*Purpose: Caregivers are required for heart and lung transplantation, however, little emphasis is placed on the pre-transplant caregiving experience. Our objective was to perform a systematic review/meta-analysis on the effects of caregiving on informal caregivers of listed adult heart or lung transplant candidates.

*Methods: PubMed, EMBASE, PsycINFO and CINAHL databases were searched (1998 to July 2018) for original research articles (any language) regarding caregivers of pre-transplant, adult, thoracic transplant candidates. Two reviewers independently screened references for inclusion. Disagreements were resolved by third adjudicator. Two reviewers independently abstracted data including article details and caregiver-reported outcomes (quality of life, anxiety, depression, mood disturbances, caregiver burden, coping strategies, social intimacy and stress). Meta-analysis was planned when two or more studies reported an outcome. Heterogeneity was estimated via I² statistic.

*Results: Of 458 references screened, 21 met inclusion criteria representing 1252 caregivers (373 heart and 879 lung). Eight studies reported on quality of life (7 lung, 2 heart); six on depression (4 lung, 5 heart); three on anxiety (3 lung, 2 heart); three on mood disturbance (3 lung); seven on caregiver burden (7 lung, 3 heart); seven on caregiver coping (4 lung, 5 heart); two on social intimacy (2 lung) and three on stress (2 lung, 1 heart). Caregiver stress was moderate and higher than expected norms. Caregiver burden scale (N=40) showed mild burden (mean 20.9±2.3); whereas the mean composite score of Scale for Caregiver Burden Revised (SCB-R) was 8.1 (IQR 7.6, 8.7) Objective and 4.5 (IQR 3.5, 5.5) Subjective (N=514). Mood disturbances in caregivers were higher pre-transplant than post-transplant. Pre-transplant, the Beck Anxiety Inventory demonstrated mild anxiety (mean 8.4±9.5; N=39); the State-Trait Anxiety Inventory (N=514) mean composite was borderline at 38.6 (interquartile [IQR] 37.6, 39.5); whereas the Hospital Anxiety and Depression Scale (N=40) was normal at 5.2. The mean composite Beck’s Depression Inventory (N=514) and HADS Depression (N=40) were normal at 7.4 (IQR 6.8, 8) and 3.3 (±3), respectively, whereas both the mean composite Center for Epidemiologic Studies- Depression Scale-20 (N=54) and CES-D 10 (N=93) were borderline at 14.7 (IQR 12.6, 16.8) and 9.5 (±6.6), respectively. Quality of life was worse than expected. Passive coping strategies (resignation, avoidance) were associated with higher perceived burden than active coping strategy.

*Conclusions: Pre-transplant caregiving poses psychosocial risks to the primary caregiver. Effective interventions to ameliorate these risks should be a research priority.

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