Unmet Needs and Their Impact on Quality of Life and Symptoms in Myelodysplastic Neoplasm Patients and Caregivers
Year: 2025
Type: article
Study design: Observational Study
Abstract: 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.
Source: Cancers
Authors: Elena Crisà, Daniela Cilloni, Marta Riva, Enrico Balleari, Daniela Barraco, Beatrice Manghisi, Lorenza Borin, Michela Calmasini, Anna Calvisi, Isabella Capodanno, Matteo Giovanni Della Porta, Elisa Diral, Bruno Fattizzo, Susanna Fenu, Stefania Paolini, Carlo Finelli, Claudio Fozza, Chiara Frairia, Valentina Giai, Mauro Turrini, Maria Antonia Isoni, Federico Itri, Luca Maurillo, Alfredo Molteni, Giuseppe Alberto Palumbo, Anna Maria Pelizzari, Federica Pilo, Antonella Poloni, Costanza Bosi, Grazia Sanpaolo, Rosaria Sancetta, Cristina Amato, Valeria Santini, Maria Teresa Voso, Sam Salek, Tatyana Ionova, Annamaria Nosari, Esther Natalie Oliva
Institutions: Candiolo Cancer Institute, A. O. Ordine Mauriziano di Torino, University of Turin, Azienda Socio Sanitaria Territoriale Grande Ospedale Metropolitano Niguarda, Ospedale Policlinico San Martino, Ospedale di Circolo e Fondazione Macchi, Aziende Socio Sanitarie Territoriale dei Sette Laghi, Azienda Ospedaliera San Gerardo, Azienda Sanitaria Unità Locale di Reggio Emilia, Humanitas University, IRCCS Humanitas Research Hospital, IRCCS Ospedale San Raffaele, Istituto di Ricovero e Cura a Carattere Scientifico San Raffaele, University of Milan, Azienda Ospedaliera San Giovanni Addolorata, Istituto di Ematologia di Bologna, University of Sassari, Azienda Ospedaliera Citta' della Salute e della Scienza di Torino, Ospedale Valduce, Ospedale San Luigi Gonzaga, University of Rome Tor Vergata, Azienda Socio Sanitaria Territoriale di Cremona, University of Catania, Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia, Azienda Ospedaliera G. Brotzu, Marche Polytechnic University, Azienda Ospedaliero-Universitaria delle Marche, Guglielmo da Saliceto Hospital, Casa Sollievo della Sofferenza, Ospedale dell' Angelo, Azienda Ospedaliero-Universitaria Careggi, University of Florence, University of Hertfordshire, St Petersburg University, London North West Healthcare NHS Trust
Language: English
Topic: Cancer survivorship and care
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,499
Funder: Ministero della Salute
Award: G387172998
OpenAlex ID: W4410173034