Journal Article

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

Fenu, Susanna, Maurillo, Luca, Poloni, Antonella, Salek, Sam, Balleari, Enrico, Paolini, Stefania, Fattizzo, Bruno, Molteni, Alfredo, Barraco, Daniela, Nosari, Annamaria, Della Porta, Matteo Giovanni, Diral, Elisa, Turrini, Mauro, Calmasini, Michela, Frairia, Chiara, Capodanno, Isabella, Fozza, Claudio, Oliva, Esther Natalie, Borin, Lorenza, Isoni, Maria Antonia, Pelizzari, Anna Maria, Riva, Marta, Santini, Valeria, Pilo, Federica, Calvisi, Anna, Voso, Maria Teresa, Finelli, Carlo, Amato, Cristina, Giai, Valentina, Bosi, Costanza, Cilloni, Daniela, Crisà, Elena, Sancetta, Rosaria, Manghisi, Beatrice, Sanpaolo, Grazia, Palumbo, Giuseppe Alberto, Itri, Federico, Ionova, Tatyana

2025

Overview

Background/Objectives: The aim of this study was to assess the unmet needs of myelodysplastic 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 caregivers. Methods: A national survey was conducted between June 2022 and May 2023 in 46 hematology centers across Italy, involving 259 patients and 105 caregivers. The survey included validated QoL tools (QOL-E and HM-PRO) to measure the impact of disease and treatments on health-related QoL and symptoms. Results: Of the 259 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 caregivers, 29% reported significant disruption to their work, including changing their job 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: This study identified 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 on QoL, highlighting the urgent need for treatments that reduce hospital dependency, improve patient outcomes, and alleviate the caregiver burden.

• Publisher: MDPI AG,MDPI
• Subject: Aged / Anemia / Anxiety / Blood / Blood transfusion / Caregivers / Chemotherapy / Clinical outcomes / Disease / Emotions / Erythrocytes / Families & family life / Fatigue / Hematology / Hospitals / Leukemia / Likert scale / Neoplasia / Patients / Quality of life / Surveys / Tumors / Variables / Well being