Researchers have announced that current clinical treatment guidelines do not adequately incorporate quality of life considerations and are calling for increased attention to the “patient perspective” in myeloma treatment.. Presently, few studies have examined quality of life issues. For those that have, their results have often failed to have a meaningful effect on clinical decision-making.

A study in the European Journal of Haematology identified 15 high-quality clinical trials since 1990 that included quality of life as a principal focus. These studies examined the impact of various myeloma treatments and therapeutic interventions on health-related quality of life. Quality of life considerations included, but were not limited to: emotional well-being, social functioning, fatigue, pain, and appetite.

Four studies evaluated treatment of myeloma patients with erythropoiesis-stimulating agents, or ESAs. These drugs, which increase red blood cell count to combat anemia and improve fatigue, led to small, yet statistically significant, improvements in clinical health and quality of life. The progress became especially pronounced when ESAs were administered early in treatment. Yet, ESAs have not become a consistent component of myeloma therapy. Clinicians’ failure to prescribe these drugs more widely might be linked to the recent studies which have associated ESAs with faster relapse and shorter overall survival.

Studies have also evaluated the effects of interferon, a chemotherapy supplement; bone strengthening bisphosphonates; and Velcade ^[1] (bortezomib), a novel therapeutic agent, on patients’ quality of life. Most research has found interferon decreases quality of life without providing significant clinical benefit, and it has largely been abandoned as a myeloma therapy. Researchers explained that interferon has probably lost favor with clinicians because it has been replaced by newer drugs, and not necessarily because of its negative impact on quality of life.

In contrast, studies of the bisphosphonate Aredia ^[2] (pamidronate) have found that it increases quality of life by reducing risk of bone fracture. Aredia does not combat myeloma directly, and instead only targets one of myeloma’s side effects. Aredia has assumed clinical importance, however, and has been incorporated into treatment guidelines because of its effect on patients’ overall quality of life.

Studies of Velcade have similarly demonstrated both clinical benefit and improvements for quality of life. Compared to dexamethasone ^[3] (Decadron) , Velcade not only produced higher response rates and longer survival, but also improved cognitive and emotional functioning while reducing sleep disturbance. Study authors explained that patients treated with Velcade experienced benefits of “living longer and living better.” Due to these results, Velcade has quickly become a valued myeloma therapy.

Although clinicians have quickly adopted Aredia and Velcade as myeloma therapies, possibly because of the benefits to patients’ quality of life, the study authors emphasized that most quality of life studies appear to have little impact on published treatment recommendations. They attributed this failure in large part to methodological weaknesses in study design and controversies in interpretation of quality of life data.

In addition, they hypothesize that the strict word-count constraints imposed by journals may deter researchers from thouroughly reporting on quality of life outcomes. Authors must convey extensive information about a therapy’s direct effect on remission and survival, with consequently little remaining space to explore additional considerations. One potential solution, researchers explain, could be to prepare distinct quality of life publications.

Study authors are continually encouraging researchers to prioritize the patient perspective in myeloma research by increasing the quantity and quality of clinical trials that include quality of life considerations.

“The methodological quality of collecting and reporting [quality of life] data must be improved, before [quality of life] results can be expected to exert a major influence on clinical decision making,” study authors explained.

For more information, see the abstract for free in the European Journal of Haematology ^[4], the full article for a fee, or the related Beacon article ^[5] about quality of life after stem cell transplantation.