Symptom Clusters in Family Caregivers of Hematopoietic Stem Cell Transplantation Recipients: Loneliness as a Risk Factor

Abstract

A symptom cluster is a group of 2 or more symptoms that occur together and are related to each other. Family caregivers of allogeneic hematopoietic stem cell transplantation (HSCT) recipients experience multiple concurrent symptoms, but the majority of symptom research in this population has focused on assessing and managing individual symptoms. The purpose of this analysis was to determine (1) whether clusters of 5 highly prevalent symptoms (fatigue, sleep disturbance, depression, anxiety, and cognitive impairment) in allogeneic HSCT caregivers could be identified and (2) which caregiver and patient characteristics influence membership in the identified symptom cluster groups. Baseline cross-sectional data were collected from allogeneic HSCT caregivers participating in a randomized controlled trial at the National Institutes of Health Clinical Center. Measures included the Caregiver Reaction Assessment (CRA), Health-Promoting Lifestyle Profile II (HPLP-II), Fatigue Symptom Inventory (MFSI), Pittsburgh Sleep Quality Index (PSQI), and Patient-Reported Outcomes Measurement Information System (PROMIS). Cluster analysis was used to identify symptom clusters, and univariate analyses and multiple logistic regression were performed to identify factors that contribute to symptom clusters. The average age of caregivers (n = 44) was 45.20 ± 15.05 years; primarily white (52.3%) and female (88.6%) and often the spouse/partner of the patient (50.0%). Two symptom cluster groups were identified: low symptom burden (n = 24; 54.5%) and high symptom burden (n = 20; 45.5%). Caregivers with higher levels of loneliness (odds ratio, 1.12; 95% confidence interval, 1.04 to 1.22; P = .004) were more likely to be in the high symptom burden group. This study provides evidence that 5 symptoms commonly found in family caregivers-fatigue, sleep disturbance, depression, anxiety, and cognitive impairment-tend to occur in clusters. Therefore, clinicians should be aware that caregivers with 1 or more of these symptoms may be at higher risk for developing the others, and caregivers reporting high levels of loneliness may be at particular risk. Future research is needed to identify novel interventions that target multiple, co-occurring symptoms. Such interventions also might include components that decrease loneliness. © 2022 American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc.

Keywords: Caregivers; Hematopoietic cell transplantation; Symptom burden; Symptom cluster.

Figure 1.

The Theory of Unpleasant Symptoms^* Adapted for the Analysis of Symptom Clusters in HSCT Caregivers