Quality of Life in Myelodysplastic Syndromes (MDS): Results from U.S. & European Patient Forums.
Authors: Heptinstall Kathy ,   the MDS Foundation’s Board of Directors
Published: October 2019

Abstract
The MDS Foundation, Inc., an international non-profit organization established by physicians and researchers to foster information exchange, conducted a series of patient forums in 16 U.S. and European cities to assess patients’ knowledge about their disease and key issues affecting quality of life (QoL). MDS patients and spouses, friends, or caregivers were recruited to participate in forums in 2005–2006 through the MDS Foundation Center of Excellence in participating cities: Chicago, New York, Palo Alto, Philadelphia, Pittsburgh, Scottsdale, Tampa, Bournemouth (U.K.), Leeds (U.K.), Edinburgh, London, Marseille, Paris, Stockholm, Vienna. Clinical nurse specialists with expertise in QoL issues in MDS patients conducted the interactive 1-day forums. A single written questionnaire was developed, vetted, and translated by participating Centers. Completion of the anonymous questionnaire, distributed and collected onsite at the forums, was voluntary. Responses to questionnaires were analyzed using descriptive statistics only. A total of 287 MDS patients and caregivers, spouses, or friends participated in the forums (186 patients; 101 caregivers, spouses, or friends). In both Europe and the U.S., the patient sample was approximately equal with respect to gender (slightly higher percentage of males), and the majority of patients were <75 years of age. Patients’ knowledge about their disease appears to be variable between and within countries: 20 to 40% of patients reported that they did not know their MDS subtype and 82–100% did not know their International Prognostic Scoring System (IPSS) risk category. However, 95–96% of patients reported knowing that they had a bone marrow biopsy to diagnose their disease. Interestingly, the percentage of patients who reported having bone marrow biopsy at any time after their diagnosis was substantially lower for the Leeds, Bournemouth, Philadelphia (2 forums), and Pittsburgh forums (57%) than that for all other forums (83%). Several questionnaire responses revealed that disease symptoms and clinical management impact patients’ QoL. Infections requiring hospitalizations was reported to be 32% at European forums (range: 20–50%) and 28% at U.S. forums (range: 21–33%). The majority of patients reported needing or being treated with transfusions (64%, U.S.; 81%, Europe) or myeloid growth factors (80%, U.S.; 44%, Europe). A low, but not insignificant, percentage of patients reported having iron chelation therapy (15%, U.S.; 17%, Europe). The survey responses indicate that MDS patients in the U.S. and Europe hold similar views about the impact the disease has on their QoL. Patient QoL was similar between sites and reflected feelings of life disruption due to MDS and time required for disease management. Fatigue was most frequently cited disease symptom affecting QoL by interfering with patients’ ability to perform daily living activities, work, and participation in social and family life. Several factors appear to contribute to patients’ feelings of “loss of life control,” including physician visits, diagnostic testing, transfusions, treatment, travel time, and symptom or adverse event management. Physicians and other healthcare professionals should be aware of the factors that impact patients’ QoL and attempt to provide patients with information, treatment options, and availability of support services to lessen disease burden and minimize impact on QoL.