Unmet Needs and Their Impact on Quality of Life and Symptoms in Myelodysplastic Neoplasm Patients and Caregivers

Authors:
Preprint
Publisher website
Google Scholar
Abstract
Background/Objectives: This study aimed to assess the unmet needs of myelodysplas-tic neoplasm (MDS) patients and their caregivers, focusing on how these needs impact quality of life (QoL) and daily functioning. MDS predominantly affects older adults. It is often complicated by severe red blood cell transfusion-dependent anemia and may require frequent hospital visits, conferring a substantial burden on patients and care-givers. Methods: A national survey was conducted between June 2022 and May 2023 in 46 hematology centers in Italy, involving 259 patients and 105 caregivers. The sur-vey included validated QoL tools (QOL-E and HM-PRO) to measure the impact of dis-ease and treatments on health-related (QoL) and symptoms. Results: Of the patients surveyed, 42% were transfusion-dependent, with 45% reporting distress related to hospital travel, which was significantly associated with lower QoL scores (QOL-E physical score 50.0 vs. 62.5, p<0.001). Transfusion dependency led to worse outcomes across physical, emotional, and social domains (HM-PRO part A score 59.8 vs 23.7, p<0.001). Anxiety affected 66% of patients, while 56% reported feeling emotionally distressed. Forty-eight percent of patients required a caregiver, and among the care-givers, 29% reported significant disruptions in their work, including job changes or reduced hours. Patients requiring frequent hospital visits showed notably worse QoL scores (HM-PRO emotional score 56.8 vs. 31.8, p<0.001). Conclusions: The study iden-tified substantial unmet needs for MDS patients, particularly in addressing the heavy burden of transfusions and hospital visits. Both patients and caregivers experienced significant impact on daily life and in QoL, underscoring the urgent need for treat-ments that reduce hospital dependency, improve patient outcomes, and alleviate the caregiver burden.

This publication has 35 references indexed in Scilit: