Symptom distress evolution over the first year after allogeneic stem cell transplantation - a prospective...

Symptom-related distress after allogeneic stem cell transplantation (alloSCT) significantly impairs quality of life and long-term health. However, symptom distress evolution is not substantiated and potential influences of patient-related factors remain unclear. This study's aims were to (A1) describe first-year post-alloSCT symptom distress evolution, (A2) explore that evolution in view of three patient factors: graft-versus-host-disease (GvHD), gender, age group.

This prospective longitudinal observational sub-study of the main SMILe (SteM cell transplantatIon faciLitated by eHealth) study used demographic and clinical data of patients receiving the SMILe Integrated Care Model, and their electronic patient-reported symptom distress outcomes. Patients reporting ≥ 1 time pre- and regularly post-alloSCT on 10 relevant symptoms (distress = 1-10 scale, none = 0), were included. We calculated distress point prevalences at 10 time points and plotted distress score trajectories, determining distress durations and distress persisting > 30 days uninterrupted throughout the first year post-alloSCT (A1). We used boxplot faceting visualising distress persistence by patient factors, and sought parallel-evolving GvHD and distress point prevalences (A2).

Four symptoms contributed to the highest distress point prevalences (fatigue 48.2-76.9%, decreased appetite 21.7-56.9%, pain 25.4-47.7%) and high-scoring distress trajectories (≥ 3 in fatigue, decreased appetite, dyspnea) - with months of uninterrupted distress (65.7% of patients). We identified at-risk patient groups with exceptional distress persistence. Parallel-evolving point prevalences from day + 90 post-alloSCT suggested GvHD influenced symptom distress.

Symptom-related distress monitoring and management in alloSCT follow-up is important. GvHD management may require gender- and age-tailored interventions against distress persistence.

The main SMILe study was registered at who.int/clinical-trials-registry-platform: DRKS00020347, https://trialsearch.who.int/Trial2.aspx?TrialID=DRKS00020347 , date of registration: 03/01/2020 (Freiburg) and clinicaltrials.gov: NCT04789863, https://clinicaltrials.gov/expert-search?term=NCT04789863 , first posted: 03/10/2021 (Basel).