The Heptinstall Article Reviewed

March 14, 2008

The preservation and maintenance of quality of life (QoL)-the "extent to which one's usual or expected physical, emotional, [and] social well being [is] affected by the medical condition or its treatment" [1]-is an important aspect in understanding and approaching the overall management and evaluation of patients with myelodysplastic syndromes (MDS) by health care providers. MDS patients are treated with blood transfusions to improve their health-related QoL. Fortunately, recent advances in therapy have signifi cantly enhanced their ability to cope with MDS.

The preservation and maintenance of quality of life (QoL)-the "extent to which one's usual or expected physical, emotional, [and] social well being [is] affected by the medical condition or its treatment" [1]-is an important aspect in understanding and approaching the overall management and evaluation of patients with myelodysplastic syndromes (MDS) by health care providers. MDS patients are treated with blood transfusions to improve their health-related QoL. Fortunately, recent advances in therapy have signifi cantly enhanced their ability to cope with MDS.

New approved therapies and a better understanding of the disease are likely to improve QoL for MDS patients. In the report by Heptinstall, many issues are highlighted that have a tremendous impact on the overall QoL of MDS patients: ongoing comorbidities that affect their treatment options; associated complications of the disease process (eg, infection, bleeding, fatigue); patients' and family members' lack of understanding about the disease process and available treatment options; and the psychosocial and economic impact of being diagnosed with this disease. Indeed, MDS symptoms and treatment signifi cantly affect patient's QoL and psychological well being.[2]

MDS is a group of clonal hematopoietic stem cell disorders characterized by ineffective hematopoiesis that arises from accelerated apoptotic death of affected multipotent hematopoietic progenitor cells and their progeny, leading to bone marrow failure and peripheral blood cytopenias. It is diffi cult to diagnose because of the absence of symptoms in the early stage of the disease, and is often discovered accidentally during routine physical examinations or blood tests.

The best treatment for a person with MDS depends on his or her type of MDS, risk level, age, overall health, and personal preferences. Treatment options include: supportive care; bone marrow or cord blood transplant (BMT); chemotherapy; newer approved drug therapies (azacitidine [Vidaza], decitabine [Dacogen], lenalidomide [Revlimid]); and investigational drugs/clinical trials.

Other new drugs for MDS are being developed at a vigorous pace, as new clinical trials continue to make advances on improving outcomes in QoL and ultimately in overall survival. Synergy is being sought with new combinations of the active drugs and the less active drugs. As we learn and understand more about the molecular biology of MDS and the ability to modify these molecular targets, research has opened new doors for the treatment of this once ambiguous and poor-outcome disease. Patients' desires and perceptions about QoL must be carefully considered during treatment selection.

Ms. Heptinstall answers a key question: Why is it important to study the QoL of MDS patients? Accurate assessment of patients' QoL can provide physicians and other health clinicians with important clinical information. According to Cella et al, changes in QoL are important indicators of the impact of new therapy, can affect a patient's willingness to continue treatment, and may aid in defining response in the absence of quantifi able end points such as tumor regression.[2] It is important that the patients' QoL assessments are performed by health care professionals and documented so that prospective and timely interventions and evaluations can be initiated when necessary. Ms. Heptinstall discloses powerful statements made by MDS patients as well as data gathered by the MDS Foundation from MDS patient forums conducted throughout the US and Europe. It is imperative that we help our patients to identify useful coping strategies, assist them in interpreting information we provide to them, and help them to fi nd a balance between lifestyle alterations and maintaining quality of life.

References:

References


1.

Kouides PA, Bennett JM: Understanding Myelodysplastic Syndromes: A Patient Handbook, 3rd ed. Myelodysplastic Syndromes Foundation Inc., 2006. Available at:

http://www.mds-foundation.org/pdf/6-5-06-mds-patienthandbook.pdf

. Accessed on January 16, 2008.

2.

Cella DF: Measuring quality of life in palliative care. Semin Oncol 22(2 suppl 3):73–81, 1995.