing prior to donation may be beneficial to donors who have a caregiver role.

« Back to 2015 American Transplant Congress