Prognostic Understanding, Quality of Life, and Mood in Patients Undergoing Hematopoietic Stem Cell Transplantation

Background: In advanced cancers, patients' prognostic perceptions influence their medical decisions. However, little is known about how patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HCT) and their family caregivers (FC) understand their prognosis. We examined prognostic understanding in these patients and their FC during hospitalization for HCT and its relationship with quality of life (QOL) and mood. Methods: We conducted a longitudinal study of patients hospitalized for HCT and their FC. At baseline (6 days pre-HCT), we used a 10-item questionnaire to measure patients' and FC information preferences and perception of prognosis. We also asked oncologists to estimate the patients' prognosis. At day-6, day+1, day+8 of HCT, we assessed QOL (Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT)), and mood (Hospital Anxiety and Depression Scale). We evaluated the relationship between participants' prognostic understanding and their QOL and mood during hospitalization for HCT using multivariable linear mixed models. Results: We enrolled 97% of consecutively eligible patients undergoing autologous (n=30), myeloablative (n=30) or reduced intensity (n=30) allogeneic HCT. Most patients (80/90, 88.9%) and FC (41/47, 87.1%) believed that it is extremely or very important to know about prognosis. However, the majority of patients (66/85, 77.6%) and FC (33/46, 71.7%) reported an inaccurate and more optimistic perception of the patients' prognosis compared to the oncologist (P < 0.0001) [Figure 1]. Patients with an accurate understanding of their prognosis reported worse QOL (F = 4.3, P = 0.03) and a higher rate of depression (F = 4.4, P = 0.04) with worsening depressive symptoms over time (F = 4.13, P = 0.006) compared to patients with an inaccurate prognostic perception. Conclusions: The majority of patients and FC reported inaccurate and more optimistic perception of prognosis compared with the oncologist. Patients with an accurate perception of their prognosis had lower QOL, higher rates of depression, and worsening depression symptoms during hospitalization for HCT. Interventions are needed to improve prognostic understanding, while providing them with the psychosocial support they need to cope with this difficult information. Figure 1: Patients', Family Caregivers', and Oncologists' Prognostic Perception Figure 1:. Patients', Family Caregivers', and Oncologists' Prognostic Perception Disclosures Off Label Use: Sorafenib for FLT3-ITD AML.