Fear of cancer recurrence, distress, depressive symptoms, and quality of life in hematopoietic stem cell transplantation patients

Background: Symptoms of psychological distress, including fear of cancer recurrence (FCR) and quality of life (QOL) deficits are common along the hematopoietic stem cell transplantation (HCT) survivorship trajectory. Identifying patterns over time could contribute to timely interventions. Materials and Methods: HCT recipients completed the Distress Thermometer (DT), the Center for Epidemiologic Studies-Depression scale (CES-D), the Fear of Relapse and Recurrence Scale, and the Functional Assessment of Cancer Therapy (FACT-BMT) at hospital admission, discharge, 3, 6, 12, and 24 months post-HCT. Demographic data and performance status (PS) were collected at baseline. Mean scores (standard deviation) and frequencies were calculated. We utilized a linear mixed model approach on the repeated measures data (outcome of FCR, with predictors of distress, depressive symptoms and QOL). A multivariate repeated measures regression was constructed to assess what variables were associated with FCR. Results: A total of 198 patients completed questionnaires at admission. A total of 144 patients were deceased or lost to follow-up at 2 years. Both CES-D (P = .006) and DT (P = .0019) scores changed significantly over time and were higher at hospital discharge. FCR did not change significantly (P = .28). QOL was most impaired at hospital discharge. FCR did not correlate with actual recurrence. A significant percentage of recipients were afraid of cancer recurrence; however, a much greater percentage did not feel that fear of recurrence got in the way of enjoying life. QOL (P < .0001) and PS (P = .014) were significant predictors of FCR. A substantial percentage of patients reported significant (>16) depressive symptoms and distress levels (≥4) during the 2-year study period. Conclusions: Depressive symptoms and distress were highest at discharge, whereas overall QOL was lowest. FCR was prominent; yet for the majority, it was not an impediment to enjoying life. A psychosocial intervention may be most useful if introduced at hospital discharge and initiated during the first 3 months following HCT when distress is high.