Quality of Life Assessment in Adult Hematology: An Update.
Authors: Prommer Eric E. 
Published: October 2019

Abstract
Health-related quality of life(HRQL) has been defined as the subjective perception of the impact of health status, including disease and treatment, on physical, psychological, and social functioning and well-being. Because of its multidimensional nature, HRQL measurement reflects a broader perspective than clinical evaluation methods. HRQL data can be utilized in a number of different areas, such as outcome measures in Phase III trials, in determining patient preferences, as a determinator of treatment efficacy, and clinical and drug regulatory decision-making. HRQL instruments can also be used for assessing symptom control, and supportive care interventions. Given the potential of these instruments, their role in hematologic disorders should be assessed. The ideal HRQL instrument should cover problems relevant to the specific disease process and additionally should reflect the multidimensional nature of HRQL measurement. This paper attempts to update what we have and what we don’t have in the field of hematology pertaining to HRQL.
Methods: Medline search was conducted using terms quality of life assessment and the following terms:
AML Myeloproliferative disorders Myelodysplasia Anemia Hemophilia Lymphoma Myeloma ITP Bone marrow transplantation.
The objective was to determine availablility of disease specific HRQL instruments in various hematologic disorders.. Disease specific instruments measuring HRQL were found for AML, hemophilia, myeloma, ITP and bone marrow transplantation. There were no disease specific instruments for myelodysplasia or myeloproliferative disorders. In AML, several disease specific instruments are available. These include the MRC/EORTC QLQ-LEU, the Life Ingredient Profile (LIP), and the QLQ-LEU-BMT, a BMT-specific instrument. The MRC/EORTC QLQ-LEU) has proved useful for evaluating long-term sequelae of leukemia treatments. The effect of anemia on HRQL is commonly measured with the Functional Assessment of Cancer Therapy-Anemia (FACT-An) subscale and the Linear Analog Scale. Many instruments are used to assess HRQL in lymphoma including general tools such as as the EORTC-QLQ-C30QOL, Medical Outcomes Study Short Form 20 (MOS SF20; generic) and the Rotterdam symptom checklist (RSCL; cancer-specific). Attempts to generate disease specific tools have occurred in disorders such as Cutaneous T -cell Lymphoma and CNS lymphoma. Here two instruments(EORTC QLQ-C30 (QLQ-C30)/EORTC Brain Cancer Module (BCM20) for CNS lymphona) and (Skindex-29 and FACT-G, for CTCL)are used to increase disease specificity. Long term survivorship in Hodgkins disease has been assessed via the Health Utilities Index. Transplant specific tools include City of Hope-Quality of Life-Bone Marrow Transplant (COH-BMT) and the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT). The EORTC QLQ-MY24, represents the first disease specific tool for myeloma. Disease specific tools for hemophilia include the Hemofilia-QoL and the Hemolatin-QoL(for adults). In ITP the ITP-Parental Burden Quality-of-Life Questionnaire represents a disease specific measure.
Conclusion: HRQL is becomming an important end point in the treatment of hematologic disorders. Further research is needed to develope more disease specific instruments.