# Symptom distress evolution over the first year after allogeneic stem cell transplantation – a prospective observational sub-study of the SMILe project

## TL;DR

This study tracks symptom distress in patients after stem cell transplants and finds that fatigue, appetite loss, and pain are most common, with distress often lasting months and possibly linked to graft-versus-host disease.

## Contribution

The study provides new insights into how symptom distress evolves in the first year after allogeneic stem cell transplantation and its association with patient factors like GvHD.

## Key findings

- Fatigue, decreased appetite, and pain showed the highest distress point prevalences post-transplant.
- Distress often persisted for over 30 days in more than half of patients.
- Graft-versus-host disease was linked to symptom distress evolution from day +90 post-transplant.

## Abstract

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).