Psychological states and needs among post-allogeneic hematopoietic stem cell transplantation survivors

Abstract

Objectives: To analyze psychological states and needs of patients after allogeneic hematopoietic stem cell transplantation (allo-HSCT).

Methods: Questionnaires were sent to 101 allo-HSCT survivors and 96 questionnaires were returned. The questionnaire covered several categories: (1) demographics and general information, (2) physical conditions, (3) psychologic status and sleep quality, (4) survivor's comments on transplantation, (5) demands and needs, (6) preferred forms and channels of information.

Results: Depression and poor sleep quality were major concerns troubling allo-HSCT survivors. A notable discrepancy exists between clinically diagnosed depression (4.2%) and self- reported depression based on BDI-13 (55.2%). Young adults (18-49 years old), chronic graft-versus-host disease, the ECOG performance score of 2-4, surviving within 5 years since HSCT, no or low dose of ATG used and being single were significantly associated with self-reported depression. Based on the PSQI score, 75% of survivors experienced varying degrees of sleep quality impairment. Young adults, chronic GVHD and the ECOG score of 2-4 were significantly associated with worse sleep quality. The majority of patients reported unmet needs on physical and psychosocial aspects. Nutrition information was the most important topic, followed by disease treatments and fatigue. Differences in informational needs were found in the survivors according to age, time since HSCT and gender. WeChat public account and WeChat applet, mobile interactive platform and one-to-one conversation were the favorite channel for information.

Conclusions: Clinicians should establish more appropriate survivorship care plans focusing on survivors' psychologic states, demands and needs.

Keywords: allogeneic hematopoietic stem cell transplantation; comorbidities; demands and needs; depression; sleep quality.