The GIMEMA Foundation has a dedicated unit focused on studying the quality of life of patients with hematological malignancies.
The main objective of the GIMEMA Foundation’s Health Outcomes Research Unit is to devise, promote and manage research projects aimed at evaluating the quality of life of patients with hematological malignancies and help to improve health care quality.
Headed by Prof. Fabio Efficace, over the years the Unit has collaborated with several international partners and so far, has produced more than 200 papers, stemming from the research activities promoted by the Unit.
Patient-reported outcomes (PRO)
Over the course of the last decades, remarkable progress has been made in various areas related to hematological diseases. The outlook for the future is encouraging, with improved diagnostic methods and several new drugs currently in the pipeline. However, clinicians and patients frequently face challenging choices related to treatments that are often similar in terms of clinical effectiveness and safety, adding complexity to medical decision making. Within this new scenario, a more patient-centred approach is advisable.
Traditionally, hematologists have focused on laboratory and clinical measurements, but there is now plenty of evidence that health status information obtained through patient self-reporting provides clinically relevant information that cannot be acquired by the standard measurements collected in clinical research. Integrating the patient’s point of view in cancer care can be achieved using patient-reported outcomes (PRO), defined by the US Food and Drug Administration (FDA) as a measurement of any aspect of a patient’s health status that is provided directly by the patient, without the patient’s responses being evaluated by a clinician or anyone else. Quality of life (QoL) and symptom burden assessments, as reported by patients themselves, are well-known examples of key PRO frequently used in hematology.
The evidence that proves the added value of integrating PROs in clinical research and routine care in hematology is stacking up. For example, it has been shown that PROs have contributed to a better understanding of the burden of disease and treatment across several hematological malignancies. There is also evidence for the independent prognostic value of PROs for clinical outcomes, such as survival.